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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? - 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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Bracing For The Endoscopy
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Well, my 16 month old daughter is having her scope on Friday morning. While waiting to see the GI, we had more allergy testing done and found in addition to the off the charts milk allergy, the whole egg and egg whites are off the charts as well. The ped GI noted that her gliadin was low but the levels that were high (I wasn't scribbling fast enough) were high in 25% of the population, so he wasn't convinced of celiac disease based on that and even after having seen my daughter in person. We have our scope in a little more than 24 hours. I just found out that they don't allow parents to accompany, so I'm a little bit sad about that. Maybe it's for the best, though. I forgot to ask about the amnesiac. My daughter has major anxiety just being in the same room as other people, so I know it's going to be a long day for her.

Question - do they have to look for celiac disease specifically or will they know it when they see it? Anyone know if the same goes for things like eos/ee?

I don't know whether or not to hope they find something. It would sure be nice to figure out what's been causing the failure to thrive as well as her irritability, etc.

For those of you that have gone down this road already, any tips, advice, questions or subjections I should bring up with the GI?

Thanks much!

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If your daughters GI doc is checking for celiac disease he will do biopsies of the small intestine during the scope. A microscopic examination of the biopsies are necessary for the diagnosis of celiac disease (If the villi, which line the small intestine, appear flattened or damaged then they will most likely diagnose celiac disease). The villi may appear damaged by visual examination with the scope camera but it isn't enough to make a diagnosis. Right after my scope my GI doc said something like "it looks suspicious". But I was also partially sedated at the time.... :unsure:

For questions to ask the GI doc.....

-I'd ask if he is doing multiple biopsies of the small intestine (This is important since some parts of the intestine may appear fine while others are damaged).

- If your daughter has a choice (like I did) to be sedated or not, choose sedation for her! Trust me on this one. I had partial sedation for mine. The scope wasn't painful but extremely uncomfortable, and I gagged through most of the procedure. I'm assuming they would give complete sedation to a small child, but you never know.

- I would ask when to expect results and if he could go over them with you.

- I would also ask when you could start a gluten free diet with your daughter (If you want to try it). I asked and I started mine the day of the scope!

I wish your daughter luck on the scope! She'll do fine :)

-Carrie

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Hi! My daughter had a colonoscopy when she was 26 months old. She was extremely anxious about being in the hospital with all the medical staff. They gave her some versed orally, which completely calmed her. (Actually, they gave it to me to give to her so she wouldn't be afraid.) She just watched as they inserted the iv. NO crying. NO anxiety. My husband and I stayed with her while she was put under anesthesia. That was definitely the hardest part. Then we had to leave. The procedure was very quick, though she didn't have an upper gi done at the same time. She had a rough time coming out of the anesthesia, crying for about an hour straight. But, after that, she was back to her old self. I'm sure it's a lot harder on the parents than the child, especially if they can give her something to calm her a bit. The versed worked great!

Good luck. It will be over before you know it!

Sue

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My daughter had ear tube surgery at a similar age. Anything that involves putting a small child under is scary. For us, the surgery was very scary for the parents but not so bad for her. They let me hold her until she passed out, which helped her but made me feel terrible.

My suggestion would be to ask if you can be present immediately after the procedure for the recovery. If she is very upset by strangers this may make waking up easier. Also see if you can bring a favorite baby doll or toy to comfort her while being put under and during recovery. It seemed to help us.

It may make you feel better to know that however she reacts to the procedure, due to her age she will very likely remember NOTHING from the day.

Good luck!

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Wishing you and your little one good luck.My 15month old son's Endo and Sigmod is on Tues the 7th.I know they are taking 6 pieces for the biopsy and he will be sedated.The GI doc will tell us if he saw anything after the procedure as for the Biopsy results they will come back for us in less then 1wk.Take Care!

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Thanks for all the advice and support. In my logical mind I know it's a pretty quick, common procedure that carries few risks, but as a mom...well, what can I say...I'm a softy in that area! I know she'll be fine.

For the record, we are going to be doing a biopsy (will ask how many samples). I was told by the nurse that the sedation will be partial but deep. Not my first desire, but considering that I don't believe my daughter has been put under before (she was in the NICU at birth) it may be best to forgo general anesthesia unless it's totally necessary.

Wish us luck tomorrow morning. I'll post an update when things settle back down.

Thanks again for everything!

-Jen

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Wishing you and your little one good luck.My 15month old son's Endo and Sigmod is on Tues the 7th.I know they are taking 6 pieces for the biopsy and he will be sedated.The GI doc will tell us if he saw anything after the procedure as for the Biopsy results they will come back for us in less then 1wk.Take Care!

Just wanted to add that I wish you luck as well next week. I hope it goes well and they find the answers you are looking for.

-Jen

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