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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.

Testing Please Advise
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6 posts in this topic

My 3 yr old got a referral to see a pediatric allergist today.

I suspect she has issues with gluten.

I need advice on what I need to ask for when we see the allergist. What do I need to know and what do you wish you knew when your kids were getting tested.

thanks

Shannon

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Hmm, there are differences between celiac disease and gluten/wheat allergy. It seems to me that digestive issuses are more common with celiac disease and for that you might consider a gastroenterologist rather than an allergist. Whereas skin issues and other allergy type reactions (hives, breathing difficulty etc.) are more common with wheat allergy, and that would be for the allergist.

What kind of indicators does your daughter have? That might determine what kind of specialist you need to look for?

Also, the only thing our gi specialist did for us was to confirm our peds dx. After that we never really saw him again, and all our checkups go through the ped, so if yours is willing to do the testing for you, you may not need a specialist at all.

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Shannon, When my newborn grandson began having severe reactions to his milk formula, we changed him to soy, and I immediately sent away for Enterolab.com's "full spectrum" home test kit, which tests for whether he carries the Celiac gene (I have Celiac Disease and allergies to milk, dairy, casein, whey, egg whites, and yeast), is gluten sensitive, and is allergic to milk and dairy.

I sent his stool sample and gene swab from the inside of his cheek back to the lab by FedEx, and within 3 weeks they emailed that he carried a copy of the gene for Celiac, was gluten sensitive, and was allergic to milk and dairy.

Since then my husband's and brother's tests have come back negative, but my sister does have Celiac. I am working to get as many people in the family tested as possible. The full spectrum test runs $368 and the gluten sensitive only test runs $118. I trust Dr. Fine to be thorough, since he also has Celiac.

Hope this helps. Always, Welda

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This does help.

Ok here is the story, pull up a chair cause it has been a long three years.

My daughter was born and I exclusively breastfed her. Well she had what the Dr diagnosed as colic. I thought that was bunk and knew there had to be a reason for the gas and crying. My dh has a family history of dairy problems. Lo and behold when I was off of dairy for about two weeks, she was better. So no dairy...fine I can live with that. I went to soy milk.

For a year, it was soy milk for me (still breastfeeding) and no dairy for either of us. Shortly after her first bday, I started noticing signs of food allergy again. Ring around the anus, crying fits and greenish stools. What in the heck could it be??? I was so vigilant. Well after she had a reaction to stir fry one night, I realized it was soy. No more tofu or soy milk. Fine, can live with that.

Well she has always been small. I am a small person (cultural) and my Dh is a small person. No big deal. So she is petite.

But there are other signs that are alarming me... she has diarhea often. She has some pitting at the gumline and chipped a tooth. My Dh and I both have VERY VERY good teeth, we eat a primarily whole foods diet and she does not get candies or typical junk food as I will not let her have artificial colorings in her food. She weighs 26.5 pounds at 3.5 years and is 37.25 inches tall. She is also cranky and says her belly hurts.

I am not sure if the belly thing is true, i think it is sometimes. She has been on this "ooh I am so sick" parade when she has to do something she does not want to. I know part of it is show but I am not convinced that ALL of it is show. She is a very lively and imaginative child.

I am going to ask the allergist for a celiac panel. I need this to come from a Dr. who will gain the respect of my Dh's family. My SIL has a masters in Nutrition, so they all think that my daughter has these problems because she does not get enough calcium from dairy in her diet. I love them very much but they do not believe that she has a problem. Not many of the family members do. My mom let me know that they are freakin laughing at me behind my back. GRRRR!!!!!

Many of them are diabetic, some have died from unexplained kidney failure (with diabetes). UGH!!!!!! anyway, that is the end of my rant.

I know what tests I want done and the doctor is simply a tool for getting them.

thanks again

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Hi

I have a five year old she weighs 35 lbs. I had the same problem no one would believe me when I said she just wasn't right. I continued to take her to the doctors after many visits to the doctors they did a blood test for her it came back positive for celiac. I wish you all the best it took me a year to finally get her diagnosed (two blood test, both positive and a biopsy later) they discovered her Villi was completely flat. Ronnis's symptoms:no weight gain, white floaty stool, diarehea,vomiting, fevers, muscle and joint pain and black rings under her eyes. I hope this information helps ask your doctor for a blood test.

Hillary

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Thank you Hilary!

I know what I want and wont stop till I get it.

Our consultation appt is in 2 weeks and I cannot help but to cut down on the gluten foods.

I know I am not supposed to.

UGH! I am so confused. We eat a VERY healthy diet. I am the "wholefoods freak" in our family and think that I provide very well for my families diet. But all of this is really making me doubt myself.

I have a hard time getting dd to eat and today we went to a bday party. They had hotdogs. She has not had bread in a very long time. well she snarfed down this HUGE nathan's beef hotdog in NO time. She behaved as if she had not eaten in days. I almost wanted to cry. We do not eat hotdogs here because I cannot bring myself to buy processed meat. But now I am second guessing myself.

My mother in law insists that it could be that we eat too much fiber. I am just so confused about food anymore. For a moment, I wondered if perhaps I made "normal" kid food she would eat it. I mean, am I doing her a disservice by giving her nuts and huumus with veggies as snacks???

I hate this and I feel like I am failing my daughter. I just want some answers.

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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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