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Vanquish Rookie
Vanquish
Posted

Hello all, just figured i'd give you my story and see how closely this resembles your own celiac diagnosis. It all started 6 months ago when i had started to get a rash on my elbows, lower back, and knees. The rash did not go away but was not that bad in the beginning. Until one day about 5 months into having the rash it started to blister and itch terribly bad. Went to the dermo, had 2 biopsies done, first one was negative, second one was positive for DH. My derma wanted me to have another blood test too, the first one being negative and the second one being positive again...so i was referred to my family doc who took another blood test and found i had positive anti endomyseal and anti giladin antibodies. Which i guess is the gold standard for celiac disease. I am unaware if there is any error in those tests however. I went on the gluten free diet in the meantime and my rash cleared up extremely fast probably within 2 weeks. Which is really starting to point me to celiac disease. However i hit some bumps along the road and...i didn't have any reaction. So i was befuddled, can you have celiac and DH but only react to large amounts of gluten? I am awaiting an endoscopy on the 2nd of june which should confirm what i think i already know but is it possible to have all these symptoms and have tropical sprue? I can almost remember my symptoms before my Dh started, and it was major stomach pains maybe once at night for 2 to 3 months prior to starting to have break outs. Oh, and i am the first in both sides of my family to be diagnosed with celiac if i indeed have it (which i am sure i do at this point....unfortunately..). I guess im just confused as to why i can tolerate gluten at some times and not others without the nasty repercussions that other people face. Unless as i go along with the gluten free diet my reaction to gluten ingestion only gets worse. Thats my story up to this point. Just trying to go with the flow of things.

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IMWalt Contributor
IMWalt
Posted
So i was befuddled, can you have celiac and DH but only react to large amounts of gluten? I am awaiting an endoscopy on the 2nd of june which should confirm what i think i already know but is it possible to have all these symptoms and have tropical sprue? I can almost remember my symptoms before my Dh started, and it was major stomach pains maybe once at night for 2 to 3 months prior to starting to have break outs. Oh, and i am the first in both sides of my family to be diagnosed with celiac if i indeed have it (which i am sure i do at this point....unfortunately..). I guess im just confused as to why i can tolerate gluten at some times and not others without the nasty repercussions that other people face.

I also wonder the same things. I have recently started the journey of finding out what causes my symptoms, and why sometimes I can eat bread with no reaction and other times I get a bad stomache ache, cramps, gas, etc. That's a mystery to me. What isn't a mystery is how much better I felt when I ate gluten-free for a month. I am 50 years old, and I did not realize I could feel that good. I always thought everybody had the cramps and gas that I did. I thought I was normal. When I asked my doc why I always had those symptoms, all I got was "Hmmmmm". Finally after a 2-year journey to get my daughter diagnosed with celiac disease, I decided to try a gluten-free diet, and it was like somebody flipped a switch and I was normal.

Good luck!

Walt

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      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

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    • knitty kitty
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    • lizzie42
      Son's legs shaking

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      Son's legs shaking

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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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