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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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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Seton

21 Months Old And Confused About Next Steps

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Hi everyone, first post here and I will sincerely try to be brief :)

My son is 21 months, still breastfeeding, on a gluten, dairy and oat free diet. I went gluten and dairy free when he was 2 months old as he was having intestinal issues. We have been gluten "free" ever since, but I have never concerned myself with cross contamination. He is on the small side and grows very slowly, but he IS growing. The following is a summary of unusual events in his life:

Reflux from 3wks of age until elimination of dairy and gluten. Returns when mistakes occur and he or I consume milk products.

Torticollis diagnosed at 5 months. Physical therapy to correct

Two seizure like episodes at 6 months. Neurologist and ped determine it is Sandifers syndrome from the reflux (episodes occurred shortly after I consumed dairy)

Heart murmur detected at 12 months.

Anemia suspected at 12 months but can't confirm due to lab error.

Oat and pear allergy diagnosed at 15 months.

Severe tooth decay within weeks of first tooth eruption.

Severe Anemia confirmed at 19 months and cardiologist believes heart murmur is caused by anemia.

I am looking for advice about how to proceed. I strongly suspect celiacs but wouldn't we have been able to avoid all of these effects since we have been gluten-free almost since birth? Or is it truly possible the trace contamination is enough to trigger this damage to his gut in such a short time? At thanksgiving he was given a corn muffin by a well intentioned relative and he had absolutely no reaction to it. That was the first time since he was 7 months that he knowingly had gluten. When he had barley at 7 months he screamed in agony for an hour, so I was shocked that he did not react.

I'm just questioning everything! My gut says celiac, but does that align with the picture I have outlined? His doctor is willing to test for celiacs (mainly because i am asking) but I'm not sure I should add it to his diet.

Thanks for any advice you can give!!

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Hi there,

Unfortunately, I don't have much advice for you, but I did want to have some sort of reply for you.

In my experience, the "mommy instinct" is usually on to something. Whether or not I think your LO has celiac, I can't answer, however.

I do have a friend (now in her 30's) who has severe difficulty with dairy proteins (gets rashes, acne, congestion, nausea, vomiting, D, migraines, etc, the list goes on and on). She has to avoid even trace amounts of dairy (even if something is processed in a facility that also processes milk products). She also has some minor discomfort if she consumes gluten (a bit of blaoting, maybe some D) but does not have celiac. She can get away with picking croutons off a salad or having small amounts of soy sauce, for example, whereas I cannot.

I guess what I'm getting at is that yes, trace amounts of something can cause problems for some people, but the foods that affect them can be very different. So for your son, he may not do well with gluten, but it might not be something that needs to be totally eliminated. It might be dairy. Or something else. Or maybe it is gluten.

Given his history of severe reactions to dairy, I'd personally be looking to eliminate all possible sources of dairy cross contamination first. Was there dairy in the corn muffin? Did someone put butter in the muffin tin so the muffins wouldn't stick?

If you suspect dairy may be the bigger culprit, a bit of a gluten challenge may not be a bad idea. But I wouldn't totally rely on blood tests or biopsies to rule out celiac in your little guy, since testing is so unreliable in young children, especially if they have been consuming gluten for only a short period.

I'm sorry I couldn't be of more help.

Good luck!

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You have to be working with a pediatric gastroenterologist. With the "reflux", close symptoms to Celiac, and food (protein) "triggers" it does sound like Eosinophilic Esophagitus. (There is a connection between the 2 and my daughter has both.)

Has a hernia been completely ruled out?

My kids also had missing tooth enamel, which makes them cavity prone.

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Thank you for your responses!

Ollie's Mom, we are super careful about milk products because our older daughter also has a dairy allergy. The corn muffin was prepared by a severely dairy allergic family member so I am confident it did not have any dairy. You raise a good point though and maybe I am overlooking some trace amounts. Thank you!

Mommida, thank you for your suggestions. They really strike a chord with me because we have not ruled out either. My daughter had similar symptoms to my son when she was young and we did have a barium X-ray and upper endoscopy which did not show a hernia or the EE. The doc and I jumped to food allergies since that was my daughters history and we did not rule out the other options. So maybe it's worth pursuing now. The problem I have with that is that he is no longer unhappy or in pain...he is a happy happy kid ever since we eliminated his food triggers. So I think that is the crux of the issue for me...he is happy and not affected in personality, but still seems to be having lingering health effects that make me question things.

Thank you both! I hope to find answers soon.

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    • The reason I think it was the shampoo? Process of elimination. Our house is almost entirely gluten free (except for this shampoo which slipped through the cracks until I read the ingredient label). My husband has bread that he eats at lunch, but he practices something that resembles aseptic technique from the lab when he's making his sandwiches. He's been doing this for years now and I've never been glutened from within my home. The previous week I hadn't eaten out, I cooked all my food, I don't eat processed food and I never eat something from a shared facility.  Usually if I get glutened it's a single dose sort of thing and it follows a very predictable course, to the point where I can estimate when I got glutened within 24 hours of when it happened. However, this time, I was feeling achy and arthritic and moody for about a week before it got bad enough for me to recognize it as the result of gluten exposure, at which point we went searching and found the shampoo (and conditioner, which does leave more of a residue than shampoo), which he immediately stopped using. Within three days I was feeling back to normal (which is the usual course for me).  Sure, it could have been something else, but I know how sensitive I am, and, as silly as it sounds, it was the only thing that made sense. The other thing you said: You're correct, mine was not a rock solid celiac diagnosis, but I have no doubt that gluten is the problem. I was SICK. I went through two different gluten challenges in an effort to get a more straightforward diagnosis during which I was a barely functioning human being. Consuming gluten may not have given me blunted villi or elevated antibodies, but it did inflame my gut, and actually started to damage my liver. If you look at my diagnosis thread, I had elevated liver enzymes, which have been correlated with celiac disease in the past. There was no alternative explanation for the liver enzymes, he checked EVERYTHING.  I too am a scientist and I have spent a lot of time with the literature trying to make sense of my condition.  https://www.ncbi.nlm.nih.gov/pubmed/26150087 I also have no doubt that gluten was damaging my intestines in some way, as any prolonged gluten exposure in the past has inevitably been followed by a severe FODMAP intolerance that goes away once I've eliminated the gluten and given myself a month or so to heal.  I also had a very fast diagnosis following the onset of symptoms (~1 year) so it's possible that the disease never had a chance to manifest as full celiac. I wasn't willing to eat gluten long enough to find out. As a result of my diagnosis, hazy as it was, I am *meticulously* gluten free. It is not a fad for me. I don't occasionally cheat. It is my life, for better or worse. All of that being said, I'm not sure what my diagnosis has to do with your question. You say you're not trying to be rude, but when you bring up my diagnosis in a thread that has nothing to do with diagnostics, it seems like you're trying to undermine the validity of my disease or the validity of my input in this forum. If I'm being hypersensitive, I apologize, but that's how you came across on my end. I'll admit that the fact that my diagnosis wasn't more straight forward does make me a bit defensive, but I promise that even if I didn't have a solid diagnosis, I interact with the world as though I did, and I'm not out there giving people the wrong idea about celiac disease by not taking it seriously. If there was a connection between your question and my diagnostics that I missed I would appreciate you giving me the chance to better understand what you were asking. 
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