Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness

Finally figured out what is wrong with my daughter

Feb 18, 2018 3:54 PM

After finally getting into to see a pediatric GI doctor after what seemed like an eternity! We actually found out that she has celiac's. I've got a big learning curve ahead of me! I am glad to finally have a name for the problem she is having but, I wish it was me and not her, what I'm reading I don't like, she has a chance of getting other autoimmune diseases and it specifically named the one I have. I don't know if that will double her chances of getting it or not, will have to ask her doctor when she goes back in 6 months. But thier is the update. Be blessed everyone!

Feb 18, 2018 4:08 PM

Wow! So glad you found out what was wrong.

Feb 18, 2018 4:31 PM

It is a very tough learning curve. Going gluten free, even though for me it was only a year, was the hardest thing I've done medically. Most gluten free food tastes horrible and is very expensive - half a loaf of gluten free bread is $7.50 CAD. Switching from a normal diet to a gluten free, especially for children, can be excruciatingly upsetting and a very isolating experience. Depending on the age of your daughter, it could cause some depression. I strongly advise that you try to be patient and understanding during this difficult time. Below, I have shared my story of my celiac diagnosis and the year I went gluten free.

I had a weak positive blood work and biopsy for celiac disease in 2012 and was told not to go gluten free. In 2014 I had repeat blood work and biopsy. This time the blood work was negative and the biopsy was positive. The pediatric GI doctor said, "I have never seen these results before, but the textbook would say to go gluten free." I was GF for a year and during the first 6 months, I literally started to cry in stores or restaurants because I couldn't have the food I used to, and I became very isolated in school because I couldn't eat anything during class parties. Throughout that year my symptoms and pain got worse, so I went back to a normal diet which turned out to be the right decision on my part.

In 2016 a pediatrician relooked at both sets of blood work and biopsies. She found that the pathologist who looked at the second biopsy made the connection between me being lactose intolerant for life and the false positive biopsies for celiac disease. Apparently, it is known that untreated lactose intolerance can cause similar intestinal damage as celiac disease. I learned that I never was Celiac and never should have been told to go gluten free.

Feb 20, 2018 12:03 PM

My daughter has been sick for what seems like a year now and would miss school 2 weeks at a time because she couldn't hold down her food , at the time(the whole time actually) we had been using tide pods to do our laundry.. my daughter we had cut gluten out of her diet because my friend and I were talking about my daughter and her getting sick and the doctors were even at a loss at that point.. I had been doing a food journal on what she ate and held and what she ate and couldn't and that's when my friend and I saw the pattern and that's when we cut her off gluten foods, it helped some but she was still getting sick and her primary care physician decided that he would refer us to a pediatric GI doctor... We before going to see her I switched the laundry detergent because of the expenses and Drs bills, well after switching the laundry detergent she immediately saw improvement, come to find out tide pods had gluten in them... When we saw the the the pediatric GI doctor we told her about all the tests that were already run and what she was experiencing and we showed her the food journal and I told her the big difference Cam about a week before the appointment and that was the detergent switching.she said that she wants my daughter back in 6 months and that she is 💯% positive she has Celiac Disease because I took most all of the cross contamination out of the equation and she got better almost immediately (a a couple days after) and 2 I have an autoimmune disease that people with Celiac Disease have a greater chance of getting that is genetic. She said to treat it as Celiac Disease for now and she will do official testing in 6 months once my daughter's body has time to recover from being I'll for so long. And it's working out very well, my daughter had not missed a day of school and has not gotten sick since. We have her own separate set of dishes as well since our dishwasher pods also contain gluten. But seeing a healthy 15 year old is all I need. Yes you are right about the bread and the cost of the gluten free food and the taste. We try to cook chili.often because it's gluten free and my daughter loves it. I am looking at buying a bread machine so I can make my own bread for her. I can make flat biscuits lol!! 😏 Trying anyway thanks for sharing your story, glad it turned out that you didn't have it!

Feb 20, 2018 11:28 PM

I have found lots of GF foods that help me miss the cookies, etc. Check out TJ Maxx and there are some in grocery stores that taste as good as the others. Yes they run more, but portion control. And some are more filling so I tend to want less. I have asked friends that eat GF for recipes and even for them to cook samples for me. Most that are GF will be glad to share. It was the crunch that I missed the most from dropping gluten.

Feb 22, 2018 12:19 AM

As AmbrielleLyn stated earlier, my daughter's real challenge is the other kid's making fun of her making her feel lonely and my daughter actually had a full blown anxiety attack at school yesterday, it was so bad she couldn't stop crying and the only that got her to stop was the band teacher taking her by the shoulders and forcing her to play her clarinet for 15 minutes... By doing that it was forcing her to concentrate on her breathing she just didn't realize it, but it stopped the anxiety attack altogether and she was okay when she got home but exhausted. She has 2 good friends at school who are thier for her, as long as she has friends in her corner that is all that matters, and she has a wonderful boyfriend who cares alot about her as well.

I have an app on my phone that I can get many different gf and df recipes from and my long time friend from middle school who's daughter has a gluten intolerance calls me and text's me gf and df recipes alot of the time, we became something of a lifetime to each other on this. The thing I have to worry about that she doesn't is cross contamination and looking to make sure it's not in any product my daughter will be using and or touching.

Feb 22, 2018 3:40 AM

Its so liberating to get answers. I don't know why being able to make your monster makes it easier to fight.

Feb 22, 2018 6:36 AM

Yeah, I understand what you mean when I was sick and for and know what was going on and when I finally got name's to what I have it did make it easier, I think it's because we knew what we were up against instead of the unknown.

Ready to start relieving your pain?

Join Community