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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.

Ped Gi Appt. In Oct.
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7 posts in this topic

So,

My son has been having more frequent stomach aches and D. Enough that he openly talks to me about it. We had a convo last night and it sounds like he's tired of it and is willing to do something about it.

So.....I am picking up the lab order for his annual antibody testing next week at my appointment...and we have an appointment at UA Pediatric Gastroenterology in Oct.

Sigh.

Now I have to keep him on gluten through his fall break (3 weeks) at home, since I've been relying on school lunch to gluten him the past year.

I so didn't want it to come to this, but here we are.

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Ok.

Went to the grocery store for gluten. Figured he may as well eat some of the stuff I never bring home because it may be his only opportunity. Came home with Twinkies, Goldfish, pretzels and Pop Tarts.

He is in heaven, except he has very bad D.

Discovered that he snuck the remaining two small bottles of Weinhard's Orange Cream Soda that he wasn't supposed to get into.

So I have a kid with D chugging sugary soda, and stuffing Goldfish crackers and Pop Tarts in his mouth and wondering why he can't stop cramping and pooping.

I predict a stiff learning curve.

I threatened to throw it all out and shove vital wheat gluten pills down his throat.

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:) You are a good Mom :)

Yes, it's hard to gluten load...and so important! If you know that you are willing to do an endoscopy, try to set that up now too so that not too much time passes between the initial GI visit and endoscopy (so you don't have to continue to keep him on gluten even longer).

Also, you might ask to have his digestive enzymes sampled from his villi during an endoscopy, if you go that route. Not many doctors know of that test, but Dr. Pietzak at Children's Hospital in Los Angeles does (and your doctor could contact her). Interestingly, one of our girls had effectively NO digestive enzymes for sugars, lactose, fats...but craved all those things. I'm sure if I had had orange cream soda anywhere, she would have consumed it...

Yes, I let my kids have a Ding Dong before their endoscopies--made my mom happy that they'd get a chance to taste "American culture" ha ha.

Thinking of you!

P.S. I made my girls "celebratory" gift baskets for going gluten free--packed with all sorts of yummy gluten-free treats (cookies, crackers, pancake mixes, gluten-free lipstick, etc.)

Maybe your son would like a box of treats too...when his gluten-free day comes!

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Thanks for telling me about the digestive enzyme testing.

I don't know if they'll schedule an endoscopy prior to the visit. I am going in with new labs, that's a plus. Of course, I have no idea what they'll say... Maybe after I get the labs I'll call and see if they'll set it up.

As it turns out we both had a stomach virus- which, interestingly enough, seemed like a magnification of his already present symptoms. No fever, etc., but until it hit me neither one of us suspected. So...the urgency has subsided but he still had bouts of nausea, cramping, d (mostly mild c) and sometimes vomiting. It's a few months early for the blood retesting (10 months) but close enough.

So, we will continue to gluten him up. He's thrilled.

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Well, just left peds office. He wants to do an abdominal X-ray, a new celiac panel from a different lab (to see if anything differs), and schedule on endoscopy.

He wants to see what's going on...he thinks its functional constipation but won't make a dx until we go through all of it. He doesn't think it CAN'T be celiac, doesn't think we're crazy, and is actually doing something.

All good news so far.

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So, X-ray shows kid is very constipated.

Well, at least I can honestly (and without sarcasm), tell him he's full of crap.

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:) sounds to me like you and your doctor are good matches and are doing a great job taking care of your son!

Thinking of you!

Keep us posted!

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    • Hi Michael and welcome The celiac diagnosis process can be a little confusing. Some time ago I tried to put together some info and links that may be of help:    The key point would be to stay on gluten until you and your doctors are satisfied that celiac has been excluded. In your case that may include another test with a more complete panel as CyclingLady says above. If you go gluten free independently during this time you risk invalidating the results and adding to uncertainty. The second suggestion would be that should you succeed in eliminating celiac as a diagnosis then you have nothing to lose from trying the gluten free diet. I tested negative on blood and endoscopy, but removing gluten resolved or greatly improved a whole load of symptoms including anxiety, depression and that feeling of not being right that you outline above.  I say greatly improved because I can still suffer from anxiety or depression, as anyone can, but if I do, they're nowhere near as severe as they were when I was consuming gluten.  In the meantime, one thing you could do is to keep a food journal to see if you can track any relation between what you eat and how you feel. It's good practice for if you later try the gluten free diet and you never know what you may learn.  This is a good site full of friendly help and advice. I hope you get the help you need  
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