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MomBTired

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by MomBTired

  1. MomBTired
    Have you had full allergy tests done? My son doesn't like packaged gluten free bread so it's the only really homemade, pain in the butt thing we make. There are so many ingredients but when it is done, half the loaf disappears magically.
  2. MomBTired
    You get a skin biopsy done?
  3. MomBTired
    Yes, you need to be eating gluten or you could get a negative result when you really are not. I went through this with my son. We didn't know he had celiac disease until a skin disease popped up which was biopsied, then his gastro dr didn't believe it since he had so many normal endoscopies SO he ate a ton of gluten the night before and he was so swollen...
  4. MomBTired
    What food would you miss? I think I have filled most of my teenage celiac son's needs
  5. MomBTired
    I went and left a message asking his endocrinologist if his thyroiditis could be making the test high when it could be completely normal. The only symptom he gets is the DH and we haven't seen it in a while
  6. MomBTired
    My kiddo has DH. You should see a dermatologist about this. A primary doctor will not prescribe Dapsone to you. Lots of bloodwork has to be done and you have to be carefully monitored while using it. My son got a very rare blood disorder from it so he uses just a topical steroid cream now if he needs it. Oral steroids will not affect a skin biopsy for DH...
  7. MomBTired
    I have the extreme case to share. My son's constipation was so bad, he had impactions that put him in the hospital around 2 to 3 times a month for clean outs. He had a colonic manometry which showed the nerves were not functioning in his colon, so the large intestine was removed. That was 7th grade for him, he's almost 20 now and we just found out that the...
  8. MomBTired
    Hey, it's awesome that you are doing this! There is only 10 restaurants I will take my gluten-free teenager to here. We learned the hard way that some restaurants gluten-free menu is just options from the regular menu that are already gluten-free which means, the kitchen isn't even told the person is gluten-free.
  9. MomBTired
    I'm a newbie here but YES, my son was diagnosed 2 years ago with Celiac and after years of gastro problems and severe pain, can't even touch him, he was just diagnosed with autonomic small fiber neuropathy. But with him, if you look at all the systems with all of these issues, he has pretty much all of them except the girly things.
  10. MomBTired
    I checked them all once myself, called all the pharmaceutical companies. The pharmacy is doing it this time for me. They were all gluten free except some were in a facility that also used gluten
  11. MomBTired
    Oh he definitely has celiac, the blood test and biopsy were positive along with the skin biopsy for the dermatitis herpetaformis. Then he was diagnosed with small fiber neuropathy with a positive nerve biopsy which should have been picked up many years ago when he had a colonic manometry come back positive for major nerve damage. He ended up having his large...
  12. MomBTired
    We finally have come to the end of knowing what is wrong with him. It has been almost a 15 year battle, starting in Kindergarten and just finished diagnosing him 2 months from turning 20. There will be a book! I'm really tired HA! But not to tired to find others who might be going through this too and the pediatric specialists are clueless. He's been a teaching...
  13. MomBTired
    Well that's interesting, he does have autoimmune thyroiditis (Hashimoto's disease), along with it. He's a mess actually. 3 autoimmune diseases, after all these years we finally know what happened to his colon years ago which I will share when I don't have post restrictions anymore. He was labeled with Fibromyalgia but an adult neurologist said that's ridiculous...
  14. MomBTired
    He's 19 and extremely careful since the skin disease gets incredibly nasty if he would sneak. He isn't. We have a metal strainer so I never thought about that since I do scrub it with lots of soap. He has been going to a college luncheon at our church. The moms taught themselves about gluten but I just cut that with this test results. He can bring his own...
  15. MomBTired
    Actually, he has his own toaster, his own butter (which I also cook dinner with), his own peanut butter, etc. Dinner is always gluten free except pasta night then his is drained before ours and use separate spoons. We know when he is glutened because he has dermatitis herpetaformis. I believe he was at 95 when we started this battle, now he's at 32. 19 and...
  16. MomBTired

    I'm An Idiot

    MomBTired commented on Steph1's blog entry in Steph1's Blog

    Actually Milky Ways are gluten free. My son is 19, we read all junk food labels HA! Hershey and Mars says to stay away from their holiday shaped treats because it does share equipment with gluten candies
  17. MomBTired
    I'm looking for help. My son was diagnosed with celiac over 2 years ago and we struggle getting his Transglutaminase IgA at normal levels. Is this even possible? Has anyone here been diagnosed with celiac and gotten your levels to normal? Thanks
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