Possible celiac

[suzyq63]

Alison has been having gastro issues for a couple of years but has gotten worse over the last couple of months. Initially the gastro thought it was irritable bowel syndrome. At her follow-up yesterday, he said that her antigliadin antibodies were positive. There were two other blood tests which were negative, so we're still hoping that maybe she doesn't have it, or at least not yet. He ordered a celiac gene test and the blood was shipped out to San Diego last night. An endoscopy is scheduled for June 26.

Anything I need to know? I have a friend with celiac so that if Alison does have it, at least I'll have my own personal consultant. But I don't want a diagnosis of celiac! Alison has enough diagnoses. She'll probably adjust to it better than I will.

Thanks for listening.

[zell828]

So sorry. I hope she doesn't have it too. :(

[Pavlos]

I suggest you contact Kaylee's Mommy - her daughter was recently diagnosed with celiac, and she can probably share a lot of info with you!

[NatesMom]

This is my first post....

Hope she doesn't have celiac but you can survive it!!! My son was diagnosed with Type 1 on 9/28/07. Blood test for celiac was done in hospital...didn't even know. At first endo appt. after dx. was told markers were high......actually very high. Endoscopy done 11/6/07.....positive....no symptoms. Crazy time!!! Have slowly learned the ropes. If she is positive, I can give you great food recommendations. How old is your daughter??? My son is 9 and the hardest meal is lunch at school. Keep positive and try not to get overwhelmed if she comes back as positive.....although I lost it. Looking back on it .....waisted energy. Talk to other celiac parents to realize it is totally manageable!!!


Good Luck!

[Kaylee's Mommy]

Kaylee is having her endoscopy next wednesday, the 28th, just to confirm.. she's had symptoms but its always been something that I could explain as something else.. back in march she had her annual blood work which came back as a week positive.. we went to the GI dr we checked Kaylee out, asked questions and then suggested we redo the blood work, along with some extras.. her blood work came back as very positive, and she does have the antibodies.. I asked the nurse if this means she definitely does have celiac, she said yes, but they'd go ahead with the endoscopy because its a life long disease so they want to confirm.

I was, and still am overwhelmed with celiac information.. I knew the basics pretty quickly, but unlike diabetes, there are hidden 'glutens' in products.. and those things you have to be able to identify.. also, not all gluten-free items are good.. some are pretty yucky tasking.. I found this site http://www.csaceliacs.org/gluten_grains.php that gives a great list of things that are OK and to stay away from, it also explains what things are..

Kaylee's blood work went out to CA too.. her GI dr said that is a very very accurate lab.. I hope its not celiac as well.. its something that I was hoping we could avoid too!

[NatesMom]

Hope she doesn't come back as positive but sounds like she probably will. A great book is "Wheat Free Worry Free" by Danna Korn. She has a celiac son....although not Type 1 so not all the information is helpful.....but a great read...great explanations about celiac and has an extensive food list of gf foods/additives and non-gf. For specific foods and brands..."Cecelia's Gluten-Free Grocery Shopping Guide"...I think we got it from Amazon or from the Celiac.org website. It lists foods by category and by brand that are GF.....great to bring to the grocery store. i.e. look under "chips" to see what brands of chips are gluten free. I found it very helpful!!!

:)

[suzyq63]

Thanks everybody! I spoke with my friend who has celiac and she told me that there is a small specialty store about a half hour's drive that carries a lot of gluten-free products. By the time she was diagnosed, she had a lot of damage to her villi; and the typical blood tests were negative for her.

We'll do what we have to do and I'm sure we'll be fine. I don't know how Alison will do with it though. She won't be able to eat what everyone else eats. She already has her own small fridge and cupboard for her "freebie" and almost-freebie snacks; I guess we'll be filling them with gluten-free foods instead.

Alison is 11 but developmentally she's probably between 5 and 6 with pretty severe language issues which makes it difficult to explain things to her.

On another wonderful note, she woke up this morning with a blood glucose of 201. We haven't seen a fasting number like that since diagnosis; so I'm not sure what's going on. I guess we'll see what today brings.

[OSUMom]

Thinking positive thoughts for your daughter!!!! :cwds::cwds::cwds::cwds: