Saturday, December 13, 2014

Do Doctors Know What They're Doing?

I'd like to start this out by saying that I realize that there are multiple reasons doctors don't/can't know everything about every possible illness. I also realize that there are many amazing doctors that do the necessary research to ensure they are diagnosing individuals correctly AND prescribing the correct treatment.

But then there are articles like the one I just read. The article titled "Many Providers Stray From Guidelines For Diagnosis and Management of Celiac Disease" cites a study (although small in my opinion) that confirmed doctors aren't following proper guidelines when it comes to the diagnosis or treatment or celiac disease. I'd absolutely love to have more of the story. I want to know why they aren't following guidelines. I want to know what is causing this whether or be stubbornness or lack of access to information. I want to know more! :)



The biggest problem I see in providers not diagnosing correctly or prescribing the correct treatment is that individuals then don't know what they're doing either. I can't describe the frustration I feel when I see people asking for help when it comes to celiac disease, and people coming up with the craziest of answers. I'm all for individuals making their own choices, but many are doing this without doing their research or truly understanding the repercussions of their actions.

There is this crazy process with celiac disease where individuals either can't find a doctor who recognizes the symptoms or refuses to test them. If they do find a doctor to test them, incorrect testing methods are often used leading to an inaccurate or incomplete diagnosis. If they do receive a diagnosis, the method of treatment is often incorrect.

My experience went like this:
1. For over 10 years, I dealt with "classic" symptoms of celiac disease. I was often told I had IBS, and I was prescribed various medications that happened to have a side effect of constipation to help offset the diarrhea. I was also told to "eat more bread" because that would help my constant stomach upset.
2. I finally found a doctor who looked me straight in the eyes after I went over my laundry list of symptoms and told me he didn't even need to test me--he knew I had celiac disease. He said I needed to start a gluten-free diet immediately, and I could look it up on the internet to figure out how to do it.
3. He ordered blood tests and a colonoscopy to confirm the diagnosis he was sure of anyway. Unfortunately, the tests he ran did not constitute the full "celiac panel" which meant I never got that definitive answer. When I finally got in for the colonoscopy about eight weeks later, the gastroenterologist said I should have an endoscopy to confirm celiac disease. By that point, I had done enough research to know that I should have had an endoscopy in the first place, and it was probably pointless at that point because I had been on the gluten free for eight weeks. I agreed for them to do it because I had already done the prep, and the doctor explained it was possible they would still find damage.
4. When I went to the follow up appointment for the colonoscopy and endoscopy, the gastroenterologist greeted me by saying something to the effect of, "Congratulations! Your biopsy was clear, you don't have celiac disease." I don't recall exactly how many biopsies they took, but off the top of my head, I believe it was only one or two (the last standard I read was a minimum of 7 as damage is usually very patchy).
5. My blood tests were never explained, and I had to request the records a year later when I had a better understanding of the disease as a result of my own research. I was curious if the diagnosis was correct, and I was angry and frustrated and hoping it was actually something else. Despite the fact that the wrong tests were run, deep down I knew I had it, and I couldn't bring myself to purposely ingest gluten to have the tests run again.
6. A few years after my diagnosis, while questioning other intolerances and such, I remember my doctor saying that I needed to "avoid" gluten when possible. He looked at me like I was a crazy person when I explained how strict I needed to be due to how sensitive I was, and how horrendous my reaction was to small amounts of it. I questioned his method of diagnosis, and he looked puzzled at the possibility that he had done anything incorrectly. At the same time, he looked me straight in the face and confirmed that I definitely had celiac disease.
7. I changed doctors and I basically don't mention celiac disease. At this point, I've done countless hours of research, and unless I get lucky, I figure I know more than the doctors do, so I'll manage it myself.

It's crazy to me that basically everything was done wrong every step of the way. It wasn't even just one doctor that did things wrong. It seems every practitioner I have ever seen has no clue what the diagnostic or treatment process is for celiac disease. I will continue to believe I have celiac disease because I did have "classic" symptoms that resolved on a gluten-free diet, and I have a horrible reaction to it even when I have no idea that what I've consumed contained gluten, so it's not a placebo effect. I'm quite certain that I would have received the "gold standard diagnosis" had the doctors realized what that was and how to do it.

Am I angry that doctors don't understand? I'll admit that I do get angry sometimes, but more than anything, it's frustration. There are multiple reasons that it can be incredibly hard to receive a diagnosis of anything, and it would be impossible for a doctor to know everything about every possible illness.

Due to all of these details, I will always be an advocate for informing individuals of the correct process to receive an accurate diagnosis.

If you are interested in more information on the correct diagnostic process, you can click here for a quick description of the process I did and/or click here to read a previous post of mine on why I think it is so important.

I hope to do a future post with links to the various research clinics and how they describe the process because the research study I originally referenced basically only says what the doctors are doing wrong. It would be very hard to realize why the study is so concerning unless you are familiar with the process.

Wednesday, December 3, 2014

The Fear of Pooping in a Dressing Room

I'm not entirely sure how to explain, but I've always had a fear of urgently needing to poop while trying on clothes in a dressing room. Imagine my surprise when I read an article titled Why taking a dump in a Kohl’s dressing room is never a good idea.  The craziest part is that I buy the majority of my clothes at Kohl's...where the juniors dressing rooms are usually located "conveniently" at the opposite end of the store as the restrooms.

I absolutely HAD to read it. In the article, he calls the man who poops in the dressing room Dirty Randy. Is it sad that I REALLY want to talk to Dirty Randy? I want to find out so many things...

  • Did he know he had to poop when he entered the dressing room?
  • Did he purposely go to the dressing room to poop?
  • Had he done this before?
  • Was he to embarrassed to tell his wife he needed to poop, so he chose the dressing room over the restrooms?
  • Would he answer questions indefinitely until I was satisfied with his reasoning?
If you haven't read it yet, I highly recommend you do if you ever had the urgent emergencies often associated with celiac disease pre-diagnosis. 

It's rare at this point that I experience stomach issues while shopping, but I still have anxiety which makes me fear I will have stomach issues even though I'm simply imagining it. One of my worst nightmares was being in a dressing room and needing to go NOW. What would I do? Grab my clothes and run to the restrooms across the store wearing what I was trying on? Would they attempt to arrest me for shoplifting in the process? Would I try to poop in a corner like this man seemed to have done and hope no one noticed so I could hide in the clothes? How would that poor store clerk feel when they discovered what I had left behind? 

It's crazy to me that after so many years, I'm still so incredibly afraid of the potential of having an "accident." 

I do have to say that after my diagnosis, it's rare I think the restroom signs should look like this: 

ETA (12/29/14): I just discovered my husband never read this post. I was shocked to discover he had no idea I had this fear. He questioned why I would ever poop in a dressing room. My response was, "What if you're trying on clothes, and your stomach goes completely crazy, and you absolutely positively need to poop RIGHT NOW!!! There is no way you can get your clothes back on and/or rush to the restroom across the store in the clothes you're trying on. What other choice do you have?" He simply looked at me dumbfounded. Apparently he's never had stomach issues ;)

Monday, November 10, 2014

My Reaction to Gluten

I think everyone on a gluten-free diet is often asked what happens if they ingest gluten. I've noticed many people are very offended by this question, but I personally appreciate it. Even if someone's intention is to discredit my "pickiness" or whatever else their judgment is of me, my answer usually shuts them up very quickly.

To be honest, I'm not entirely sure what my reaction is any longer. I'm so overly careful that there have been a couple of times in the last few years that I think I might have been glutened, but I'm not entirely sure because it was only a small possibility.

With that being said, I can say what my reaction used to be. The most recent time that sticks out was about five years ago. I was at a baby shower, and the mother-to-be's mom has celiac disease. I was super impressed because she had a separate table with all of the gluten-free food to ensure it wasn't contaminated. I filled my plate full, and sat down to happily eat the feast before me.

When I was done with my meal, happily enjoying my belly full of food I didn't have to prepare, her mom tapped me on the shoulder and asked if she could speak to me in the kitchen. Once we were safely behind the closed kitchen door, she said "I may have slightly inconvenienced you." She continued when she saw the puzzled look on my face to explain that she had made regular meatballs and gluten-free meatballs. At the last minute, she had changed the crock pot that each was in to better accommodate the size, but her husband didn't change the placement of the crock pots when he brought them in for the shower. The regular meatballs had been placed on the gluten-free table. I stood there in shocked silence until I was able to mutter that it was ok, and then I said something about how everyone makes mistakes as I went back to my table.

The pathetic part is that I don't even really like meatballs. They're not bad, they're just never my first choice for something I want to eat. I only ate them because it was unlikely I would ever make them for myself because I don't like them that much, and it was too much effort for something I don't care for that much, and it was very hard to find packaged gluten-free meatballs.

At the time, the amount of time before I reacted to gluten was in direct correlation with the amount I had consumed. The larger the amount, the sooner I'd react. The smaller the amount, the longer before I'd react. In other words, if I was contaminated with a very small amount, it could be 24-48 hours before I got sick. I assume if I had eaten a piece of bread, I would have reacted immediately, but I never tried it to find out.

In the case with the meatballs, I ate them around 1pm, and I got sick around 6pm. It didn't matter the quantity consumed, the reaction was always the same once it happened. The only forewarning I would get was sometimes a little bit of brain fog. The next sign (but usually the first) was the IMMEDIATE need to get into a bathroom. This time, I still vividly remember that I was cleaning my dining room table. My head felt a little funny one second, and the next, my stomach seemed to do a complete flip and I was in horrible pain and needed the bathroom immediately. I shot through the kitchen, slammed the bathroom door shut, and hoped it would be over soon.

I'll spare you the graphic details, but I spent a fair amount of time sitting on the toilet in a cold sweat feeling like I was going to pass out while it felt like my insides were being torn out. Once that was over, my head was in a total fog, and all I was capable of doing was laying down. After a couple of hours, I was able to sit up on the couch, but I feared walking around was too dangerous as I might fall over. Part of me wanted some food as everything had made it's way out of my digestive tract, but I knew my body wasn't going to accept anything for the next two weeks.

That's right. Two weeks of getting sick every. single. time. I. ate. Bouts of brain fog were sure to work their way in there too. And don't forget the exhaustion. I could make my way through my work day, but that was it. I wasn't able to call in sick to work, so missing work wasn't an option, which meant the rest of my life was put on hold until the damage I had done had repaired itself.

That's my story. It's also why I'm so incredibly careful. My doctor once told me that every time I have diarrhea, it's a sign that my body isn't digesting anything I'm eating, so I might as well not eat because I'm essentially just throwing the food away anyway. He was referencing my other food intolerances, but it really struck home for gluten too.

So I want to hear from my readers. What is your reaction to gluten? Do you have celiac disease, gluten-sensitivity, etc? How careful are you and why?


Tuesday, October 28, 2014

So I went out to eat tonight...

As I start this post, I have no idea what to call it. I have a million titles going through my head:



If you haven't figured it out, I went out to eat tonight (not totally obvious, but if you've been there, you'll get it). It's been a while. I recently discovered there are more things affecting my digestion, and I haven't eaten out because I'm doing my best to keep them completely out until I'm able to reintroduce them one by one to see if they're affecting me.

Today was a really rough day, so my husband basically demanded that we go out to eat to decompress. We've been so busy that we basically have zero food in the house, and I wasn't sure what other choice we had besides going grocery shopping and then making food. That would have sucked because I was already starving.

We planned on a local steakhouse, but when we got there, the parking lot was literally packed. I didn't want to wait for a table for over half an hour, and I hate eating out at packed restaurants because it's more risky, so we decided to try another restaurant a mile down the road. My husband called them on our way, and they said they had no wait, so we were relieved. For some reason their parking lot was just as packed as the first place, so we questioned if it was necessary to try a second location. At that point, I didn't care how badly I wanted a steak. I just wanted food.

My favorite waiter also works at the restaurant we wound up at, so it was ok with me. Unfortunately, he was working, but he wasn't waiting tables so we had to go with a random waiter/waitress.

Even at the end of the night, I wasn't entirely sure what to think of our waitress. When I first mentioned gluten-free, she said we could do basically anything on the menu except for pasta. When I mentioned I had issues with dairy and soy, she asked if I wanted her to grab the gluten-free menu so I could figure out what I could eat. I was a little worried at that point because there was no reason to grab a gluten-free menu due to other allergies.

The drink I ordered was amazing. The waitress suggested it, and I decided to give it a shot. When I first took a sip, I was about to tell my husband how good it was when another flavor hit, and then another, and another, and another. I didn't describe what I had experienced, but rather had him try it, and his reaction was hilarious. He expressed the same reaction I had just experienced very well.

Unfortunately, the drink turned into a huge fail. My favorite waiter had found a few minutes to come chat with us, and at one point, he said something about how my drink had Disaronno Amaretto in it. I froze because Amaretto is made from almonds and I'm allergic. I had only taken a few sips at that point, but I had a horrendous reaction to Amaretto about 10 years ago, and I didn't want to experience that again. My friend quickly scooped up the drink and said he would make a new one without the Amaretto. My husband looked it up and discovered Disaronno is made with almond flavor and there is supposedly no almonds or nuts of any form. It also said the recipe had not changed since the 1500's, but it was hard for me to believe that something made in the 1500's was made with "almond flavor." Did that even exist then?

I wound up getting a prosciutto wrapped pork dish. They said it had butter in the sauce, but I really didn't want a dry piece of pork wrapped in prosciutto, nor did I want the usual salmon I normally get there, so I figured I'd deal with my dairy reaction to get a great tasting meal. It was worth it, but mainly because I didn't seem to have any reaction to it so I question if there really was butter in the sauce. If I weren't such a worry wart, I wouldn't have had that thought lead me to question if there was really gluten in the meal that they hadn't realized was there. If they can make one mistake on ingredients, of course they can make another. Then again, I had no reaction to anything, so of course it was safe. That's just the way my mind works. (Did that even make any sense???)

The meal also had this amazing side of broccoli and cauliflower. I've never liked cauliflower. I don't hate it, but I definitely don't choose it willingly most of the time. Supposedly it's drizzled in olive oil and then oven roasted. I'm definitely going to give it a shot at some point because (I'll say it again) it was amazing!

The waitress ended the evening by telling us that we needed to come back more often, and it was her goal to create a new menu completely based around me. By the end, she realized it was pointless to offer us dessert because there were exactly zero items on the menu I could eat.

We were sure to tip her really well even though I questioned how great of a waitress she was for many reasons (including a very inappropriate comment she made to the table behind me). The tip wasn't really based on her service, but rather on my needs. I know I am a total pain to deal with. I know it takes a ton of extra time to check on all of my requests and such, and I feel they should be rewarded for that as it's taking time from other customers who may or may not dock the waitresses tips for being slow because of me. I feel it is my responsibility to make up for that. The only time I won't tip really well is if they were to outright refuse to check things for me or if it's obvious they didn't actually check. Thankfully that's never happened.

So that's my story. I went out to eat tonight. I think I'll use that as the title. I guess it fits well.... ;)

Wednesday, September 17, 2014

Article: Gluten-free food labels reviewed by FDA for trust issues

I've been instructing people to know labeling and manufacturing policies for years. Individuals are taking a risk every time they simply rely on an ingredient label to determine whether or not a product is gluten-free. Many individuals forget that wheat is the only ingredient that is required to be clearly disclosed on ingredient labels. The other forms of gluten (barley, rye, and sometimes oats) are not required to be disclosed and can easily be included in ingredients such as natural flavors. Even products that do not actually contain gluten can easily be cross contaminated with various forms of gluten too.

In my opinion, it doesn't take that long to do a little research into the company to find out what their labeling and manufacturing practices are. Are they unsure? If they're unsure, shouldn't you be?

Today, I discovered the article Gluten-free food labels reviewed by FDA for trust issues which is the first time I've seen a study done to prove my point. The article states:
Researchers found that 98.9 percent of the products they tested met the FDA rules for gluten-free labels. This means that the items had less than 20 ppm of gluten. Although this is positive news for people with celiac disease who depend on these labels, there is another aspect that needs to be considered. Food products that were not labeled as gluten-free but did not have obvious sources of the protein in the ingredient list were a problem. They found that 19.4 percent of these items had more than 20 ppm of gluten.
Read that last sentence again:
They found that 19.4 percent of these items had more than 20 ppm of gluten. 
Can I please yell out "I told you so!"???

This is exactly why I do my research. I may not have the money to test every product I consume, but I can definitely be familiar with which brands clearly label all forms of gluten and have good manufacturing practices so that I can simply read their label to know.

One of my biggest pet peeves is when someone asks if a product is gluten-free, and the answer they receive is, "I never react to it" or "I eat it with no problems" or some other ridiculous response that has absolutely no basis in fact or reality (this happens often on gluten-free forums). I see people recommending they contact the manufacturer but other people seem to think they're being ridiculous and wasting their time. Someone will state that they have contacted the manufacturer and were told that it is not gluten free, and someone else will still argue with them that they've never reacted to it, therefore it must be safe.

Ultimately, my opinion is something along the lines of "to each their own," but I would love if I could get the word out there that it isn't worth it to eat items that aren't necessarily safe. Why is the gluten-free community supporting brands such as Kraft even though Kraft states their products that contain "colors, flavors, or spices" may contain gluten (part of the issue may be that Kraft has their old labeling policy on outdated web pages on their various sites). Why don't we speak out to Kraft to get them to change their policy back to their old policy that clearly stated all forms of gluten? Why don't we stop buying their products so that they feel the financial repercussions and have incentive to change? Obviously Kraft is not the only company, but they've done an excellent job of ticking me off so I usually use them as my example. They're also the largest company that I'm aware of that has gone from having a very clear labeling policy to a very unclear labeling policy.

(stepping off soapbox)

Back to the article. Do you know what's in the food you're eating? Do you take the little bit of extra time it takes to confirm the items you're eating? I'll be the first to admit that I am overly careful because I am scared to death of cancer. My luck will be I'll get another kind of cancer, but I will take every step possible to avoid colon cancer by taking every precaution against ingesting gluten.

I strongly urge everyone to contact companies. Show them your appreciation for clearly labeling their products or show them your displeasure at their vague statements or inability to know. Don't be too hard on smaller companies (they have smaller pocket books to have separate prep areas, etc), and never be rude as that will cause companies to think the gluten-free community is full of jerks. Be clear, concise, and polite. Show them we stick together.

Sunday, September 14, 2014

Judgy People

So I just sat down with an entire pan of brownies, and proceeded to announce on Facebook that I had sat down with an entire pan of brownies. It hasn't happened in a while, but for some reason, I started preparing myself for someone to tell me I was lying about being on the gluten-free diet because I was eating brownies. This used to happen a lot, especially at my old job. "You're not really on a gluten-free diet, I see you eating cookies all the time. Stop lying." I imagined them feeling this way about me:



Except I wasn't lying. And I felt this way about them...


Granted that was around 6 years ago when no one knew what a gluten-free diet was, but it was still frustrating. My natural tendency toward anxiety makes me fear it happening again. I've received quizzical looks when I eat something where I can I just tell they're questioning how it could possibly be gluten-free. I usually respond with explaining how easy it was to make or some other comment to ensure they understand it is gluten-free and they need to stop questioning it before they even say anything.

Makes me question if I need to clarify my verbiage every time I eat something:
     "This is gluten-free bread."
     "These are gluten-free brownies."
      "I can't wait to eat my gluten-free sandwich."
     "Where did my gluten-free carrots go?

But, at that point, I realize how ridiculous that would be, and I want to wear a t-shirt that says this everyday.


So now, I'm going to continue eating my pan of brownies while I question if I used memes correctly in my blog. Not really my thing, but it fit my snarky mood tonight ;)

p.s. Yesterday was Celiac Awareness Day. September 13th was the day chosen because it is the birthday of Samuel Gee who published the first modern description of Celiac Disease. We wouldn't be where we are today when it comes to research on celiac disease if it weren't for Samuel Gee.





Saturday, August 2, 2014

FDA Gluten-Free Labeling Law to Take Effect

August 5, 2014 is a very important date for those who need to adhere to a gluten-free diet. The FDA ruling on products that are labeled gluten-free will go into effect that day.

Am I thankful that something was finally done? Absolutely! Am I going to jump for joy?... Highly unlikely.

It seems some think that this labeling law means that everything that states "gluten-free" on the package will magically become safe. Others think that because they ruled that products must contain less than 20ppm gluten, that items with the words "gluten-free" on the label will suddenly contain 20ppm gluten.

The bottom line in my opinion is that those manufacturers who wanted to jump on the bandwagon with zero regard for whether or not their product is actually gluten-free will finally be held to a standard... if they're reported. The FDA has already stated that it would take several (they haven't stated how many "several" is) complaints about a product for them to pursue testing to determine if the product indeed contains gluten. I can only imagine how many people are going to "get sick" off a product and automatically report it without taking any other factors into account. This could easily take away time that could be spent checking into products that are actually labeled incorrectly, so it makes sense that it would take several complaints.

Best case scenario is manufacturers will become much more careful about ensuring they are being careful about the items they are labeling gluten-free. Worst case scenario...well, I hope there is no worst case scenario. Ultimately, this is a very good thing, and it should have been done a long time ago. Whether you agree with the way it was done or the parameters that were decided upon, etc, it's a step forward.

Saturday, July 19, 2014

French Toast Bake (Random Style)

We are currently trying to empty out our basement freezer so we can defrost it. This has resulted in a plethora of "interesting" meals. The goal is to move everything from the basement freezer up to the regular freezer today. This may or may not result in us putting another turkey in the refrigerator even though we already have one thawing that we will be making tomorrow. It all depends on space available.

Today, we are using up 2 pints of frozen blueberries and a loaf of cinnamon raisin bread. It's definitely one of my prouder meals in this whole process, although I have no idea if it will work as I wasn't even remotely prepared to make it. We've been having french toast every Saturday morning for a few weeks because there was a sale on Udi's Cinnamon Raisin bread about 6 months ago, and we bought A LOT. At $3.50 a loaf, it was hard to pass it up. The ends of the loaves don't work well for french toast, so we've been throwing them into a "discard" bag so that we don't have a million bags with only ends in them.

Last week, this bag became full enough to constitute an entire loaf, so I decided it was time to do something with it. I pondered making some sort of sweet croutons, but I wasn't sure what I would put them on. I knew I needed to do something where they were cut into pieces, and I knew the oven would probably be necessary. Beyond that, I wasn't sure.

I had pondered trying out a french toast bake (otherwise known as french toast casserole) because it seemed simple enough to try. I started without checking any recipes, and then thought twice and looked at a few recipes to get a general idea of how many eggs and other ingredients I should use.

I wound up using the following:
1 loaf of bread (all ends--some people call them the heel or crust pieces)
8 eggs
Coconut milk (I just sort of poured)

I broke the bread into bite size pieces and tossed it into a 9x9 glass pan that I had sprayed with olive oil. I then beat the eggs and coconut milk and poured it over the top. Some of the pieces seemed really dry, so I tried to mix everything around but it wasn't an easy process because the pan was very full.

I decided to let it sit for a little while while I worked on the topping. The topping included:
1/2 cup gluten-free flour
Light brown sugar that I eyeballed at about 1/2 cup
Gluten/Dairy/Soy Free butter that I eye balled at a few tablespoons
Nutmeg--I just kinda shook a bunch on. Maybe 3/4 teaspoon.
Cinnamon--I just kinda shook that on too--probably also about 3/4 teaspoon

I mixed all of the topping ingredients together, and then put it in a baggie so I could mash everything together to ensure the butter was mixed thoroughly. Then I put it back in the bowl and mixed it with a fork so that it was crumbly.

I still wasn't happy with the pan I was using, so I took out a 9x13 pan and sprayed that with olive oil. I then dumped the contents of the original pan into the 9x13 pan. I then scowled at myself for the amount of dishes I was using/wasting because I would need to clean more. At least my experiment had a better chance of working.

I then took about two pints of frozen blueberries we picked last year and poured that over the top, and then sprinkled the topping on and threw it in the oven at 350 degrees. I had no idea how long to bake it, so I set the timer at 30 minutes, and came to my computer to check what the recipes I had looked at suggested. It seemed most thought 45-60 minutes was best depending on how "wet" you wanted the final product.

The timer just went off for the 30 minutes, and our kitchen smells AMAZING. My husband has no idea what I'm working on, so I had him walk into the kitchen, take a deep breath through his nose, and then walk back out. He thinks I'm baking cookies.

I also took a quick picture and wished I had taken pictures throughout the process:
French Toast Bake in Oven (pardon our dirty oven)

(Fast forward an hour)
It ended up taking one hour to bake. The finished product was great. It definitely tasted more like a dessert than a breakfast, but I'm good with that occasionally.

Here are two photos of the finished product:
French Toast Bake finished product. 

French Toast Bake plated. 
I feel like there are a million things I could have done better, but I'm happy with what I got. It definitely could have looked prettier, and an actual recipe may have perfected the taste, but I don't think it's too bad for randomly coming up with it.

Thursday, July 17, 2014

CeliAction Study

I've been mulling this one over for a while. Even as I write this, I'm not entirely sure where to start. I guess I'll start with the basics. Alvine Pharmaceuticals, Inc is sponsoring a study on an investigational drug for Celiac Disease. If you'd like to read more directly from the company, you can go to the company website here.

I'll admit I haven't done a large amount of research on this study, but I guess my intent is to give my opinion on studies in general, so I'd prefer to not know too many specifics.

Years ago, I was a member of an online forum when a member posted a question for each of us to vote as to whether or not we would ever consume gluten again if we were "cured." I had been diagnosed about a year or two prior, and I was still flying high on how much better I felt. I think I responded that I wouldn't change a thing--the gluten-free diet was a far superior way to live even if I could take a pill to be cured. A few hours later, I second guessed my answer and decided it would be nice to be able to go out to eat without being a pain to the wait staff with all my questions.

Fast forward to present day, and I'm not sure what I would do if I were offered a pharmaceutical cure. I'm not entirely sure how much I would trust that something would work. My biggest fear is relying on a pill that claimed to prevent any damage, but finding out later that it was simply preventing any symptoms of consuming gluten but the damage was still being done. I've already dealt with colon polyps, and I have a huge fear of getting cancer.

I always questioned when a drug would be introduced. Many individuals believe celiac disease hasn't received the necessary attention from medical professionals because the treatment is "natural." There is no profit in diagnosing celiac disease because there is pill to prescribe. There are no pharmaceutical reps sending kickbacks to the doctors, therefore there is no incentive to know anything about it.

So what is the purpose of this study? This is what the website says:
The CeliAction Study is a clinical research study evaluating an investigational medication for celiac disease. The study will explore whether the study medication is able to improve the damage in the lining of the intestine caused by even the smallest traces of gluten.
The study will also evaluate whether the investigational medication improves any symptoms of celiac disease compared to a placebo. While enrolled in the study, you will be asked to maintain the gluten-free diet you are currently on.
In the interest of full disclosure, I question A LOT about this study. These are my own personal thoughts on the matter:

  • It seems to me that this study will require a HUGE time commitment from the participants in order to truly determine if the medication is working. 
  • I question how they will determine if the medication is working if the individuals are supposed to continue on a gluten-free diet. No gluten=no damage=no study. 
  • I question if participants will take unnecessary risks. I saw a claim from someone who was supposedly part of the study stating that she had traveled out of the country and because she was having such good luck with eating out and not getting sick, she decided to try eating an entire croissant. She claims she didn't get sick. The pill isn't meant for the actual consumption of gluten, but how many people will risk it anyway?
How could something like this benefit those with celiac disease? My thought is that by introducing a medication, pharmaceutical companies will give doctors an incentive to diagnose it. At this point, such a small percentage of individuals with celiac disease are diagnosed that it is absolutely ridiculous. The more individuals diagnosed, the more food options there will be (hopefully this would also help to eliminate the "fad" part of the gluten-free diet).

I hear more and more about this study every day. I've even seen a commercial on network television. I'm hoping with all of the exposure, they are able to obtain a large enough group of participants to determine the safety of this pill.

In a perfect world, I believe doctors would be better educated on celiac disease, and they could give better advice to their patients. Most doctors have no idea what to tell their patients who are diagnosed and simply refer them to the internet. Is this pill necessary because people aren't responding to the diet or because they're not following the diet correctly?

Tuesday, July 15, 2014

I Think I Was Glutened :/

Ugh...

It's been years since I was last glutened. It's been so long that I don't recall the symptoms very well, which is why I'm not even sure. I also know that my reaction seemed to be ever evolving, so I'm not even sure what my reaction is any longer.

It used to be that within 24 hours of ingestion, I would have one horrifying visit to the bathroom. I then experienced several hours of being incredibly lethargic, intense brain fog, etc. For the next two weeks, I would become ill every time I ate something. That was my reaction in a nutshell. It seemed the more I ingested, the quicker I reacted, whereas the less I ingested, the longer the time period until I reacted.

So why do I think I was glutened? Last week, after eating out, I experienced a horrifying trip to the bathroom the next morning. I assumed it was because I wasn't used to greasy food. I'm still not sure, but the last week has been full of far too many urgent trips to the bathroom. They don't necessarily happen immediately after eating like they used to, but they're definitely very frequent.

Last night was the worst. I needed to run to the grocery store, and when I pulled into the parking lot, I felt that familiar twinge in my stomach. I sat in the car for a moment trying to decide if I needed to go straight to the restroom or if I would be safe to attempt to grab the five items I needed. I finally left the safety of my car and determined I could attempt to do my shopping and then head to the restroom if necessary.

I didn't even have one item in my cart when I decided I had probably made the wrong decision, but I took a deep breath and pressed on. The fear of knowing the restrooms were on the opposite side of the store didn't help to calm my nerves. I wanted to grab a few extra items, but I determined it was a better idea to grab just the necessities. As I headed to the checkout lanes, I did a quick calculation of how long it would take me to get through the line and whether or not I could make it through without crapping my pants before making it to the restrooms if my stomach started spasming while I was in line.

I made it through the line and decided I'd prefer to get home rather than using a grocery store restroom. As soon as I left my parking spot, I wondered if it was a mistake. I was only a few miles away from home, so I hoped I could make it. I quickly called my husband to ask him to unlock the door so I could run inside immediately to the bathroom....but he didn't answer. As I approached a McDonalds, I questioned if it was a better idea to stop there as I didn't really have any options once I passed it. The spasms were getting so bad that I felt like I was going to pass out, so I felt it was safer to stop.


As I walked towards the back, I saw a large sign on the mens room door: "Restrooms are for paying customers only." I foolishly hoped the same sign would not be on the womens door, but I was wrong. I was past the point of no return, so I pushed through the door past the sign, and slipped into a stall.

I left as quickly as I could, avoiding eye contact with the staff, who I assume hadn't even noticed me walk in because it was probably a bunch of teenagers working. I'm a natural rule follower, and I felt bad for "breaking the rules" as well as "blowing up the bathroom" in a sense.

I drove home slightly ashamed that I had resorted to emergency trips at McDonalds after so many years. I used to know where every single restroom was on every single route I could ever need to take. I no longer know those things because it's unnecessary information at this point, and I'm thankful for that.

I'm still overly cautious about everything I put in my mouth, but I think I got slightly sloppy for the sake of convenience. At this point, I'll never know if it was gluten or if it was something else that caused my stomach to suddenly get completely wonky. Either way, it's a good reminder that I need to remain vigilant so that I can continue enjoying life rather than fearing when my next emergency bathroom trip will be.

Saturday, July 12, 2014

Terror in the Breakroom

When I was diagnosed with celiac disease, I worked in a large call center. The break rooms were disgusting. I didn't dare keep my food in the fridge unless absolutely necessary because I worried about someone contaminating it or stealing it. It grossed me out even without the gluten thing to worry about. I wound up eating Dinty Moore beef stew or Hormel Compleats microwavable meals (they had 2 gluten-free options at the time) most days because they were shelf stable.

I literally used long rolls of paper towel to completely wrap my food to avoid any chance of anything flying into my food while it was in the microwave. I also set layers of paper towels under my food so the paper towels wrapped around my food weren't actually touching the microwave. While my food cooked, I scrubbed a spot at a table so I could sit. I didn't care if I looked crazy. There were some pretty odd ducks there that made my behavior seem normal in comparison.

After that job, I worked in the gluten-free industry for several years. Everyone I worked with was also on a gluten-free diet. It was amazing. We shared a microwave and sink with another non-gluten free company, but they were very careful about keeping things clean. I'll say it again. It was amazing.

I started a new job a couple months ago, and when they offered me the job, one of my first three questions was concerning the break room. I would only have half an hour for lunch, which wasn't enough time to get home to eat, so I needed to make sure I planned for eating. I was incredibly happy to find out they had 2 refrigerators, 2 microwaves and a stove. Perfect!

I still remember my first day going to the break room for lunch. I inspected the microwave as best I could without making it obvious what I was doing. It looked clean, but I ensured my food was covered securely anyway. I then sat down at a table with my food and scanned the table with trepidation for any sign of crumbs. It looked clean enough, but I would have felt much better about wiping it down. I really didn't want to be the "crazy new girl," so I chose to be careful about not touching the table so I wouldn't accidentally pick up a crumb and have it fall off into my food.

My household is 100% gluten free, so I rarely have to worry about my food being contaminated due to my surroundings. It's unlikely for something to happen, but I don't feel it's too much effort to take precautions.

Several weeks after starting, it occurred to me that I face the break room with at least a small amount of terror every. single. day. I've learned that I can quickly brush off the table with my hand without looking too weird. I'd prefer to get a towel and actually clean the table, but I'm not sure it's actually worth the effort. There are less than 100 employees, and many of them know I'm on a gluten-free diet, but I still prefer not to be the topic of conversation because they don't understand why I'm doing it and they think I'm weird.

Do I really face terror in the break room? No.

Do I think it's necessary to make fun of myself for the anxiety I have towards gluten? Whenever I can.

Tuesday, June 24, 2014

Best Poop Horror Stories

I don't normally like items on buzzfeed, but I loved the idea  I got from one today. When I saw the titled 15 Poop Horror Stories That Will Make You Feel Better About Yourself, I knew I had to read it.

Ever feel like you needed these?

Most people on a gluten-free diet have their own "poop horror story." My "best" story comes from when I was beginning to show symptoms --over 10 years before I was diagnosed. I was around 15 years old, and I was participating in a car wash fundraiser. As usual, my stomach hurt all day, but it was several hours into the fundraiser when I had the "emergency" pains. I quickly excused myself and made a mad dash inside the gas station only to discover there was a line for the women's room. I stood there in a panic. I knew there was no chance I could wait long enough.

When I was finally next in line, I couldn't hold it any longer. The pressure was too intense, and I began crapping my pants... right there in the middle of the gas station. I knew my friend would be able to smell it when she came out of the bathroom, so I made the quick decision to duck into the mens room instead of waiting. I was horrified to discover it had gone right through my swimsuit and left an obvious stain on my shorts.

I quickly undressed and rinsed my clothing as best I could. There was no longer an obvious stain on my shorts, but now the butt was all wet. I devised a plan to dash out of the gas stain and pretend to slip and fall in the first puddle of water I could find which would explain my wet shorts.

It worked! A friend of mine started spraying me with a hose once she saw I was partially wet anyway. No one had a clue.

I never told that story until after I was diagnosed. It made perfect sense why I would have emergencies where I needed a restroom immediately after diagnosis, but definitely not before.

So... I told you mine, and now it's your turn. What's your best poop horror story?

Saturday, May 31, 2014

Thank You For a Great Celiac Disease Awareness Month

Today, is May 31, so it is time for my daily posts to come to an end. Celiac Disease Awareness Month may be over, but that doesn't mean we stop spreading awareness. I would like to thank everyone who followed along with each of my daily posts.

Deciding exactly what I want to do with this blog has been an ongoing question of mine. I've decided it is what it is. I write as an outlet. I write to help others. I write to remember things. I write for a million different reasons.

I don't want my blog to become a source of stress. I don't want to need to meet deadlines. I don't want to have requirements. I simply want to help others, and I truly hope that's what I do whether I write a post once a day or once every three months. I write for me, and I write for you, and that is what I'll continue to do.

I encourage everyone to do what they are able to continue spreading awareness, but please don't stress yourself out doing so unless you're enjoying.

Celiac Disease Awareness Month - May 31, 2014

Each day this month, I will be posting something about Celiac Disease.

Day 31:

Did you know that most physicians learned during medical school that celiac disease was so rare that it was unlikely they would ever see a patient throughout their career?

The purpose of Celiac Disease Awareness Month is to spread awareness. This information is most certainly known to be wrong today. It is important that awareness be increased with individuals so they can advocate for themselves, but also with doctors so they can diagnose individuals quickly and correctly.

What did you do to raise awareness this month?

Friday, May 30, 2014

Celiac Disease Awareness Month - May 30, 2014

Each day this month, I will be posting something about Celiac Disease.

Day 30:

Have you ever heard of any of the following terms:

Gluten Sensitivity
Non Celiac Gluten Sensitivity
Gluten Intolerance

Recently, these conditions have come under scrutiny due to a researcher discrediting their existence. If you haven't heard of them, basically they are thought to be conditions where the individual suffers negative repercussions from the ingestion of gluten, but they do not test positive for celiac disease.

What is your opinion on this matter?

Thursday, May 29, 2014

Celiac Disease Awareness Month - May 29, 2014

Each day this month, I will be posting something about Celiac Disease.

Day 29:

Today's info comes from WebMD.

Who should undergo antibody blood tests for celiac disease?

Experts in the U.S. recommend antibody blood tests for people who have a higher likelihood than normal of having celiac disease. They include those with:
  1. Chronic diarrhea (diarrhea that does not resolve in three weeks), increased amount of fat in the stool (steatorrhea), and weight loss
  2. Excess gas, bloating, and abdominal distension
  3. Parents or siblings with celiac disease
  4. Growth retardation
  5. Unexplained iron deficiency anemia, or deficiency of folate and vitamin B12 
  6. Skin blisters that are itchy (dermatitis herpetiformis)
  7. Recurrent, painful mouth sores (aphthous stomatitis)
  8. Diseases associated with celiac disease, such as type I (insulin-dependent) diabetes, autoimmune thyroid disease,  rheumatoid arthritis, systemic lupus, ulcerative colitis, etc.

Wednesday, May 28, 2014

Celiac Disease Awareness Month - May 28, 2014

Each day this month, I will be posting something about Celiac Disease.

Day 28:

A common misconception is that those who have celiac disease are allergic to gluten. This is not true. Celiac disease causes an autoimmune response, not an allergic response. With that being said, many people refer to it as an allergy as that is a more commonly understood term. There is a common misconception that those who have celiac disease will just get a "tummy ache" if they ingest gluten. While they won't suffer an allergic reaction, most suffer from the repercussions of ingesting gluten for several days or weeks along with other long-term repercussions with repeated ingestion.

Tuesday, May 27, 2014

Celiac Disease Awareness Month - May 27, 2014

Each day this month, I will be posting something about Celiac Disease.

Day 27:

A couple days ago I talked about life expectancy for those with celiac disease. Today, I'll share two pieces from the faq's page from the University of Chicago Celiac Disease Center.

What do people with celiac disease die of to increase the mortality rate?

Increased mortality rates in those with celiac disease are due to an increase especially, but not exclusively, in intestinal lymphomas. Also, other gastrointestinal cancers seem to be more frequent and contribute to an increased in the death rate for those with celiac disease.
Fortunately, many see their increased rate of cancer decrease to that of the general population once on a strict, gluten-free diet.

Does the risk of intestinal lymphoma decrease once diagnosed with celiac disease and on a gluten-free diet or are you still at a greater risk?
It appears that the risk remains high for about 1-2 years after diagnosis, and then drops down to the same level as the general population. 
The doctors I spoke with after my diagnosis were quite certain I would have developed intestinal lymphoma if I hadn't been diagnosed. Seven colon polyps were found during the colonoscopy that was performed at the same time as my endoscopy.

I don't know about anyone else, but the idea of cancer scares the crap out of me. It's also the reason I don't understand why people intentionally "cheat" on the diet.

Monday, May 26, 2014

Celiac Disease Awareness Month - May 26, 2014

Each day this month, I will be posting something about Celiac Disease.

Day 26:

Some individuals with celiac disease continue to experience recurring symptoms. According to the website for the Celiac Disease Foundation (CDF), the most common reason is continued gluten ingestion.

The most common reason for persistent symptoms is continuing to ingest gluten, either knowingly or unknowingly.  Patients are encouraged to meet with a dietitian knowledgeable about celiac disease and the gluten-free diet to learn about the “hidden” source of gluten.

Did you discover you were still unknowingly ingesting gluten after you started the gluten-free diet? What was the "offending" product?



Sunday, May 25, 2014

Celiac Disease Awareness Month - May 25, 2014

Each day this month, I will be posting something about Celiac Disease.

Day 25:

Last year at this time, there was no FDA standard for products that stated "gluten-free" on the label. For those who missed it, or would like a refresher for the standards that go into effect in August of this year, here is the info from the FDA website.

How Does FDA Define 'Gluten-Free'?

In addition to limiting the unavoidable presence of gluten to less than 20 ppm, FDA will allow manufacturers to label a food "gluten-free" if the food does not contain any of the following:
  1. an ingredient that is any type of wheat, rye, barley, or crossbreeds of these grains
  2. an ingredient derived from these grains and that has not been processed to remove gluten
  3. an ingredient derived from these grains and that has been processed to remove gluten, if it results in the food containing 20 or more parts per million (ppm) gluten
Foods such as bottled spring water, fruits and vegetables, and eggs can also be labeled "gluten-free" if they inherently don't have any gluten.
The regulation will be published Aug. 5, 2013 in the Federal Register, and manufacturers have one year from the publication date to bring their labels into compliance. Taylor says he believes many foods labeled "gluten free" may be able to meet the new federal definition already. However, he adds, "We encourage the food industry to come into compliance with the rule as soon as possible."
Under the new rule, a food label that bears the claim "gluten-free," as well as the claims "free of gluten," "without gluten," and "no gluten," but fails to meet the requirements of the rule would be considered misbranded and subject to regulatory action by FDA.
Those who need to know with certainty that a food is gluten-free are heralding the arrival of this definition. "This is a huge victory for people with celiac disease," says Levario. "In fact, that's the understatement of the year."
Says Taylor, "FDA's 'gluten-free' definition will help people make food choices with confidence."

Saturday, May 24, 2014

Celiac Disease Awareness Month - May 24, 2014

Each day this month, I will be posting something about Celiac Disease.

Day 24:

There is some great news for those with celiac disease who adhere to a strict gluten-free diet. Many studies* have been done and all indicate that those who have celiac disease who adhere to a strict gluten-free diet can expect the same life expectancy as a similarly situated individual without celiac disease.

The bad news? Those who remain undiagnosed or do not adhere to a strict gluten-free diet can expect a life expectancy approximately ten years shorter than a similar situated individual without celiac disease. They can also expect to live their lives with a myriad of symptoms and other health problems.


*studies include those conducted by Dr. Joseph Murray and Dr. Alessio Fassano

Friday, May 23, 2014

Celiac Disease Awareness Month - May 23, 2014

Each day this month, I will be posting something about Celiac Disease.

Day 23:

Today's post comes from the website for the University of Chicago Celiac Disease Center's faq's page.

What common nutrient deficiencies might an adult experience prior to diagnosis?

Iron, calcium and Vitamin D are the most common deficiencies, but some present with deficiencies in B12, copper, folate, magnesium, niacin, riboflavin and/or zinc.
Nutrient deficiencies associated with celiac disease are due to intestinal damage caused by protein in wheat, rye and barley. In most cases, nutrient deficiencies that were caused by damage from celiac disease will naturally resolve as your intestine heals.
Many gluten-free dieters choose foods that aren’t fortified with vitamins and minerals like their gluten-containing counterparts. Thus, we suggest a general multivitamin to prevent against nutritional deficiencies.
Did you suffer from any nutrient deficiencies prior to your diagnosis?


Thursday, May 22, 2014

Celiac Disease Awareness Month - May 22, 2014

Each day this month, I will be posting something about Celiac Disease.

Day 22:

For those who are newly diagnosed with celiac disease, I highly recommend contacting the University of Chicago Celiac Disease Center about their Gluten-Free Care Package program.

If you or your child has been diagnosed with celiac disease through a biopsy in the past 12 months, you may qualify to receive a Care Package, click here for more information.

I love what the University of Chicago does, and I think it's amazing that they've been able to keep this program going through the generosity of individuals and companies.

Did you or someone you know receive a care package from this program?

Wednesday, May 21, 2014

Celiac Disease Awareness Month - May 21, 2014

Each day this month, I will be posting something about Celiac Disease.

Day 21:

Celiac disease is an autoimmune disorder. Having one autoimmune disorder causes you to be more likely to have another. Examples include, but are not limited to type 1 diabetes, rheumatoid arthritis, lupus, and thyroid disease.

Have you been diagnosed with additional disorders besides celiac disease?

Tuesday, May 20, 2014

Celiac Disease Awareness Month - May 20, 2014

Each day this month, I will be posting something about Celiac Disease.

Day 20:

Have you ever heard of a rotation diet? Individuals with food sensitivities/intolerances/allergies should do their best to avoid eating the same items too often as it can lead to additional sensitivities/intolerances/allergies. For those with celiac disease, the most common items that individuals tend to overdo are corn and soy.

Did you develop additional sensitivities/intolerances/allergies as a result of eating them too often?

Monday, May 19, 2014

Celiac Disease Awareness Month - May 19, 2014

Each day this month, I will be posting something about Celiac Disease.

Day 19:

There are many items that most individuals wouldn't think contain gluten, but they do. Two of the most common are soy sauce and licorice. Thankfully, there are gluten-free versions of both.

Which items were you surprised contained gluten?

Sunday, May 18, 2014

Celiac Disease Awareness Month - May 18, 2014

Each day this month, I will be posting something about Celiac Disease.

Day 18:

What is the easiest way to shop gluten-free? Stick to the outside of the grocery store. Typically, that is where you will find naturally gluten-free foods such as fresh vegetables, fruit, meat, and dairy.

I still remember my first shopping trip, and I was near tears every time I was in an aisle because every product had gluten in the ingredients. It didn't occur to me that keeping it simple would have been easier.

Did you stay on the outside of the store when you first started a gluten-free diet?

Saturday, May 17, 2014

Celiac Disease Awareness Month - May 17, 2014

Each day this month, I will be posting something about Celiac Disease.

Day 17:

I've spent the last two days describing the origins of celiac disease. Today is exciting because it includes the first link between celiac disease and wheat.

In the 1950's, Willem Karel Dicke, MD discovered the link between the ingestion of wheat to celiac disease. Dicke and several colleagues were able to confirm the treatment. They also "described the histologic damage to the intestinal mucosa as being directly related to celiac disease."

What do you think it was like to live with celiac disease prior to the 1950's? Do you know anyone who was diagnosed prior to 1950?


*Information obtained from the University of Chicago Celiac Disease Center and the Celiac Sprue Association

Friday, May 16, 2014

Celiac Disease Awareness Month - May 16, 2014

Each day this month, I will be posting something about Celiac Disease.

Day 16:

Yesterday I described the very first mentions of celiac disease. Today, I would like to recognize Samuel Gee who was the first to link diet as a treatment for celiac disease in 1888. At that time, there was still no link to which foods were causing the condition. Despite that, National Celiac Disease Awareness Day is celebrated on September 13th, which is Gee's birthday.

What do you think of the fact that these fairly simplistic findings were discovered less than 150 years ago?  


*Information obtained from the University of Chicago Celiac Disease Center and the Celiac Sprue Association

Thursday, May 15, 2014

Celiac Disease Awareness Month - May 15, 2014

Each day this month, I will be posting something about Celiac Disease.

Day 15:

For the next few days, we're going to go back to the beginning of how celiac disease was discovered.

The first mention of celiac disease was in the 2nd century. 18 centuries would pass before a cause was identified. Arataeus of Cappadocia first wrote of a condition he saw in his patients which he referred to as "koiliakos" (Greek) which means "suffering in the bowels" in 250 A.D. Over 1600 years later, his writings were translated from Greek to English, which was when the term "celiac" was first described.

Question of the day: Are you surprised to hear there were discoveries so early? When did you think celiac disease was first discovered?



*Information obtained from the University of Chicago Celiac Disease Center and the Celiac Sprue Association


Wednesday, May 14, 2014

Celiac Disease Awareness Month - May 14, 2014

Each day this month, I will be posting something about Celiac Disease.

Day 14:

So what can you eat if you're on a gluten-free diet? Amazingly, you can eat a lot, but if you're overwhelmed, then I have always recommended keeping it simple.

All fresh fruits, vegetables, and meat are gluten-free. Yep, every single one of them. The easiest way to start a gluten-free diet is to eat items that are naturally gluten-free.

Do you agree that it's easiest to stick to a gluten-free diet when you eat items that are naturally gluten-free?

Tuesday, May 13, 2014

Celiac Disease Awareness Month - May 13, 2014

Each day this month, I will be posting something about Celiac Disease.

Day 13:

Earlier this week, I described the diagnosis process for celiac disease. Today, I'd like to talk about why it is so important.

First, I understand the frustration of the process. There are so many ways for the process to go wrong--usually due to errors made by medical professionals. In their defense, it is usually because they don't understand the process correctly themselves. It is common for the wrong blood tests to be ordered or too few biopsies to be taken during the endoscopy. This is only two possibilities out of a multitude of others.

The most common question people ask is why they should be put through the testing process when they could simply start a gluten-free diet and see if they feel better. The reason the "gold standard" diagnosis is important is because it is possible to feel better on a gluten-free diet and not have celiac disease. The gluten-free diet could cause a temporary relief of symptoms for other conditions which would prolong the diagnosis. That could cause serious medical repercussions.

Unfortunately, all three steps are needed for proper diagnosis also. The blood test could be positive, but without damage to the villi in the small intestine, the positive test more than likely is caused by something else. If the blood test is negative, but there is damage to the villi, then it is more than likely caused by something else. The third step of determining the response to the gluten free diet is vital to confirm it is actually celiac disease, but it is very rare to have a positive blood test and biopsy and not have celiac disease.

There is currently no single test to 100% confirm celiac disease.

Now I'm going to add my opinion in here. I think that if you have "typical" symptoms of celiac disease, but your blood test and/or biopsy were negative and doctors are unable to find any other cause, I think it is perfectly acceptable to try a gluten-free diet to see what happens.

Do you agree or disagree with me?

Monday, May 12, 2014

Celiac Disease Awareness Month - May 12, 2014

Each day this month, I will be posting something about Celiac Disease.

Day 12:

Dermatitis Herpetiformis (DH) is the skin manifestation of celiac disease. It is a rash that is a mixture of bumps and blisters that is due to the autoimmune reaction from the consumption of gluten.

Compared to the diagnosis process for celiac disease, the diagnosis process for DH is quite simple. A simple skin biopsy can be performed which will confirm the condition. The treatment is a strict gluten-free diet, which is the same as celiac disease. A skin ointment called Dapsone is also often prescribed to help with the rash.

Unfortunately, it seems there is even less awareness of DH by medical professionals. This could be due to the fact that only about 25% of those with celiac disease have it manifest as DH rather than with gastrointestinal symptoms. If you run the numbers, that means only about 1 in 400 people have DH.

I was incredibly disappointed to see the National Institute of Health's (NIH) website contained blatantly incorrect/outdated information concerning DH. One quote from their website:
There is no known prevention of this disease. People with this condition may be able to prevent complications by avoiding foods that contain gluten.
That information is at the very least misleading. It seems that when it comes to DH, the medical community would rather prescribe Dapsone to assist with the rash than advise their patients to consume a strict gluten-free diet which would mean no rash in the first place.

Do you know anyone with dermatitis herpetiformis? What is their story?

Sunday, May 11, 2014

Trip To The Emergency Room

I've been to the hospital a few times since I've been diagnosed with Celiac Disease, but I've never been in such severe pain that I couldn't advocate for myself. Thank goodness for my husband being amazing.

So here's the story...(fair warning, I'm including some graphic detail)

Recently on a Friday morning, I had to pee twice before work, and then again when I got to work. The urgency seemed like it was from a UTI, but that was the only symptom of a UTI. I seemed fine the rest of the day so I didn't think much of it. The urgency came back with a vengeance around 8pm. I would no more than get out of the bathroom, and I had to go again. I couldn't handle waiting more than 10 minutes between trips even though it was never more than a few dribbles.

I headed to bed around 9:30 because the left side of my back was starting to hurt, and I figured I wouldn't have to pee if I was sleeping. The pain began to get worse, so my husband brought me a heating pad. Five minutes after the heating pad warmed up, the pain was suddenly unbearable. I was crying out in pain because it was so bad.

I still needed to pee every five minutes, but it was nearly impossible to make it from my bedroom, through the living room, through the dining room, through the kitchen, and into the bathroom. I finally talked my husband into bringing me a garbage can that I could squat over right next to the bed (I'm not proud of this). I was also dealing with bouts of nausea, so I also had a bucket to puke in next to me.

At some point in this process, I became incredibly nauseous. At that point, I had to pee constantly, I thought I was going to puke my guts out, I had a horrendously painful pain in my back, and a horrendously painful pain in my lower left side. My poor husband didn't know what to do to help me, and we kept discussing me going to the hospital, but every time I've gone to the ER in the last five years, they've been unable to do anything for me and sent me home with instructions to see my regular doctor.

About an hour and a half after trying to go to bed, I went back to the bathroom with the thought that a change of scenery would help. It didn't. I immediately vomited into the bathtub. While my husband cleaned the bathtub, I laid a towel down on the floor and curled into a ball on the floor. A few minutes later, I told him it was time. We needed to go to the ER because something had to be seriously wrong for me to be in that much pain and vomiting. I went to the bathroom one last time, and he helped me to the car.



I tried to keep quiet, but I was still crying out in agony as we walked in. I was completely hunched over, so I wasn't able to see where I was going because my head was down. I don't remember much about getting checked in and the triage process except that it seemed incredibly quick while taking forever. I remember sitting down in a wheelchair and being annoyed that they made me put my feet on the footrests because it hurt so much to move, and I wanted to just let my feet hang. I remember signing something that I had no intention of reading and thinking my signature looked nothing like my signature. I remember they had to take my blood pressure more than once, and the pressure of the cuff on my arm was excruciating. I remember saying over and over again that I needed to use a bathroom, and they kept telling me I could soon. I remember them asking me what my pain level was on a scale of 1 to 10, and I almost said 9 because I was so afraid I would jinx myself if I said 10 and the pain would get worse. I remember crying out in agony throughout the whole process and hoping that no one I knew would see me.

They wheeled me immediately from triage to a room, and I asked for a commode along the way because I really needed to pee. They said they'd get me one soon. When I got to the room, they had me lay down on a bed, and I asked for the commode again. They said they needed a urine sample, so I'd have to wait a minute. I finally agreed to walk to the bathroom with my husbands assistance because I needed to go so badly. They gave me a cup to pee in and a wipe as I went in. I didn't care if I gave them a bad sample at that point, and I knew there wouldn't be much, so I wiped as best I could and caught everything. The whole thing amounted to filling about a centimeter of the cup. Once I was back in the room after peeing, I begged for a commode again because I already had to go again.

I don't remember the order of events exactly, but the doctor came in somewhere along the line soon after I was put in a room. I felt horrible because he would push on one spot, and I'd get a random wave of pain that had nothing to do with what he was doing and I'd cry out in pain. I could tell he was having a really hard time actually examining me. I was curled up in a ball laying on my left side, and I knew he needed me on my back. I remember him asking if I had ever had a kidney stone, but I don't remember much else about the exam.

I remember a different nurse coming in for something after the doctor left, and my husband talked him into getting me a commode. Meanwhile, a nurse put in an IV, and I guess they drew blood too. I  remember warning the nurse that I have horrendous veins when they came to put the IV in, and bless whoever it was for getting it on the first stick. I was relieved to be able to use the commode, but I noticed blood in the IV, and I had to go again immediately after using it anyway. I thought the IV was hooked up to fluids, but I guess I wasn't connected to anything yet. My husband was able to calm me down about the blood in the IV, but I don't remember how.

As I laid down from using the commode, the nausea hit me again, and I begged for something to vomit in. I'm thankful my husband had brought something along from home because there weren't any nurses nearby. I was horrified to discover I was vomiting food I hate eaten over 6 hours earlier.

A minute later, the pain in my back and my side suddenly got horrifically worse. My cries of agony suddenly turned to screams. I felt horrible to be making such a scene, but I couldn't help it. I remember saying I just wanted to pass out and I needed something to make it stop. I also remember the nurse saying something about my pain level hitting 35 instead of 10. I have no idea how long of a time span it was between vomiting and the nurse coming in with pain meds, but my husband said he thought my vein was going to burst considering how fast she pushed it through the IV. She told me it was Dilaudid, and I was going to experience 10 seconds of horrific chest pain and then my head would feel really funny. The chest pain was so bad I thought I was going to die, but she kept her calm and told me to count to 10 and it would be over. Thankfully, she was right, but I have no idea what kind of fuss I made while it felt like I was having a heart attack on top of the back and side pain.

The meds kicked in quickly, and brought my pain level down to about a 5 or 6 within a minute. I was incredibly grateful for the reprieve from the pain. It was amazing how it didn't seem so bad anymore even though I would have thought it was horrible had I not been at a pain level of 10 just minutes before. They also gave me an anti-nausea medicine, which I was very thankful for.

It was then that I realized our car was still parked in front of the ER entrance, so I told my husband he should probably move the car to the parking lot so it wouldn't get towed. The pain meds had also relieved much of my anxiety, so I was ok by myself for a short while.

A short while later, they came to get me to have a CT scan done. I was completely loopy from the pain medicine at that point. As they wheeled my hospital bed down the hall, I asked the nurse if a doctor I knew was working. I felt like I sounded drunk, so I decided to shut up after that, and I was thankful he wasn't there.

It was a relief when I was able to move myself fairly easily from the hospital bed to the table to have the scan done.

I didn't have to wait long for a diagnosis. The doctor came in to tell me that I had a 2mm kidney stone just above my bladder. He said it should move into my bladder fairly quickly, and then it would just bounce around in there for a while until I peed it out. I questioned how long I would be in pain, and he said it wouldn't affect me once it was in my bladder. However, it would possibly cause a few seconds of pain when I did pee it out.

The doctor explained that I couldn't work for two days, and I needed to stay home and rest those two days. I was given a filter that I was supposed to pee into until I passed the stone so that I could have it tested to determine what it was made from. The type of stone would determine if I needed to make a change to my diet and how likely it would be for me to have another. I asked why I had the symptoms I had, and he said that I needed to pee constantly because the stone was causing bladder spasms which made it feel like I needed to go. The vomiting was due to the extreme pain I was in. The pain was because the stones have jagged edges, and it was traveling through the ureters and hitting the edges.

He prescribed me four medications. Two pain medications, an anti-nausea, and a prostate medication. The prostate medication would open up the ureters and urethra to allow the stone to pass more easily. The anti-nausea was to be taken the second I was nauseous to prevent future vomiting. The pain medications were to be taken regularly to prevent pain. I was told that if I started feeling pain again, it would already be too late.

I didn't bother asking the doctor if the medications were gluten-free as I figured he wouldn't know. I did mention it to the nurse as I was being discharged, and I almost laughed because she went on the internet and found a list of gluten free prescriptions and printed it out for me. I had seen the list before, but it's not something I've ever relied on because I know manufacturers change prescriptions constantly. My purpose in asking the nurse was I figured if they did know anything, they could modify the medication being prescribed prior to me leaving the hospital.

I was discharged approximately an hour and a half after arriving at the hospital. I was shocked when my husband told me how long we had been there. Despite the quickness, I wanted nothing more than to go home because I was exhausted. Unfortunately, we needed to fill my prescriptions so that I could maintain the pain medication. One of them was a narcotic, so I couldn't simply send my husband to fill them for me. I was not happy to hear there were only two pharmacies open past midnight, and both were across town.

The movement of the car caused my nausea to come back, and I wanted nothing more than to go home and lay down in my bed or at least sit in the car rather than going into the pharmacy.

The pharmacist wasn't much help when it came to whether or not the prescriptions were gluten-free either. He was able to check the manufacturer information, and each of them basically said that they didn't contain gluten, but they couldn't guarantee against cross contamination in the fillers. He recommended I simply try them and see if I got sick. I told him I would do additional research on my own as ingesting gluten meant being sick for two weeks, which I couldn't allow to happen.

I discussed it with my husband on the way home, and he agreed that it was probably a negligible risk. I am incredibly sensitive to gluten, but research indicates someone can safely ingest 20ppm gluten. All four medications were on the gluten free list, which I would never rely on, but it did help that it had been confirmed at some point. Even if one of them did contain gluten, it would have been a matter of cross contamination to the filler which would mean a microscopic amount. I was supposed to take each of the medications with food, so that would decrease the ppm.

I never had a reaction to gluten, for which I am incredibly thankful. It's been a few weeks, and as far as I know I haven't passed the stone. The filter I was given fell apart after the first day. I began peeing into a container, but I had to discontinue that once Monday morning rolled around because I wasn't about to do that at work. I assume it passed without me noticing at some point, but for at least a week, I was nervous every time I went to the bathroom.

So that's my story. I'm still frustrated by it, but I'm no longer surprised at how hard it is to get information about the gluten-free status of medications. You would think that the manufacturers of prescriptions would realize how important it is to have ingredient information available for those with intolerances and allergies due to the negative health repercussions of ingesting them. I often wish I could simply take all medications via IV because then I wouldn't have to worry about gluten content because I wouldn't be ingesting them.

Do you have any emergency room or hospital stories? What was it like finding out the gluten-free status of medications being prescribed?