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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.

Help With Toddler Symptoms?!
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Hi, Everyone.

I'm new to the group but not to the exciting world of food allergies and intolerance, unfortunately. My two year old son can claim quite a collection of food allergies and intolerances. His food issues were so extensive that he literally stopped eating solid food by 11 months old, refusing anything but formula. It's taken us over a year to get back on track.

For most of his life, he's been gluten-free. He had an immediate and obvious reaction to a few mouthfuls of wheat cereal when he was about 10 months old. He didn't really have wheat again until the past few months. He seemed okay when we reintroduced--but then I began doubting after vague symptoms surfaced, and so I pulled gluten again. He was gluten-free again for a few weeks. After consulting our nutritionist, we decided to re-trial gluten beginning last Thursday. He's only had small amounts: one piece of sprouted spelt bread once a day, at varying times (sometimes at breakfast, sometimes lunch or dinner). That's it.

For four days, we saw no symptoms at all. On Monday night, though, he woke up screaming after a few hours of sleep. He was violent, confused, and furiously upset. It took us an hour to calm him and get him back to sleep. This happened again on Thursday night, but it was even more terrifying of an episode, and it took two hours to settle him. He finally ate some granola and fell back asleep. It was as if he had some kind of hypoglycemic reaction. On Wednesday evening and again tonight (Friday evening), he had really terrible temper tantrums that resembled these nighttime events. It takes a long time to settle him, and he's violent, inconsolable, and incoherent during these episodes.

The strange thing is that he otherwise seems okay during the day. He's with a babysitter all day, and she's had not a single problem with him all week. He's pleasant as can be, eats well, naps well, and has no behavioral issues. She's been shocked to hear what he's been like at night. He's perhaps a bit gassier than usual. But it's otherwise just these later evening and nighttime issues that we're noticing.

So, my questions are: Does this seem consistent with a gluten intolerance? Have any of you had similar experiences? And do children ever outgrow a gluten intolerance, or are we possibly stuck with this? (Info online seems to be a little contradictory.)

I'm not looking for medical advice--sadly, we have quite a team assembled already!--but I'd love to hear about your experiences. Since he has SO many food intolerances and allergies (including things like corn, which of course is in so many gluten-free products!), losing gluten would be devastating to this very weary mama. I should add that he's been scoped, as they were looking for eosinophilic esophagitis, and his Celiac biopsy was negative--but he was hardly eating any gluten (or food!) at this point anyway. He's otherwise had no bloodwork.

Could I possibly blame these strange outbursts on something else?--not getting enough sleep, a growth spurt, or the heat?? Or might we be pulling gluten...again?

Many many thanks!

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Okay, I can only tell you what other mothers have told me at celiac conferences. I'm very interested in this topic, because I suspect that my nephew has celiac....and so I oftentimes quizzed parents of toddlers and children about symptoms. Parents, as well as conference presenters, described a toddler/child as being out of control, violent, angry, screaming, and sometimes hitting. Also, the kids can be become overly anxious, clingy, and afraid. These symptoms matched my nephew exactly. However, in reading "Primal Body, Primal Mind," I learned that such symptoms can also occur with other food intolerances. It sounds, though, that the reintroduction of gluten may have caused your son's symptoms.

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Thanks for your response! I asked our pediatrician last night if we could do some blood tests, but he said that my son would have to be eating gluten for these to be effective. Is this true? I know that you need to be consuming gluten to do an endoscopy/biopsy. But can't you test for some genetic markers for celiac, for instance, via blood test? Sorry...still learning.

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The reccomendation is usually to stay on gluten until the testing is done, I'm not positive on the genetic marker issue. A lot of times people are put on what they call a gluten challenge, basically eating gluten(and being miserable unfortunately) before being tested to ensure there's enough in the system to give appropriate results. I think it varies by MD but I'd go with what your MD says if you have a good one :) , good luck sounds like you're having quite the time. :(

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My son also has multiple food allergies. We decided to try to reintroduce peanut butter (his peanut allergy is small). We were thrilled that he did not present a rash this time, however, at night he had a night terror the first night we gave him peanut butter. He acted just like you described: crying, flailing, hitting, and inconsolable. The next night he woke up crying and had an accident. So, yes we have experienced something similar. I googled night terrors and food allergies and there seems to be a correlation between the two.

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    • Weird Reaction
      Hi Cristiana, You are quite right, there could be something wrong with the batch. I have often wondered this myself when I've had symptoms. A lot of manufacturers recall products when they find contamination issues, I often wonder though, how many products 'sneak' under the radar and no-one knows for sure; it could be the reason why so many of us wonder what we did to get 'glutened'. 
    • 9 year Old going through testing
      Thank you everyone. I have scheduled a second opinion. He last biopsie came back and he is lactose intolerant.     
    • Gluten ataxia...?
      I was explaining that some people have other trouble that is immune related and caused by eating gluten, but doesn't effect the gut in a noticeable way. According to the paper that I quoted there are some people which have different types of brain problems but don't have inflammation when tested by a biopsy.  The author used the term "non-Celiac gluten sensitivity" to refer to anyone who has any brain trouble that can be traced to gluten but without obvious gut inflammation.  There are a lot of different possible ways gluten can effect the brain some may not be related to the gut.  It could still be an immune system problem.  Normally "non-Celiac gluten sensitivity" refers to just a food intolerance.  Withdrawal symptoms are not normal and could be indicative of an immune system response of some sort, but I don't know for sure.        
    • 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? 
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