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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 FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

How Many People Are Actually Self-diagnosed?
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124 posts in this topic

I am new around here. All my tests results were negative, yet I know there is something wrong and I believe it relates to gluten. ( I am in the process of doing stool testing with enterolab).

I want to know how many of you celiacs are actually biopsy-diagnosed and how many of you are "self-diagnosed" celiacs or gluten intolerant individuals.

My drs. basically sent me away saying "you have IBS, go home and take immodium, you don't have celiac". When I asked them if they had any "non celiac gluten intolerant" patients they said, "no". That says a lot. I dont' believe it though.

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My doctors have ignored me for years. I didn't know that Celiac/gluten intolerant even existed. It wasn't until I had a random visit with a new chiropractor who within ten minutes told me I had a gluten problem. After ten years and thousands of dollars in tests, I was reluctant to believe him. I did the glutenfree diet for 30 days, thats all he asked of me. Why not, couldn't hurt....I am here to say that most of my problems went away especially the migraines and the vertigo. I have my life back thanks to that chiropractor. I followed up with enterolab and results pointed that I have the gene.

I am disgusted with doctors and forever grateful to my chiro.

Good luck with your future health, you are your best advocate.

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I am new around here. All my tests results were negative, yet I know there is something wrong and I believe it relates to gluten. ( I am in the process of doing stool testing with enterolab).

I want to know how many of you celiacs are actually biopsy-diagnosed and how many of you are "self-diagnosed" celiacs or gluten intolerant individuals.

My drs. basically sent me away saying "you have IBS, go home and take immodium, you don't have celiac". When I asked them if they had any "non celiac gluten intolerant" patients they said, "no". That says a lot. I dont' believe it though.

Hi my name is Ted. I diagnosed myself long before I had my colonoscopy and endoscopy done. I was in severe pain especially on my lower right side and kept being told by my primary care physician that it was just anxiety. After 10-11 months of this I demanded to be seen by a gasto enterologist and in the mean time I was searching frantically on the internet for what could be causing me my pain.

I narrowed it down to Celiac or Candida Albicans ( yeast ). I was diagnosed on July 14th 2008 with Celiac Disease.

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I was a diagnosed sufferer of IBS and fibromyalgia for at least 29 years; it was only after I was diagnosed with rheumatoid arthritis that I began my research, found out that ankylosing spondylitis (another autoimmune rheumatoid disease) was treated with a gluten free diet and wondered if it would work with RA too, that I came to this way of eating. Then found out that I had been misdiagnosed all these years, that I am most certainly celiac (have celiac relatives) but was not going back on gluten just to have some doctor say, duh, oh yeah, you do have celiac disease, not fibromyalgia and IBS.

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The percentage is much higher than you might think. Doctors give us the run around, most never even suspecting celiac. It is getting better, they are much more aware now. 9 years ago when I went gluten free, they were thinking celiac was extremely rare. My sister is a diagnosed celiac, 9 years ago last March. Her doctor thought celiac was extremely rare too, and was shocked to find her having this extremely rare disease.

I was gene tested last June...double DQ1 genes, considered the gluten intolerant/neuropathy genes, which means, both of our parents have at least one DQ1 gene. My sister has never been gene tested. I wasn't financially able to be tested, no insurance, nor money at that time. I would love for her to be gene tested, just to see what genes she has. Our father is gluten intolerant too, and his doctor's told him he is not celiac...we know he has one DQ1 gene. Our mom is not gluten free, and we know she has at least one DQ1 gene. Quest Labs tell me I can't be celiac because of my genes, my PCP tells me he doesn't care what Quest says, I am celiac, my neuro says I have gluten ataxia.

http://medicine.med.unc.edu/education/inte...CeliacSprue.pdf

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The percentage is much higher than you might think.

I think this is true. My boss suggested to me that I might be having a problem with wheat. He's an MD, does this mean I'm doctor-diagnosed?

When I told a friend how much better I felt without gluten, she immediately took it out of her diet and started feeling better. It never even occurred to her to ask the medical system what she should be eating.

She's now convinced her mom to cut out gluten. Same thing. And mom doesn't see any point in asking for testing.

And what about all those Atkins people? How many of those that stick to the diet do so because the lack of gluten has made them feel better, and they don't even realize that that's what it is.

Or people like my brother and SIL who just don't eat "carbs" because it makes them sleepy.

Lots of different starting points coming to the same conclusion - gluten makes me feel bad.

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I want to know how many of you celiacs are actually biopsy-diagnosed and how many of you are "self-diagnosed" celiacs or gluten intolerant individuals.

Went in for a routine colonoscopy and ended up blood and biopsy diagnosed celiac.

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I think that you will find a larger portion of members here self-diagnosed or have a spectrum of gluten intolerance, than those with MD diagnosed Celiac Disease.

It would be interesting to run a poll.

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You could possibly have celiac but the doc just didn't find it--its not always so easy to find. Or you could have a high degree of gluten intolerance. Gluten intolerance is common actually, more common than celiac which is one out of 133 more or less. It is also said 42% of the American public has some kind of gluten sensitivity. So your doc is apparently not up on this question. You may need to educate him, get a dif. doc or just self diagnose. Bottom line, if you feel better without it, don't eat it. And if you go completely off even all trace gluten for a while and then get what we called cross contamination with trace gluten and you actually react badly to it, then it is very likely you have celiac...

Bea

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I worked it out with the help of a friend and was diagnosed by biopsy/antibodies 12 months later

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I was diagnosed by the GI specialist. Never saw it coming either, in regards to suspecting this. Had my own symptoms for months that started with possible IBS, to something else, then had a biopsy done with the intestine and came back with that.

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it's not as clear as "biopsy-diagnosed" or "self-diagnosed". There is a lot of area between those two. For instance, some doctors will diagnose based on just blood work, or even just a positive response to the dietary change. It's not a black or white line, because testing is just not that reliable in a disease as complex as this one manifests.

I would call myself doctor-approved self-diagnosed. I had inconclusive (but not quite negative) blood test results after being strictly gluten free for two weeks, but had a positive result from the gluten free diet, and experienced a recurrence of the same symptoms when I did a gluten challenge. My doctor took all the details down, said "well, if it bothers you, don't eat it. I'd consider you're likely celiac."

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I was diagnosed as an infant due to failure to thrive when introduced to grains. I was put back on them at age four however and grew so they thought I literally had grown out of it. However my health proceeded to have difficulties ever since. I finally figured it out due to extreme sensitivity to gluten. Previously I thought it was an allergy but found out it was far more. Last year I asked my mother if this famed "failure tho thrive" syndrome I had as a baby was related to celiac (since I had heard this referred to with celiac)--and she finally admitted I had been diagnosed as an infant. Ouch!! If only they had told me years earlier....

Bea

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I am new around here. All my tests results were negative, yet I know there is something wrong and I believe it relates to gluten. ( I am in the process of doing stool testing with enterolab).

I want to know how many of you celiacs are actually biopsy-diagnosed and how many of you are "self-diagnosed" celiacs or gluten intolerant individuals.

My drs. basically sent me away saying "you have IBS, go home and take immodium, you don't have celiac". When I asked them if they had any "non celiac gluten intolerant" patients they said, "no". That says a lot. I dont' believe it though.

Wow! That's pretty much me too. I bounced around different specialists who all gave up and came to the conclusion, after multiple pregnancy tests because I looked 4 months pregnant all the time, that I had IBS. They told me to take benefiber-made from wheat- and essentially suck it up. I went to my little brother's endocrinologist-he has Addison's- and we went through the elimination and reintroduction diet. It was hell. I knew then that the gluten was definetly making me sick because after only a few days going gluten free, my bloat went away and I was regular again. Additionally, my skin sores when away. However, when it came time for the reintroduction, I only made it 7 days. Bringing back the bloat was more than I could bear. Because of this, my doctor says I didn't sufficiently build back up my antibodies. In any case, once all of my doctors saw the improvement in my bloat, skin, constipation, and abdominal pain, they all agreed that I should remain gluten-free. I think IBS is the most grandiose cop out to avoid taking the time to diagnose serious life-threatening conditions. Many of my family members have Crohn's and they had to fight for their doctors to give them the time of day after years of "IBS" and laxatives. People are becoming more aware, but as with anything medical, I suppose, you have to be your own advocate.

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I guess you could say I self-diagnosed about 4 years ago but listened to Doctors who laughed and said it was not possible and couldn't get the tests I asked for. I listened to those I thought all wise and continued on my merry way of eating Gluten and trying to find out what the heck was wrong with me for the next 3 years. Finally, after not being able to get off the bathroom floor for 7 days, my GP stated "Maybe you do have a problem with Gluten." I found a new GI Dr. and while I did not have enough anit-bodies for a positive test (I had been eating very gluten light) he felt due to my extreme positive response to the Gluten Free diet I had a 99% chance of having Celiac Disease. A month later I tested positive for DH which confirmed it for me but I have never had the endoscopy and biopsy done.

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"I think IBS is the most grandiose cop out to avoid taking the time to diagnose serious life-threatening conditions."

To the pp who said this, I TOTALLY agree. IBS is just BS if you ask me. They say it is "functional" that it has no biological or chemical cause. That just proves that they are stupid because your body isn't just sick for no biological or chemical reason. When my GI people handed me the IBS packet and said I was fine I knew instantly that they were full of it. And want to know my FAVORITE line from their little packet?

"Unfortunately , many patients continue to suspect they have an undiscovered disease and pursue repeated consultations from many physicians, which lead to repeated testing and often to one or more abdominal surgeries in hope of obtaining relief from their distress".

Can you believe the nerve of that statement? Unfortunately????? Yeah, I'll say that it is UNFORTUNATE that they are too stupid to know how to correctly diagnose their patients.

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From reading this site, I'd say very few people are diagnosed by a doctor. Most people seem to have to tell the doctors they want to be tested because they (the patient) took the time to find out what was wrong.

I also was told by a doctor at the Chiropractor that I was a celiac. Previous to this, an allergist told me I should just cut out wheat. But only the Chiropractor had a correct diagnosis.

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I had never heard of Celiac until my son was diagnosed 16 months ago. After researching the disease a light bulb went off and I thought that's what might be causing my IBS. I went gluten free before getting tested (big mistake) and my test was negative. My doctor brushed me off but when I persisted he referred me to a wonderful allergist who knew much more about Celiac and food intolerance than he did. She diagnosed me with gluten intolerance and said it was highly likely I had Celiac but the only way to know for sure was to go back on gluten for at least 3 months and have a biopsy. I said no thanks. I ordered gene tests from Enterolab last week so soon I will find out if my daughter and I carry the genes. I know it's not a diagnosis but it's a big piece of the puzzle.

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I am self-diagnosed, I guess. I stoped eating gluten, and then the next time I got glutened, I got the dh rash, so as far as I know the dh rash is a definitive diagnosis. My doc doesn't want me to go back on gluten for tests because I get far too sick and then it'll just screw with life insurance later.

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"I think IBS is the most grandiose cop out to avoid taking the time to diagnose serious life-threatening conditions."

To the pp who said this, I TOTALLY agree. IBS is just BS if you ask me. They say it is "functional" that it has no biological or chemical cause. That just proves that they are stupid because your body isn't just sick for no biological or chemical reason. When my GI people handed me the IBS packet and said I was fine I knew instantly that they were full of it. And want to know my FAVORITE line from their little packet?

"Unfortunately , many patients continue to suspect they have an undiscovered disease and pursue repeated consultations from many physicians, which lead to repeated testing and often to one or more abdominal surgeries in hope of obtaining relief from their distress".

Can you believe the nerve of that statement? Unfortunately????? Yeah, I'll say that it is UNFORTUNATE that they are too stupid to know how to correctly diagnose their patients.

There seems to be some kind of resistance in this country for doctors to even think of celiac as a possible diagnosis. One person told me it was the lack of drugs etc. needed to cure it--those no push by the pharmaceuticals and no real money in it for surgery unless say you get cancer of the gut etc. All I can say is that it is very noticeable absence and very weird. It is an attitude however that is gradually changing--especially now that there is a simple blood test that can indicate if you have the potential to have it or not. An extra reason doc's seem to avoid the diagnosis is that they think its a "fad" plus it creates a very limited diet which they themselves often couldn't imagine following. Pretty crazy, eh? Since for those who do have celiac its not worth being miserable and sick just to fit in and have the usual diet etc. etc.

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I am self diagnosed for monetary reasons. In hindsight, I'm glad I was broke because testing could have taken months and I don't know that I would have had the correct testing anyway. It was such a dramatic turn around on the diet that I've never looked back. All the symptoms including the rashes are gone and an accidental glutening is so dramatic that I have no doubts. My GP doubts but I don't.

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I am self diagnosed. My daughter went gluten free and her IBS went away so I tried it. After one week it became clear that dairy was also a problem so I am now gluten and dairy free 2 and half years. I would not go back! I now have Igg kappa MGUS which is a precursor to Multiple Myeloma. I find it interesting that the cancer is directed at the gluten antibody, not coincidental. Live healthy, don't eat gluten if it makes you ill.

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I am self-diagnosed, also fell into the 'gluten free before testing' trap.

My GP says my tests are fine, there is nothing to label for me (well, except my low D and low-normal iron - hm, connect the dots anyone?)

My OB-GYN says my dramatic dietary response means that I am celiac.

See my signature, various cousins have various degrees of Dr.-type diagnosis.

Label or not, gluten-free is definitely the way to go for my body!

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I was diagnosed first by a co-work/fellow celiac. I didn't believe him. The family doctor sent me to the gastro who said allergies not related to celiacs. Funny thing was I didn't ask him about celiacs. He sent me to the immunologist (allergy dr.). The immunologist (Dr. Horbal) tested me for food allergies. After removing wheat, soy, dairy, and a few other things from my diet it became clear that I was reacting to things like oatmeal with classic celiacs symptoms. Itchy elbows, burning knees, constipation, horrible stinky gas, floating poo. I went back to Dr. Horbal and said I think I have celiacs and showed him my elbows and knees. He walked me to the door, talking the whole way. Handed my chart to the receptionist while writing on his RX pad. He told the receptionist, "The diagnosis is celiacs." Handed me the script with instructions to see a nutritionist. I was shocked. I wanted him to say No, no this is just........ you'll be fine.

So No, I do not have the golden standard of diagnosis but I do have a dr's diagnosis.

My son's dianosis was based on family history (more than just my diagnosis) and symptoms when glutened. So also not the golden standard.

My Mother has IBS and fibro (celiacs?)

My Aunt died of intestinal cancer at age 39.

My Grandmother had chronic "d" and refused to eat anything but fruit because everything else hurt her stomach.

My Great-Grandmother refused to eat anything but popcorn.

If we do a poll it will have to be more involved than just positive biopsy or self-diagnosed.

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I am self diagnosed.

All my tests were negative except the antigliadin tests were very positive.

I've been 12 days gluten free and feel like it is helping.

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