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.

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 ;)

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?

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.... ;)

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.

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.

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.