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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.

Need Some Help...(very Long)
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I am a mommy to 6dc. I have Hashimoto's and my middle dd does as well. I am posting for some direction.

Our 3yo ds has multiple food allergies. When he was about 13mo, he was tested and wheat was positive, but much lower compared to all of the other foods that he was positive to. We kept wheat in his diet for awhile, but eventually took it out due to vomiting and diarhea. We tried Spelt and he screamed all day long. I took wheat out, but gave him other glutenous grains. He would not eat rye after while. Barley was the only grain that he seemed to sometimes tolerate. I began reading about wheat allergy and gluten intolerance. About this time, he developed a blistering rash on his bottom. I took him to the ped and he dx impetigo. After two unsuccessful courses of antibiotics, I decided to treat it on my own. Several people told me that impetigo is highly contagious. None of the other 7 people in the house ever had it. I read about impetigo and noticed that he did not have the classic yellow oozing and crusting. I DID notice a usual pattern. I could see places on his bottom where I knew the sores were going to come up before they were sores. Then the sores would come, blister, then were open sores, and finally they would heal and then go away. The more I read, the more they sounded like DH. At this point, I took him off of gluten entirely and the sores disappeared. Last Jan, we did a wheat challenge as both his skin test and RASTs were neg. He did well until the end when he became very irritable, but I chalked it up to the fact that eating a box of plain shredded wheat and being stuck in the drs office all day is not fun. We came home and began feeding him wheat. I had to make everything that he ate due to his allergies. We did this for several weeks. I noticed a behavioral change in him, but though it was most likely due to his age (2yo at the time). I have episodes of flu-like symptoms and pain (which we are not sure of the cause) and so I was unable to make wheat foods for him for 2wks. At about the 2wk mark, I suddenly noticed that ds was happy!! Looking back, I saw how he had been rolling on the floor crying. I would pick him up and he was unconsolable. He would bite my other children for no reason. When I commented to dh, he said "I am sure he was having abdominal pain!!" He has once again been gluten free since. My allergist wants ds on wheat. I really want to have him tested, but I know he needs to be on wheat. I have 3 other children (all on wheat) who I am concerned about, but nothing they have warrents a scope IMHO. One dd has been tested twice with the Ttg test and was found to be normal. I stil wonder about her. She is below the 5th % for height.

I gave him wheat for the first time today in a long time. I have decided that I will give him wheat until I see problems and then we will go to the ped and talk. I hate to see him go through this, but I feel it is what I need to do :( How long before I can expect to have a valid test? Should I keep a diary? How do I convince the ped to test him after I have put him back on wheat? I am hoping that if ds comes back pos, then we can figure out if this is the problem with my other kids.

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one note---you might want to see a GI instead of an allergist as Celiac and DH is an autoimmune disorder, not an allergy.

I'm sure there are others on here who can offer more advice.

good luck!

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Please keep in mind that allergies and celiac are very different (apples to oranges). Have you talked to a gi doc? Also keep in mind that if your dd was off of gluten her test results will not be accurate.

I am so sorry to hear of your struggle. As a parent I know first hand how horrible it is to watch your children suffer. Do some research and talk to a good gi doc who understands celiac. Then take a deep breath and do the best that you can do. That is all any of us can do.

Hez

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I do know that Celiac and Allergy are different. The problem we are having is that all allergy tests are coming back neg. The pos test was only sligthly pos and I suspect it was a false pos. His reactions have never been immediate and are all GI (mostly lower GI). I am not sure what IS going on. I have read about gluten intolerance that is NOT Celiac. At this point I would really like to rule it out or find out for sure what is the problem. The allergist is no help with this problem and is pressuring us to give him wheat. I can't see a GI without the ped telling us to. I have decided to give it to him, but I need to know how long it is necessary before the test is valid. I do believe that wheat could be a problem without him having Celiac, but with the wierd blistering rash and the Hashimoto's and other Autoimmune diseases in the family, I am suspicious.

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has your child been tested for Celiac? Or only allergies?

If he has Celiac, a wheat allergy test will come back negative.

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If he's getting dermatitis herpetformis, don't bother with the endoscopy, have the sores biopsied by a good dermotologist. If he's got DH, he's got celiac, and he's got to stay gluten-free. If he doesn't have DH, he could still have celiac, but regardless of symptoms, he'd need to be eating wheat for three months to have a reasonable confidence that a endoscopic biopsy will pick up intestinal damage. The skin test and RAST tests mean absolutely nothing when testing for celiac disease, though, so they never could have told you anything.

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If he's getting dermatitis herpetformis, don't bother with the endoscopy, have the sores biopsied by a good dermotologist. If he's got DH, he's got celiac, and he's got to stay gluten-free. If he doesn't have DH, he could still have celiac, but regardless of symptoms, he'd need to be eating wheat for three months to have a reasonable confidence that a endoscopic biopsy will pick up intestinal damage. The skin test and RAST tests mean absolutely nothing when testing for celiac disease, though, so they never could have told you anything.

Thanks so much for this reply. This answers some questions. If the rash returns, I will definitely be speaking to the dr about it and asking for a biopsy. I know I should have asked way back then. I am sure if ds gets sick from the wheat that the dr will listen to me when he sees how he gets.

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another little tidbit that you might already know....if it is dh/celiac, the problem is gluten, which is found in wheat, rye, barley, malt, and oats.

so something that is wheat free does not necessarily mean it is gluten free!

gluten can also be hidden in many places (soy sauces, modified food starch, etc)

good luck, we are all rooting for you!

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Sorry I misunderstood your post. I have heard that you need to be eating gluten for 3 months to get a accurate blood test. My Mom's test came back boaderline because she had gone gluten-free before the test (about 2 months gluten-free). There are several families that have decided to change their kids diet without a firm diagnosis. Based on history and behavior alone. I can only imagine how frustrating this is for you. I am sorry.

Hez

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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
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