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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.

Lots Of Symptoms, But Negative Diagnosis
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I have a daughter, almost 13, who is always tired. Always. She also has enamel spots on her teeth, gets canker sores all the time, seems to have low bone density with as many issues as she's had, and has been declared "failure to thrive". She only weighs 76lbs. She also gets headaches all the time. Her doctor suggested getting tested for Celiac. The blood test revealed an iGa deficiency, which threw the test results out the window, I guess. We then saw a GI doctor. She had an endoscopy with biopsies this past Tuesday. The results show no Celiac Disease. She did, however, come out of it with pneomonia! It has been a horrible experience!!! My gut tells me I should still see a dietician. I have 2 othe younger daughters... one is 11, and the other is 8. The 11yr. old has the typical gastrointestinal issues and was told she has IBS. We had blood work done on her, but are still waiting for results. My 8yr. old has headaches almost nightly, stomachaches, and yellow teeth. She also seems to be getting more ADHD by the day. Her blood work revealed the same iGa deficiency as my oldest. What do I do!?!? I do not want to go through any more endoscopys based on my oldest daughter's horrible experience!!! Plus, she got a negative result. They all have symptoms!!! Am I crazy!!

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Call both doctors and get the test results. The IgA antibody tests may not be helpful, but the IgG ones can still tell you some useful information. You can also check the endoscopy report to find out if there *was* something to find but not "enough" for the GI to diagnose celiac.

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I agree you absolutely need written copies of all test results; maybe he did not do any IgG tests? Is there any family history of either GI problems or autoimmune diseases like thyroid, arthritis, diabetes, etc.?

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I would also have you younger children tested. IBS is a symptom and not a cause, the cause could be celiac. ADHD is often food linked too. What's Eating Your Child is a great book that discusses how diet affects behaviour; you might want to take a look at it.

My three boys all tested negative for celiac but like your daughters, they had varying degrees of gluten intolerance symptoms. We decided to make them gluten-free along with me because eating gluten-free can't hurt (as long as you don't replace wheat with sugar laden gluten-free substitutes at every meal), it could help them feel better, plus it was easier if everyone ate gluten-free in the house from a food prep point of view.

Even though my boys had negative tests, two of them have shown real health and behaviour improvements on the gluten-free diet. My oldest is putting on a bit of weight and growing, has less headaches and stomach aches, and his mood and concentration has really improved. My youngest used to have to visit the bathroom for bm's 5 to 8 times a day and now he's down to 1-3 and has grown a LOT.

I mention all of that to encourage you to try the gluten-free (and possible dairy-free) diet for a few months once your daughters' testing is done regardless of the outcome. Non-celiac Gluten Intolerance is much more common that celac is, and could be causing their health problems.

Best wishes.

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Ok, I will get the test results from the doctors. There is history of Barrott's Esophogus, colon cancer, Crohns, Diabetes, GERD, Diverticulitis.........as far as Celiac Disease goes, no one in our families has a diagnosis. (doesn't mean it's not there)

Thank you!

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I would also have you younger children tested. IBS is a symptom and not a cause, the cause could be celiac. ADHD is often food linked too. What's Eating Your Child is a great book that discusses how diet affects behaviour; you might want to take a look at it.

My three boys all tested negative for celiac but like your daughters, they had varying degrees of gluten intolerance symptoms. We decided to make them gluten-free along with me because eating gluten-free can't hurt (as long as you don't replace wheat with sugar laden gluten-free substitutes at every meal), it could help them feel better, plus it was easier if everyone ate gluten-free in the house from a food prep point of view.

Even though my boys had negative tests, two of them have shown real health and behaviour improvements on the gluten-free diet. My oldest is putting on a bit of weight and growing, has less headaches and stomach aches, and his mood and concentration has really improved. My youngest used to have to visit the bathroom for bm's 5 to 8 times a day and now he's down to 1-3 and has grown a LOT.

I mention all of that to encourage you to try the gluten-free (and possible dairy-free) diet for a few months once your daughters' testing is done regardless of the outcome. Non-celiac Gluten Intolerance is much more common that celac is, and could be causing their health problems.

Best wishes.

Thank you! That's what I think is going to happen....waiting to talk to regular pediatrician tomorrow

Peg

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Have you thought about genetic testing? It might not get a dx, but it can give a clue, as it were. Its also possible that NCGI (non-celiac gluten intolerence) can be causing this too.

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    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
    • Confused
      I have not. I'll talk to my doctor about it
    • High Positive Test Results - Your thoughts please...
      With blood results like these, your husband most definitely has Celiac Disease.  The biopsy is just to check to see how much damage.  Keep in mind that even with high, high test scores like these, damage can still be patchy. Although I would be very surprised if they didn't find enough with numbers like these!  Thank goodness he was able to have a definitive diagnosis and reason for his symptoms!  Good luck!
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