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MitziG

A Thank You, And Some Good News!

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I haven't posted in awhile- mainly because the last several months have been spent in hospitals and running to myriad dr appts. My two kids and I were all diagnosed with Celiac last spring-though my 7 yr old son was the one having gastro problems at the time. My daughter and I had many other issues that turned out to be celiac related. Anyway, after 6 months of a strict gluten free diet, my son was not really much better. He complained of tummy aches daily, though they weren't as severe as on gluten. He also was struggling with ADHD symptoms, panic disorder and was severely depressed. We took him to Mayo Clinic and finally fopund a gastro that actually KNEW something about Celiac. She was the first to even do a blood test (he was diagnosed via biopsy only after I insisted they go inside and see what the heck was wrong with his stomach!) She also tested him for vitamin and mineral deficiencies, something his previous gastro had refused to do, feeling it was "unnecessary." Thankfully, his vit and mineral levels were ok, with the exception of low ferritin, which we already knew about. His TTG was high though, meaning he was still getting gluten somewhere. Couldnt believe it! We have a completely gluten free house- we had eliminated every imaginable source of gluten- cleaning products, shampoos, toothpaste, lotions- I replaced all my kitchen items, cleaned everything, and even threw out suspect toys that couldnt be cleaned. I could not imagine where he was getting gluten, and was very discouraged. That night, I visited this forum, and saw a brief mention of wax on fruit and vegetables possibly containing gluten. I was floored. The kid is practically vegetarian, by choice. He consumes apples in particular, practically in bulk. And of course they always had wax on them. SO- switched to organic, wax-free produce, and almost immediately, we saw BIG improvement! Now, 6 weeks later, not only are the belly-aches GONE, but his lactose intolerance has disappeared (it was so bad he had to take Lactaid if he even had something with a tiny bit of butter on it.) His attitude and behavior have done a 180- he is happier, more patient, and is not having a meltdown every morning before school as he was! He hasn't told me he wants to die in several weeks- (something that was happening several times a day!) I have spent months dragging him from dr to dr, taking him to therapists and counselors- desperately trying everything to make my child be himself again. It all came down to apples! And I doubt I would have known that if not for this forum. So thank you, to all who contribute the little bits of info that may seem insignificant at the time. No telling whose life may change because of one person's observation!

Unfortunately, my poor 12 yr old daughter is sicker now than she ever was before going gluten free. She is now extremely sensitive to the tiniest bit of cross contamination and ends up vomiting for days. She developed shingles in her ear drum in July, and lost part of her hearing and has to wear hearing aids now. She has ZERO immunity, and is sick almost every day. She too has an upcoming appt at Mayo and I am hoping that may shed some light on what is happening. BUT, just the fact that at least ONE child is improving, suddenly, and DRASTICALLY, has given me renewed hope! I am becoming a bit of a gluten-free zealot now- wish the stuff could just be eliminated before one more person ends up going down the awful path that Celiac Disease sends one down!

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There is a lot of information here. Keep a food journal for the kids. There may be some other food intolerances along the way. You may find the gut has healed and other intolerances aren't an issue anymore too.

Female hormones tend to excerbate auto-immune illnesses. It took 2 years on the gluten free diet for me to start feeling healthy again.

My 8 year-old was diagnosed "probable" Celiac when she was 17 months old.

Diagnosed with Eosinophilic Esophagitus when she was 6.

She just had Cellulitis this past spring. (When the immune system is just overloaded, you have to be on the lookout for everything and then some.)

Glad you are here at the forum!

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Wow. Your family has really been through it. I'm glad your son has improved and hope your daughter follows quickly.

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