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Gluten Neuropathy
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Having been tested I am not celiac, but I have a severe intolerance to wheat and a moderate reaction to gluten/glaiden

So I am having so much trouble finding ANYONE who can relate.

When I have wheat/gluten I get the oddest symptoms 24-36 hours later.

Please tell me someone can relate!!!! Please!

  • dizzy!!!!
  • left leg just gets numbish - I present as normal but it's so aggravating
  • back ache/stiff joints
  • fatigue/no get up and go

Side vent: I went to this other natural dr. who thought it was all bogus and gave me these supplment with other sensitivites I tested positive, INCLUDING a B complex with wheat germ. Needless to say, I don't take those anymore, but it just bugs me how people just stare at me like I'm making these symptom up. Some restaraunts are so cold hearted. I was left with nothing to eat but iceberg lettuce, broccoli & onions the other day. I was nearly in tears because I didn't bring any food w/me.

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Having been tested I am not celiac, but I have a severe intolerance to wheat and a moderate reaction to gluten/glaiden

So I am having so much trouble finding ANYONE who can relate.

When I have wheat/gluten I get the oddest symptoms 24-36 hours later.

Please tell me someone can relate!!!! Please!

  • dizzy!!!!
  • left leg just gets numbish - I present as normal but it's so aggravating
  • back ache/stiff joints
  • fatigue/no get up and go

Side vent: I went to this other natural dr. who thought it was all bogus and gave me these supplment with other sensitivites I tested positive, INCLUDING a B complex with wheat germ. Needless to say, I don't take those anymore, but it just bugs me how people just stare at me like I'm making these symptom up. Some restaraunts are so cold hearted. I was left with nothing to eat but iceberg lettuce, broccoli & onions the other day. I was nearly in tears because I didn't bring any food w/me.

One of my friends gave up gluten as she gets extremely achy and stiff from eating it, so you're not alone.

Side vent - always think with your own head about anything you ingest!

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I'm with ya, my doctor tells me im not Celiac, and does not believe I have a gluten issue yet all of my problems whent away when I whent gluten-free, casin free. Anyhow if I hapen to get CC everything comes back for about three days, the joint pain, dizziness, confusion, weakness, depression , constipation, insomnia and yes the leg problems, it feels like worms are crawling thought my leg muscles. Migraines and neck stiffness also becomes a problem. I tell people it's like having the worst flu ever for about 3 days. The confusion and lack of ambition sucks its like losing 100pts of IQ for a few days, I get nothing done, I just stare off into space for long periods of time when I should be working. So Your not alone!

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Celiac can be very hard to diagnose I had been sick for 5+ years. I didn't present with the usual symptoms so no one picked up on it. I have been scoped but the G.I. wasn't looking very hard and was looking for something SO out of the ordinary it didn't return any results. After being in and out of the hospital for much of last year I was desperate and went gluten free. It saved my life. My stomach symptoms are stomach pain and constipation. And those symptoms are the easiest ones to deal with. My doctor diagnosed me celiac because of my inability to maintain vitamin levels and off of symptoms. I get HORRIBLE brain fog, sadness, fast heart rate, and achey muscles when I have had any gluten or even have been cross contaminated. It doesn't matter what they call it, the diagnosis is the same. Have your vitamin levels been checked?

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    • Squirmingitch, I forgot to mention best of luck to you during the storm! I hope you are safe and that your home isn't impacted too badly! I'm on the coast in SC so we will see some storms from it but nothing near as bad as what you will have. Take care and good luck.
    • SquirmingItch, I really appreciate you gathering info for me! To answer your questions, yes, I'm on Dapsone now and have been on it for about 4.5 weeks. I have been gluten free for the same amount of time. I started on 50 mg of Dapsone which didn't seem to help much. I spoke to my doctor about it and after about a week she raised it to 100 mg. Since then I did notice a huge improvement in both my rash and itch. I no longer have any active rashes and my itching isn't completely gone but it's very minimal. I have been getting weekly blood tests done and will soon be moving to monthly.  My DH skin biopsy was done before the gluten free diet and Dapsone. My results for the skin biopsy came back as inconclusive, but even with those results, my doctor was convinced I had DH. I specifically asked her about the fact that she took the biopsy directly from the lesion rather than next to it and if that affects the result. Her explanation was that if it's a fresh enough lesion that isn't scratched, there should be IgA antibodies present. But she said that an inconclusive result isn't surprising because the IgA antibodies come and go from the skin so quickly that it can be very difficult to get a positive result, even in someone who is positive.  That's when she decided to run the celiac blood panel on me. And even though those results came back positive for the deamidated gliadin and negative for tTg, she still is very convinced that I have DH. I am happy that my doctor seems to be certain, but I would just feel better if the results were more definitive. The one other thing I am waiting on is I have been asked to attend grand rounds at the local academic hospital in 2 weeks. I guess grand rounds is where all of the academic dermatologists and dermatopathologists get together to review certain complicated cases. They will meet with me, review all of my pictures, biopsies and blood tests. My situation has been so complicated so they asked me to come. I am hoping maybe then I will get some more answers. 
    • It sure is, it really is. 
    • shellyb, I have info. for you & you may yet be able to get an official dx from your dermatologist as she sounds like she would be willing to learn. If you are dx'd with dh it is definitive & no other testing is needed. You don't need to see a GI. Im in FL & have had a long day watching Tropical Storm Hermine & making preparations for it's track which is over where I live. I'm tired! I will have links for you to reputable medical info. on the rash but it make take me till tomorrow or even longer if we lose power.  I'll be back as soon as I can. Question: You're on Dapsone now? How long have you been on it? How is it working for you? Are you getting the proper testing at regular intervals to make sure it isn't doing bad things to you? Were you gluten free before the skin biopsy?
    • Thank you so much for your quick response, GFinDC. While I wouldn't be completely opposed to another skin biopsy, I already had 4 done (3 were done prior to my dermatologist suspecting DH) so I don't love the idea of  yet another hole and scar on my body. Plus, fortunately I don't have any fresh lesions now, which I believe is needed for the biopsy. I wish I would have known to see a GI before going gluten free but I was so desperate to get any relief that I started that and Dapsone as soon as my doctor mentioned it to me.  My rash is definitely symmetrical and I have it in all of the "classic" DH spots although it basically spread over my entire body. As much as I'd like a more formal diagnosis, I really don't think I can go through all of that again. It was so bad that not only was I getting no sleep but I had to change my sheets every morning because there was blood all over them. Sorry, TMI. The worst part is that this all developed during my ninth month of pregnancy and got much worse after I delivered my baby. So not only was I dealing with this insanely itchy rash but I had a newborn and a toddler to take care of.  My daughters' pediatrician did mention doing DNA testing on me first and then my daughters to see if there's any concern that they may be susceptible. I may just go that route for now. I was just curious if others have had similar test results to mine and how did their doctors treat it? Thanks again!
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