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?

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?

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.

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.

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.

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?

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."

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

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?

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?

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?

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?

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?

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?

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

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

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

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?

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?

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?

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?

Celiac Disease Awareness Month - May 11, 2014

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

Day 11:

I'm not sure how I made it to day 11 of Celiac Disease Awareness Month without explaining the process of diagnosis, but I guess I'll go for it now.

There are three steps to properly diagnose celiac disease. It is important to start the process while consuming gluten for proper diagnosis.

1. Blood test to find gluten autoantibodies. 
2. Endoscopy for biopsy of the small bowel to find damage to the villi. 
3. Begin a strict gluten-free diet to determine effectiveness. 

These steps are known as the "gold standard" diagnosis. Later this week, I'll explain why this process is important. 

What do you think of the diagnosis process?

Celiac Disease Awareness Month - May 10, 2014

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

Day 10:

Support is an incredibly important part of maintaining a gluten-free diet. It can be incredibly isolating, especially at the beginning. Many individuals have a hard time finding support from their friends and family. Support groups are a great way to connect with other individuals who have celiac disease.

There are two non-profit organizations that maintain networks of gluten-free/celiac disease support groups.

Celiac Sprue Association: (CSA) For a list of their support groups, you can click here.

Gluten Intolerance Group: (GIG) For a list of their support groups, you can click here.

There are others that are not part of a larger network, so if you can't find one in your area from CSA or GIG, continue searching to see what you can find.

Do you belong to a support group or are you involved with one in any way?

Celiac Disease Awareness Month - May 9, 2014

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

Day 9:

I apologize today's post is a day late. It's a common misconception that I'm perfect, so I thought I would talk about a common misconception about celiac disease. (Did anyone catch my joke?)

It used to be believed that you could outgrow celiac disease. Doctors commonly thought of it as a childhood disease. Unfortunately, this is not true, and the misconception was based on many factors. Lack of research and flawed research contributed most significantly to this misconception.

It's also unfortunate that many individuals began eating gluten again after they "grew out of it," only to later discover severe negative health repercussions from consuming gluten.

Celiac disease is a lifelong autoimmune disease which has no cure. The only treatment is a strict gluten-free diet.

Do you know anyone who was told they had celiac disease as a child, but they began eating gluten again because they thought they had grown out of it?

Celiac Disease Awareness Month - May 8, 2014

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

Day 8:

Yesterday, I promised to explain oats.

Oats are still a controversial topic, but it is thought that they are cross contaminated in the field or during production due to their close proximity to other gluten-containing grains. It is recommended that those with celiac disease only consume oats that are certified gluten free to ensure they were not grown in or processed in close proximity to other gluten-containing grains. Even then, many individuals with celiac disease cannot tolerate oats, so they should avoid them.

Do you or are you able to consume oats? Are you careful to ensure you only consume certified gluten free oats?

Celiac Disease Awareness Month - May 7, 2014

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

Day 7:

We're going back to the basics again today. Yesterday, I gave the definition of gluten from Merriam-Webster. Today, I'll tell you what gluten is in.

Gluten includes wheat, barley, and rye.

Simple enough, right? Why do you see this as an overly simplistic explanation?

Tomorrow, I'll touch on the topic of oats.

Celiac Disease Awareness Month - May 6, 2014

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

Day 6:

Today, we're going back to the basics. I did something that even I've never done before. I looked up gluten in the dictionary. Thanks to merriam-webster.com, I was able to get the following definitions:

Merriam Webster definition:
a substance in wheat and flour that holds dough together
full definition: a tenacious elastic protein substance especially of wheat flour that gives cohesiveness to dough
origin of gluten: Latin glutin-, gluten glue

Medical definition of gluten:
a gluey protein substance especially of wheat flour that causes dough to be sticky

Concise encyclopedia definition:
Mixture of proteins not readily soluble in water that occurs in wheat and most other cereal grains. Its presence in flour makes production of leavened baked goods (see baking) possible because the chainlike gluten molecules form an elastic network that traps carbon dioxide gas and expands with it. The properties of gluten vary with its composition, which differs according to the source. Thus, doughs range from soft and extensible to tough and elastic, depending on the gluten in the flours. Persons with an allergy to gluten can often eat rice or spelt products.

Does this help you to understand celiac disease better? Why or why not?

Celiac Disease Awareness Month - May 5, 2014

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

Day 5:

I'd like to once again touch on how common celiac disease is because I finally found a statistic that really helps to put things in perspective.

Have you ever heard of crohn's disease?
Have you ever heard of ulcerative colitis?
Have you ever heard of cystic fibrosis?

Do you know anyone who has any of these conditions? Had you ever heard of celiac disease prior to being diagnosed?

Why do I ask?

In 2003, the University of Maryland Medical Center discovered that celiac disease is more common than crohn's disease, ulcerative colitis, and cystic fibrosis combined. Surprised? I know I was.

If you'd like to read more from this study, you can find the original link here.

Celiac Disease Awareness Month - May 4, 2014

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

Day 4:

Have you ever heard of the celiac iceberg? In short, it's meant as a way to describe the number of undiagnosed individuals. Yesterday, I gave the prevalence of celiac disease (which is approximately 1 in 133 individuals). Today comes the shocker. Only about 1 in 10 of those who have celiac disease have been diagnosed.

This is one of the major reasons awareness is so important. There are numerous factors that affect this statistic, but increased awareness can help the undiagnosed individuals to receive the diagnose (and to feel better via a gluten-free diet).

Do these numbers surprise you? What do you think of these statistics?

Celiac Disease Awareness Month - May 3, 2014

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

Day 3:

How common is celiac disease? The current figure is 1 out of every 133 individuals have celiac disease. This figure increases to 1 out of 22 if you have a first degree relative with celiac disease. 

This figure also changes based on ethnic heritage with range from 1 in 80 to 1 in 300.

Recently, medical professionals have hypothesized that the actual figure is 1 in 100, but the new figure has not been widely accepted yet. 

Comparisons:
Currently, about 1 in 10 individuals have diabetes.

Currently, about 1 in 150 individuals have a peanut allergy. 

Which figure do you generally quote when asked? Do the comparisons surprise you?

Celiac Disease Awareness Month - May 2, 2014

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

Day 2:

What happens when someone with celiac disease ingests gluten you ask?

I visited the National Institute of Health website again for the answer to that question:

When people with celiac disease eat foods or use products containing gluten, their immune system responds by damaging or destroying villi—the tiny, fingerlike protrusions lining the small intestine. Villi normally allow nutrients from food to be absorbed through the walls of the small intestine into the bloodstream. Without healthy villi, a person becomes malnourished, no matter how much food one eats.
Celiac disease is both a disease of malabsorption—meaning nutrients are not absorbed properly—and an abnormal immune reaction to gluten. Celiac disease is also known as celiac sprue, nontropical sprue, and gluten-sensitive enteropathy. Celiac disease is genetic, meaning it runs in families. Sometimes the disease is triggered—or becomes active for the first time—after surgery, pregnancy, childbirth, viral infection, or severe emotional stress.

How do you describe it when someone asks how gluten affects you?

Celiac Disease Awareness Month - May 1, 2014

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

Day 1:

The first step to awareness is understanding the basics, right? That is why I'm defining celiac disease. This information comes from the National Institute of Health website:

Celiac disease is a digestive disease that damages the small intestine and interferes with absorption of nutrients from food. People who have celiac disease cannot tolerate gluten, a protein in wheat, rye, and barley. Gluten is found mainly in foods but may also be found in everyday products such as medicines, vitamins, and lip balms.

This is quite the simplistic definition, but there might not be a simple way to define it.

How do you define celiac disease?