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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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tchntm43

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I am 35. For most of my life, I have struggled with a low body-weight for my height. It seemed like I could not gain fat or muscle. I remember eating an entire large pizza in high school despite that I weighed only 105 lbs (I am male and 5'5"). This had no effect on my weight. My regular doctor always told my mom I just had a high metabolism. This continued until I was around 25. I started gaining a little more weight, and got up to 125. Then around 30 I went up to 140-ish. The gained weight is mostly fat around my abdomen. I still have just as much difficulty gaining muscle tissue as before.

The past few months, I have been feeling very exhausted. In addition, my body is producing a lot of very bad gas. I have realized that this seems to coincide with a time when I've been eating a lot of pasta and bread. I've been getting a heavy gluten dose with almost every lunch and dinner. Prior I had been eating a lot of rice for months, both with lunch and dinner, and had very little gluten in my diet. The only reason I made the change is I was bored with my diet and wanted to do something different for a while. Although from time to time I would still eat a sandwich for lunch or order out for dinner.

I had a similar incident about 7 or 8 years ago where I was exhausted for an extended period of time. I cannot remember if I had the gas with it, or what my diet consisted of at the time. Back then I had suspected lyme disease as a the culprit, and the symptoms actually went away before I got tested for that, so I went on as though nothing had happened. And I think I may have had another incident about 5 years ago, but much reduced in duration and how exhausted I felt. I thought that might have been mono, but that came back negative and also went away on its own. Again, I have no idea about diet and any changes to it.

I should mention that around the start of this current episode of exhaustion, I came down with shingles. I went to the doctor to confirm that and it went away in about 2 weeks.

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How is your height compared to family members? Is your entire family on the shorter end of the scale or just you? I must say if fatigue is your main culprit with eating heavy pastas and such I would think of a blood sugar issue (not necessarily diabetes) before celiacs.

To me, these are your gluten alert symptoms:

Your height

weight

Excess gas

Those are very vague issues that can occur in many diseases as well as just normal people who go through bouts of stomach issues. If I go on a high protein diet I will pass a lot more gas and very smelly gas at that.

Do you have any other stomach issues? You could always test to be sure anyway.

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Welcome!

While I agree your symptoms could be caused something other than Celiac Disease or Non-Celiac Gluten Intolerance -- I think it is very important to have a full celiac blood panel while you are still consuming gluten. Should these tests all be negative, it would be wise to remove ALL gluten for a period of three months (six is better) as elimination is the only test for NCGI which has many similar and quite serious symptoms of Celiac Disease.

Nutritional deficiencies is a strong indicator of Celiac Disease - B12, D and Iron are most common - these are the bare minimum that should be tested. My celiac doc tested all Bs, D, K, Iron, Ferritin, Copper and Zinc at diagnosis along with check ups.

Weight issues and periodic illness over many years is common with Celiac Disease. I had many "flu-type" illnesses that became more frequent over several decades until fatigue was permanent.

You do not need to have severe gastro symptoms with Celiac Disease. My GI issues were minor compared with my autoimmune type symptoms. I did not have severe bloating until my last 3 years prior to diagnosis. Here is the list of symptoms associated:

http://www.curecelia...SymptomList.pdf

Make a list of your symptoms - past and present along with a list of questions and tests you would like to have run. Have this in your hand during your doctor appointment - I find my doctor appointments are far more productive when prepared.

Let us know if you have more questions.

Hang in there :)

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Here is the list of symptoms associated:

http://www.curecelia...SymptomList.pdf

It's funny, I have seen many people reference this list of symptoms but have never read it over. Upon quick review it seems like an alarmist list, like come on they are adding things like crohn's and ulcerative colitis? Not only that, they have pretty much every disease in the book listed from autoimmune to cancers. Obviously celiacs can cause other symptoms other than digestive but there were clearly things added to that list just to be able to label it "300 symptoms of celiacs".

I don't care what disease centre it is, if they were at all professional or even correct they would add foot notes referencing each symptom in clinical setting, I don't see ANYTHING of the sort ANYWHERE to crohns being cause by celiacs and quite frankly if I had the time would probably be able to prove they have no background to at least 50 percent of the symptoms they named. They are going off technicalities, maybe if celiacs was so bad in you that it caused several other autoimmune diseases you would have those symptoms, but that would be a symptom of the new disease caused by celiacs and not celiacs itself. I.E- If celiacs is not affecting your thyroid than I (along with many qualified doctors) simply don't believe it can cause obesity (and have yet to see anything that can prove otherwise).

From my extensive OCD research I have learnt that there is way too much false info being passed around on celiac and gluten sensitivity and too many people are taking what they hear from the next person at face value without validating it themselves, spreading the false info like wild fire (that is not an attack on anyone on this forum, I am speaking in general).

Yes celiacs is underdiagnosed but many of these sites make it sound like 90 percent of the population has the disease, if you were to go off those 300 symptoms you can certainly diagnose the world.

Sorry to derail the thread, let us know if you have any other questions.

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I strive to always say "symptoms associated with Celiac Disease" and "testing should be done to before removing gluten". To the best of my knowledge I have never said a person has Celiac Disease until they report back with an official diagnosis.

For those of us that did go misdiagnosed, undiagnosed or dismissed by a multitude of doctors - until you have walked in our shoes, please don't discourage people from being tested BEFORE they either dismiss the possibility of gluten enteropathy or trial the elimination of gluten.

IMO you are doing them a disservice by dismissing their concerns because they lack "classic" symptoms.

This is certainly not the only testing that should be done in cases of digestive, autoimmune or non-specific symptoms, but certainly should be in the mix.

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I took the 300 symptoms list to be 'associated with' rather than 'causal of' celiac.

Personally I have found this list and similar ones helpful to stitch together for myself all my apparently unrelated symptoms. If I hadn't seen recurrent miscarriage on a similar list I wouldn't have tied my other symptoms together. My GI seems happy with my research.

This is just my personal recent experience, I am not intending to generalize.

I am definitely with GottaSki on getting tested and fully exploring other possibilities. I couldn't do a gluten challenge, so wont get a full diagnosis. My GI is now working on ruling out other things and genetic testing.

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It's funny, I have seen many people reference this list of symptoms but have never read it over. Upon quick review it seems like an alarmist list, like come on they are adding things like crohn's and ulcerative colitis? Not only that, they have pretty much every disease in the book listed from autoimmune to cancers. Obviously celiacs can cause other symptoms other than digestive but there were clearly things added to that list just to be able to label it "300 symptoms of celiacs".

I don't care what disease centre it is, if they were at all professional or even correct they would add foot notes referencing each symptom in clinical setting, I don't see ANYTHING of the sort ANYWHERE to crohns being cause by celiacs and quite frankly if I had the time would probably be able to prove they have no background to at least 50 percent of the symptoms they named. They are going off technicalities, maybe if celiacs was so bad in you that it caused several other autoimmune diseases you would have those symptoms, but that would be a symptom of the new disease caused by celiacs and not celiacs itself. I.E- If celiacs is not affecting your thyroid than I (along with many qualified doctors) simply don't believe it can cause obesity (and have yet to see anything that can prove otherwise).

From my extensive OCD research I have learnt that there is way too much false info being passed around on celiac and gluten sensitivity and too many people are taking what they hear from the next person at face value without validating it themselves, spreading the false info like wild fire (that is not an attack on anyone on this forum, I am speaking in general).

Yes celiacs is underdiagnosed but many of these sites make it sound like 90 percent of the population has the disease, if you were to go off those 300 symptoms you can certainly diagnose the world.

.

My very celiac-savvy GI doctor refers to this symptom/conditions list when evaluating and meeting with new patients.

I know, because I printed it off and gave it to him ---and he was happy to have the handout.

I had about 65 of those symptoms myself. Yes, that's right. And that's how I knew I HAD celiac.

And to clarify, the list is adapted from Recognizing Celiac Disease by Cleo J. Libonati and her book has pages and pages of valid sources and medical references.

The first thing my doc checked me for after DX was Crohn's, inflammatory bowel diseases, ulcerative colitis and intestinal lymphoma.

If you do not know that lymphoma is often caused by long undiagnosed celiac, then you have not done enough reading.

It may not seem "possible" to some people, but celiac (no s, just celiac) is a head-to-toe disease and is often associated with dozens of AI diseases.

Why would a link to other AI diseases be so hard to believe?

They are all fueled by inflammation---- and there is no bigger inflammatory agent than gluten in celiac.

Not all people will have stomach or bowel issues, but instead, they exhibit a host of extra-intestinal symptoms (neurological, reproductive, rheumatological, etc.) that only a celiac-savvy doctor will recognize.

This is why the Celiac Center posted the list in the first place--as a guide.

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The intro to the list: (the bolding is mine)

"Celiac disease is associated with approximately 300 symptoms, which are listed in alphabetical order below. These symptoms are not specific to celiac disease, however, and many may be uncommon. This list is intendend to illustrate the variety of subtle and seemingly unrelated symptoms associated with celiac disease and the resulting diagnostic challenge. The list is not intended to be used as the sole basis for diagnosis."

We were all surprised when my daughter was diagnosed, including the pedGI. He screened her for celiac disease because that had become an office policy for kids that presented with "generic" GI symptoms. The GI told me that prior to that, about three kids a year would come through the office with skinny limbs, distended belly and explosive diarrhea and hey, what do you know, this child has celiac disease. This is what he had been taught to recognize as celiac disease. After they started their new screening process, they were diagnosing about a child a week and he continued to be surprised by which kids tested positive . . . they didn't "look" like celiac kids.

That list helps people think outside of the box.

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It's funny, I have seen many people reference this list of symptoms but have never read it over. Upon quick review it seems like an alarmist list, like come on they are adding things like crohn's and ulcerative colitis? Not only that, they have pretty much every disease in the book listed from autoimmune to cancers. Obviously celiacs can cause other symptoms other than digestive but there were clearly things added to that list just to be able to label it "300 symptoms of celiacs".

I don't care what disease centre it is, if they were at all professional or even correct they would add foot notes referencing each symptom in clinical setting, I don't see ANYTHING of the sort ANYWHERE to crohns being cause by celiacs and quite frankly if I had the time would probably be able to prove they have no background to at least 50 percent of the symptoms they named. They are going off technicalities, maybe if celiacs was so bad in you that it caused several other autoimmune diseases you would have those symptoms, but that would be a symptom of the new disease caused by celiacs and not celiacs itself. I.E- If celiacs is not affecting your thyroid than I (along with many qualified doctors) simply don't believe it can cause obesity (and have yet to see anything that can prove otherwise).

From my extensive OCD research I have learnt that there is way too much false info being passed around on celiac and gluten sensitivity and too many people are taking what they hear from the next person at face value without validating it themselves, spreading the false info like wild fire (that is not an attack on anyone on this forum, I am speaking in general).

Yes celiacs is underdiagnosed but many of these sites make it sound like 90 percent of the population has the disease, if you were to go off those 300 symptoms you can certainly diagnose the world.

Sorry to derail the thread, let us know if you have any other questions.

The lists are made by medical experts to be easy to read by "normal" non-medical people . Copious footnotes, references, etc would make it unreadable to most. If you would like references for every thing on there, maybe you could find a list in medical journals or email the writer of the list?

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I am not dismissing this persons symptoms, I told him to get tested but based on his results it could be other things and to not get so caught up on one disease like I have seen many people do, several different tests are required.

I never said it is not linked to other autoimmune diseases, I said that unless it is causing another one half of those symptoms are irrelevant to new people being diagnosed. By this I mean, if you have celiac but you have tingling in the hands, cold sensitivity, and trouble gaining weight, to test the thyroid and not just throw it into the list of "300 symptoms".

I am also aware that it can slightly increase your chances of lymphoma if left undiagnosed for decades, just like many other things in life.

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