twohokies

We are brand new to the world of celiac disease - positive bloodwork 11 days ago, endoscopy today that showed celiac indicators and a gluten-free lifetime for our 3 year old.

My daughter attends a private, and very expensive, preschool that we have been a family of for almost 5 years since I also have a 7yo and a 5yo. So thankfully there is a well-established relationship :-). I am asking them to adjust their art projects and remove the playdoh, etc. for the times when my daughter is in the art class or when they do things in the regular classroom. Is it reasonable for them to supply their own gluten-free playdoh, pasta, cereal, etc. if they want to do those projects? I do pay a lot for this preschool. Or should I supply it for the whole class, as I expect to do when we are in the public elementary school?

And on a similar subject, does anyone ask for (or receive) a partial refund of the preschool tuition if the school is not providing meals?

Thanks so much!

awwe, thank you so much. It went okay. He took between 6-8 biopsies. There was one area that looked bumpy, but he said that could be normal (like swollen lymph nodes). Matt also had some pretty thick stool (two different ones), which is very funny to me since he always has liquid poo. But the doc said that could be new moving around old. I don't think the stool in there is that old though and he pooped one of those chunks out yesterday. He also said (as well as everyone else there) that the results do take between 1 and 2 weeks. I'm going to be in agony for the next two weeks. Just rush it already.

Matt did have a hard time waking up and they had to give him two doses of albuterol. He was also really mucousy after the procedure. He wouldn't eat for awhile either. He didn't really eat anything until last night, and his procedure was over by 9:40am. He slept on the way home, then took another long nap when we got home. I think he just had a hard time getting the anesthesia out of his system, but he was back to normal by the end of the night.

So now, we wait. Bummer. Doc says we should be able to see food allergies or celiac through these biopsies. Does anyone know, can they tell specific food allergies through this type of procedure?

I can't answer your questions directly but was your doc able to give you any indication of she s/he saw when doing the scope? And/or the direction from blood results? Only reason I ask is b/c we did my 3yo's endoscopy today. Her blood results came back positive on 8/2, our ped scrambled and got us into a GI on 8/3 and procedure today. He took pics and showed us the irritation at the entrance of the small intestine and also the scalloping along the sides........both non-diagnosable indicators of celiac. He will be more surprised if the biopsy results come back negative due to the bloodwork and what he saw. But, we should get the biopsy results next Wed (5 days post-scope) and then meet with him the following week due to his vacation (10 days post-scope). What I am most anxious about is getting in to see the nutritionist and setting up our game plan, but that won't happen until mid-September most likely .

FWIW, my husband and I were in tears as we watched our baby put to sleep. My husband told me that he had to hold himself back from knocking out the anethesiologist for forcing the mask on our daughter to put her to sleep; but he knew it was for her own good. Thankfully we only had to wait 15mins but it was still hard waiting and then watching her while the meds wore off and she was waking up (she's a crank in the mornings as it is!).

I hope you can get some answers soon!

We are new to celiac and going gluten-free. My 3yo just tested positive last week in the bloodwork and had the endoscopy today; GI saw a lot of celiac markers in her instestine (irritation, scalloping). We have been removing a lot of gluten in the past 10+ days but aren't 100% there since school will take a little time to sort through all the art products, etc. My question.........

Once she is 100% gluten-free and her intestine is healed, will she always feel pain if she's glutened? Is she just used to the pain now or will the body be over-reactive to it in the future when it's not an almost-daily occurence?

Thanks!!!

We are VERY new to celiac, just getting the positive test results last week and biopsy done today. GI doc will be surprised if biopsy comes back negative based on what he saw. So I don't have too too much to add, but:

The reason we tested my daughter at her 3yo well visit was due to her bowel issues that they are always soft and every 6-8 weeks turn into liquid for no reason. She also complained of stomach pain throughout the day and especially during the 1 of 5 daily bowel movements; she's been potty trained for almost a year. Now that I know she has celiac, some things are explained: her horrible diaper rashes even when pt'd b/c of the acid on her bum, distended belly and small growth.

Since August 2nd, we've put her largely on a gluten-free diet and have seen so many improvements almost immediately. Tummy pain is gone and BM's are more formed and only 1xday, if that. Even though she's a newly 3yo, she notices the difference to the gluten-free diet.

I would definitely suggest doing food allergy panels to cross things off your list. I would also consider going gluten-free/CF to test for intolerences that won't show up in the allergy panels. My 5yo has an intolerence to dairy (not sure if it's cassein or lactose), but didn't test positive for that allergy. We took her off all dairy a year ago and it's amazing the improvements in her bowels and stomach pains. She had very similar reactions & responses to dairy as my younger daughter has to gluten.

Good luck! I know it's difficult to hang in there, but get the bloodwork done and go from there. In the meantime, try cutting out your typical allergen foods.