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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.

Latest Adventure With Ped Gi
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According to celiac blood test (not complete panel) 4 years ago and negative endoscopy biopsy results last September, my daughter does not have celiac disease. After being in pain for years and having "unexplained" failure to thrive, growth hormone deficiency, pancreatic insufficiency, chronic gastritis, mouth ulcers, constipation, etc., we put her on a gluten free diet in March after Enterolab results indicated gluten sensitivity. The change in how she feels, looks, etc. has been phenomenal.

I don't want to make this post too long but we switched back to our original Ped GI doc and he was not the one who scoped her. He has suggested that we put her back on gluten and rescope to see if she does indeed have celiac disease.

She has been through so many tests (cystic fibrosis, h.pylori, growth hormone tests, gi endoscopy, MRIs of head and stomach, etc.) that I don't want to put her through a gluten challenge and another scope. A couple of times that she has gotten glutened over the past six months, the pain has been horrible for her (crying for hours). I feel like she is starting to "heal" and adjusting to a gluten free way of life so why put her though this process again. I said no to a rescope. Am I wrong?

By the way, since going gluten free her pancreatic insufficiency test has come back normal, constipation is no longer an issue, and no mouth ulcers. Her stomach aches have gone from 5-6 per week to an occasional stomach ache. I feel like we have our answer but it seems like since I figured it out when the doctors could not, they seem less inclined to believe it. Why can't her positive response to gluten free diet be enough?

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If you were to sentence someone in a court of law to eat gluten when they do not tolerate it, I believe that would be classified as cruel and unusual punishment. And yet that is what your doctor is proposing for your little girl. How many chances do doctors think we should give them to "get it right".

You seem to have made the diagnosis to your satisfaction and I am sure to your daughter's satisfaction. If I were you I would tell the doctor that it is obvious that she is gluten intolerant and if they couldn't find celiac disease before, she either does not have it or they did not do enough blood tests or take enough samples during the scope (how many did they take?) They are not going to get a "do over" at your daughter's expense. I would also ask him to give you a letter diagnosing her as gluten intolerant that you can use when necessary during her schooling.

This is all, of course, dependent on your not needing the diagnosis of celiac for some reason.... I am just stating how I feel about it. And you did not mention how long a challenge he was proposing. But it still sounds barbaric with the symptoms she has had.

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No, you are not "wrong."

Because the doctor knows you have insurance that will reimburse him for screwing up her diagnosis again, because now the chance of it being negative is even higher, you did the right thing.

What a sadistic son of a .......... <_<:angry:

This is the equivalent of going to a new doctor 7 months after recovering from an infectious disease, and the doctor saying

"why don't we re-infect you with the bacteria, and then I can run a culture and treat you with a better (more $expensive$) antibiotic."

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I agree and think you were absolutely correct to refuse the repeat endoscopy. Aside from being cruel - there is no guarantee that a challenge would produce positive biopsy results - while it would certainly harm your daughter's health.

Should you find you need a diagnosis for school or other reason in the future - perhaps you can try a GI that specializes in Celiac Disease - or even her primary doctor may be willing to provide proof of diagnosis based on her history. I can tell you that we have not had to provide any documentation for my kids that tested negative, but had severe health problems resolve once gluten-free.

Perhaps the doctor would like to consume a just a little ground glass each day so we can check if there is any damage after a few months ;)

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Thanks Mushroom. That is exactly how I feel. I just wanted confirmation that I was not being crazy for refusing to put my daughter through that. I cannot stand the thought of going back to how she used to feel.

My main goal is to have documentation when needed for school. With or without the scope, I believe the GI doctor will work with us on that.

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Thanks Takala and Gottaski. I have to admit, I was surprised that he even suggested it after my going over all the issues that have resolved after going gluten free.

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No, you are not "wrong."

Because the doctor knows you have insurance that will reimburse him for screwing up her diagnosis again, because now the chance of it being negative is even higher, you did the right thing.

What a sadistic son of a .......... <_<:angry:

This is the equivalent of going to a new doctor 7 months after recovering from an infectious disease, and the doctor saying

"why don't we re-infect you with the bacteria, and then I can run a culture and treat you with a better (more $expensive$) antibiotic."

LOL, we are on the same page. The phrase that came to my mind was "No )(%$^**( way!

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I'm with you. I made a very similar decision to not do a scope with a gi who had proven herself ignorant of celiac. When she called me and said, "I've never seen a child get a negative blood test and then get a positive biopsy but I GUESS it does happen", I just knew I didn't want this person scoping my child and profiting from it. I'm sure she has sent tons of celiacs away from her practice because she doesn't believe they can have it and/or doesn't know how to recognize it. Honestly I don't want her to have my insurance company's money or mine!

So I decided to switch to a specialist in Celiac. I'll go see her but it will be another month. I couldn't get in for an INITIAL visit any sooner than a month, which would mean another month for a scope. I just tested positive for celiac. My son has it. I wouldn't have him keep eating paint to see if the paint has lead in it. He'll go gluten-free for six months and we'll observe him. If a doctor doesn't diagnose based on that, I'll keep looking for one who does!

OP, I'm feeling a little uncertain too because I like to follow the rules. But seeing your post about your daughter's progress (my son is very similar) gave me hope. And you reminded me what really matters, the health of our kids. Thanks for that!

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    • Hi Michael and welcome The celiac diagnosis process can be a little confusing. Some time ago I tried to put together some info and links that may be of help:    The key point would be to stay on gluten until you and your doctors are satisfied that celiac has been excluded. In your case that may include another test with a more complete panel as CyclingLady says above. If you go gluten free independently during this time you risk invalidating the results and adding to uncertainty. The second suggestion would be that should you succeed in eliminating celiac as a diagnosis then you have nothing to lose from trying the gluten free diet. I tested negative on blood and endoscopy, but removing gluten resolved or greatly improved a whole load of symptoms including anxiety, depression and that feeling of not being right that you outline above.  I say greatly improved because I can still suffer from anxiety or depression, as anyone can, but if I do, they're nowhere near as severe as they were when I was consuming gluten.  In the meantime, one thing you could do is to keep a food journal to see if you can track any relation between what you eat and how you feel. It's good practice for if you later try the gluten free diet and you never know what you may learn.  This is a good site full of friendly help and advice. I hope you get the help you need  
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    • Good advice Ennis!  I would add baking and freezing some gluten-free cupcakes to have on hand, so that she is never left out.  Be sure to read our Newbie 101 tips under the coping section of the forum.  Cross contamination is a big issue,  If the house is not gluten free, make sure everyone is in board with kitchen procedures.   Hopefully, your GI talked about the fact that this AI issue is genetic.   Get tested (and your TD1 child).  TD1 is strongly linked to celiac disease.  About 10% of TD1's develop celiac disease and vice versa.  Get tested even if you do not display any symptoms.    http://www.cureceliacdisease.org/screening/ https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/
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    • We are not doctors, but based on the results you provided, you tested negative on the celiac screening test.  You could ask for the entire celiac blood panel to help rule out celiac disease.  The other IgA that was high?  It normally is given as a control test for the TTG IgA test (meaning if the celiac test results are valid).  In your case, the TTG IgA test works.  Outside of celiac disease, you might have some infection.  Discuss this with your doctor as he has access to your entire medical file.  I would not worry about it though over the weekend!  
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