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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Not New Here,......blood Testing Question.
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Marc49    2

Don't know how many remember me from awhile back, but I am in need of having a question answered.

Little bit of history first.

I was diagnosed with IBS a long time ago, and had symptoms that seemed to match. I ended up going to a functional medicine type doc a few years ago, and for some reason he ordered a gene test through Enterolab.

It came back positive, and I was told to go gluten-free right away. I did this, and roughly 2/2011 I ended up having a colonoscopy and EGD done.

My GI doc said I showed no signs of celiac disease through biopsy, or any problems with my villi.

He basically called the other doc a quack, and said I could return to a regular diet.

Long story short,......I ended up staying gluten-free for about a full year, but didn't really feel any different to be honest.

I slowly started back to eating my old diet, which is quite healthy, but does include gluten. Eating a turkey, tomato, and cheese sandwich on rye bread as I type.

My point is the fact I have never been tested via a blood sample.

I brought this up to my primary care doc in January, but he said that the blood tests were basically worthless, and wouldn't confirm/deny a thing.

Is this true?

If not, and I insist, he will order the tests and my insurance will cover it. I am simply trying to find out what the truth is in my case.

DO I have a gluten intolerance, or don't I?

DO my stomach issues, and arthritis pains come from gluten, or just a result of other issues, and a lot of hard physical work that I have done in my life.

If someone could answer this question, and tell me what blood tests are applicable, I would appreciate it very much.

BTW,.......no problem with not being 'glutened up' per se. I have been eating without restriction for many months now. I'm full of the stuff by now! :)

Thanks.

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mushroom    1,205

You do not state how long you had been gluten free (if, in fact you were) when you had your EGD. If you had been solidly gluten free at that time then the test was invalid and you need the blood tests and, if positive, another EGD. These are the tests:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

The blood tests are definitely not worthless. Some doctors will diagnose upon positive results and a positive response to the diet; others require the biopsy confirmation. The blood tests can tell you whether you should undergo another biopsy.

Best wishes in finding your answers :)

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Marc49    2

You do not state how long you had been gluten free (if, in fact you were) when you had your EGD. If you had been solidly gluten free at that time then the test was invalid and you need the blood tests and, if positive, another EGD. These are the tests:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

The blood tests are definitely not worthless. Some doctors will diagnose upon positive results and a positive response to the diet; others require the biopsy confirmation. The blood tests can tell you whether you should undergo another biopsy.

Best wishes in finding your answers :)

Gene test results 1/19/2011,........I joined here 1/21/11, and my EGD was done 2/9/11.

Since I came here looking for advice on going gluten-free, I would say I 'may' have been gluten-free totally for possibly a week at most.

I really appreciate the list of blood tests, and will get this done as soon as i can.

You understand,......I just want to know. IF I have IBS and arthritis, so be it. If I have gluten intolerance that is part of this, then I need to accept it and do what I need to do.

Thanks much! :)

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Marc49    2

Mushroom,.....hate to bug you again, but did you see my last post?

Would a week at most gluten-free fully, or partially impact my EGD biopsy results?

Thanks again.

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mushroom    1,205

Mushroom,.....hate to bug you again, but did you see my last post?

Would a week at most gluten-free fully, or partially impact my EGD biopsy results?

Thanks again.

No Marc, sorry, I missed your post yesterday. It is possible that that week had absolutely no effect on your EGD and biopsy results. It is equally possible that you are NCGS (non-celiac gluten sensitive). Or that your GI did not biopsy the right spots. With celiac unfortunately there is a world of possibilities. But celiac gluten intolerance and non-celiac gluten intolerance of course both mean NO GLUTEN. While one might also give you relief from arthritis pain (as it has me to a great extent, in combination with NO NIGHTSHADES) I agree it would be interesting to get the blood results and see what they say. Knowledge is good, if it is to be had. And by the way, a gluten free diet sometimes takes a long time to do its job, often depending on how long gluten has been doing ITS job.

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Marc49    2

Thanks a lot Mushroom for the reply.

All I can say is I remember the GI doc saying he took quite a number of samples for biopsy. I would have to pull my paperwork to be able to comment further than I have.

I am going to get the blood tests done next month, and it will be interesting to see the outcome. I hope that Quest Diagnostics handles these, as it is where I am supposed to get blood work done under my insurance policy.

I have had a number of blood tests done that are meant to show inflammation in the body, and they have all been negative. I remember CRP, and ANA for two,......very low.

Doc actually tested my uric acid level as well thinking possibly I was having a small amount of gout in my joints. Another negative, as I was barely above the low normal point as in 4.5 IIRC.

I see all the things you have given up, and can't imagine how you manage to eat to be honest.

Myself,......about the only thing I don't eat is soy. I love tomatoes, and sauces made from the same. Can't imagine how this could be an issue, as I have eaten them my entire life.

When I was a young child, I was supposedly allergic to milk for a period of time.

I started back on it about 12 years of age, and it seemed the problem had disappeared. I rarely drink milk, but I DO love cheese in moderation.

How did you find out you had issues with all of these food items?

Are there tests for these as well, or did you just keep eliminating things from your diet to find out on your own?

To finish up, after some thought,......I was gluten-free for very close to a year and a half.

It was late summer 2012 that I started slowly adding gluten back into my diet, and within a month I was back to eating exactly like I did before. I have been eating gluten everyday for 6 months or so now, and I assume that is plenty of time for the blood work.

Hopefully those tests will confirm/deny something for me.

I just don't know whether I have a gluten/food allergy issue, or I really have IBS. My arthritis could be easily explained since I have been a contractor for 30 years, and my body has been through a lot of wear and tear.

I don't get the symptoms that a lot of you folks seem to have, such as skin issues, itching, brain fog, etc.

Mine is mainly a rumbling gut with constantly changing bowel habits that did not go away while I was gluten-free.

Sorry for my rambling novel, but I appreciate your time very much!

Best to you. :)

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guest134    6

The associated Celiac genes are present in 30 percent of the world population while Celiac disease itself is present in about 1 so perhaps that is why your GI called the other guy a "quack".

According to the University of Chicago Celiac disease center blood tests will provide with false negatives 1-2 percent of the time and false positives 2-3. A lot of doctors are against the blood tests because of the higher false positive rate, which can go higher than 20 percent in certain population samples (I.e- Type 1 diabetes patients). http://www.cureceliacdisease.org/archives/faq/is-it-possible-to-have-a-positive-blood-test-but-not-have-celiac-disease

Given the stress and anxiety that comes with false positives many doctors will choose against the blood tests to avoid scaring the patient and having them go through an unnecessary procedure. Infections that are not even part of the intestinal system have been shown to give transient rise to the Tissue transglutaminase ab's. If you had a small infection recently that may have not been large enough to notice and your body just fought it off you run the risks of these elevations.

Now to say blood tests are completely useless is very wrong. Proper interpretation of the blood tests is what is crucial, if the numbers were very low positive and you had a recent infection it would be best to wait a couple of months and retest. If the numbers were very high positive (5-10 times the range) and you have screaming Celiac symptoms then some doctors will go ahead and diagnose you upon symptom resolution and antibody decline after going gluten free.

Also keep in mind that Celiac disease is not always so blatant. My G.I went on a rant on how ignorant doctors are on the disease and how he has had many patients with little symptoms and some nutritional deficiencies upon diagnosis of completely flattened villi. If I were you I would get the tests that mushroom mentioned and be sure to bring us back results for some interpretation. Good luck! Hope you feel better soon!

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Marc49    2

The associated Celiac genes are present in 30 percent of the world population while Celiac disease itself is present in about 1 so perhaps that is why your GI called the other guy a "quack".

According to the University of Chicago Celiac disease center blood tests will provide with false negatives 1-2 percent of the time and false positives 2-3. A lot of doctors are against the blood tests because of the higher false positive rate, which can go higher than 20 percent in certain population samples (I.e- Type 1 diabetes patients). http://www.curecelia...-celiac-disease

Given the stress and anxiety that comes with false positives many doctors will choose against the blood tests to avoid scaring the patient and having them go through an unnecessary procedure. Infections that are not even part of the intestinal system have been shown to give transient rise to the Tissue transglutaminase ab's. If you had a small infection recently that may have not been large enough to notice and your body just fought it off you run the risks of these elevations.

Now to say blood tests are completely useless is very wrong. Proper interpretation of the blood tests is what is crucial, if the numbers were very low positive and you had a recent infection it would be best to wait a couple of months and retest. If the numbers were very high positive (5-10 times the range) and you have screaming Celiac symptoms then some doctors will go ahead and diagnose you upon symptom resolution and antibody decline after going gluten free.

Also keep in mind that Celiac disease is not always so blatant. My G.I went on a rant on how ignorant doctors are on the disease and how he has had many patients with little symptoms and some nutritional deficiencies upon diagnosis of completely flattened villi. If I were you I would get the tests that mushroom mentioned and be sure to bring us back results for some interpretation. Good luck! Hope you feel better soon!

That you very much for that added information. :)

I tested low on B-12 one time, but I attribute that to my long term use of Nexium for GERD. I was on 40mg a day for roughly 5 years. I then cut my dosage to the 20mg pill against my GI docs wishes, and have done fine.

Funny thing is my B-12 went up after going back to a normal diet, but I also realize it may have something to do with the lower PPI dose,....who knows to be honest.

I have also gained weight since not being gluten-free any longer. I thought a sign of celiac, or gluten intolerance was unexplained weight loss?

Keep in mind I am not eating a 'non-healthy' diet by any means.

Have already faxed that list of blood tests to my doc, and they said I can pick up the order whenever I want to. I will be very interested to see the results. Personally, I consider 2 to 3% false positives to be quite low.

Thanks again for any and all info posted. I just want to know for certain,......as much is possible, that I am not doing damage to myself, and I simply have IBS.

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