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Questions....

Gen

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Gen Rookie
Gen
Posted

I wasn't going to post untill I got a definitive answer, but after reading, I don't know if I trust the doctors to go in the right direction.

FOR atleast 12 years I have had rashes and severe itiching on my legs. It would come and go. Always on both legs in exact same places. I would sometimes scratch untill I bled at night. It didn't matter what I did. Lotions, exfoliations, cortizones ect...It would itch till it hurt and scratching didn't help. Once again I brought it up to my GP when I was in for something else. In an offhanded way he mentioned cutting out wheat. That was 5 years ago.

I never really got around to it. Till I went on an extreme diet 2 or so years ago for about 6 months. Wasn't intentional, but I really only got lean plain protien and vegi's with 3 melba toasts or 2 pieces a day of light bread. Lost weight great. After I got off of it I wasn't really eating much carbs of any sort. My itching started back and husband and I noticed my itching was gone while on the diet.

The last few months with the holidays and vacation have been a gluttonous time for wheat for me and sure enough I got the rash so bad that I decided to go completely wheat free. It's been a learning experience. Gluten or wheat is everywhere. It's been 3 weeks. I have had one on purpose exposure and 2 on accidents ( soy sauce and immitation crab?!) The day after the on purpose I had the rash for about 24- 48 hours. I also quit smoking two weeks ago. I actually feel better than I have in a long time even though I was quitting. The first two days off wheat, I was ehausted and dazed, but that passed.

I do have some external contact with wheat reactions too. My head was itchy and I scratched it and it became inflamed . I also react to adheasives. The number of oral drugs I can take are decreasing fast.

Don't shoot me for saying this but I would prefer it to be wheat based problem than the other thing based on family history it could have been. Incidently there are there many autoimune issues question that always come up when dealing with my moms liver dr and my son's endocrinoligist.

I am going in for my physical and to be refered to a hemotoligist for a blood work result unrelated to this problem. What or who should I ask for referral too? Allergist or Gastro? I have no gastro symtoms to my knowledge. I just had all the other normal blood work and other than cholesterol and an elavated WBC every thing is right where it should be.

I would appreciate any suggestions comments and directions anyone can give me.

Thanks in advance!

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ravenwoodglass Mentor
ravenwoodglass
Posted

Ask for a complete celiac panel, your regular GP can order it for you. Without gastro symptoms you should also call your derm and when the rash is active ask him to biopsy looking for DH. If you have DH you have celiac and no other testing would be needed. Just make sure the derm does the biopsy correctly, he needs to biopsy the area adjacent to the lesions to find the antibodies. There are other skin problems that are associated with gluten but if this is DH it is definately celiac.

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      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Son's legs shaking

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    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
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      Son's legs shaking

      By knitty kitty · Posted

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    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      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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