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Just Curious
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But if gluten isn't the culprit how come all of my symptoms, including the DH I had for more than 20 years, went away when I quit eating gluten? Not that it matters, but I have gotten the flu shot every year (except this year) since I last got the flu 18 years ago. 18 years ago I did not get the flu shot and boy was I sick.

richard

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celiac disease was identified long before the flu vaccine was available.

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I don't do them either, I never have, although I probably should since I am prone to getting some extremely nasty flus. I'm just kind of nervous to have something injected into my body that I've never had before, for fear of allergic reaction or it making me sick or making one of these diseases of mine act up somehow (celiac disease as well as Colitis, and a problem with tachycardia.) Is that even a realistic fear?

Anyway I've never had one...do the rest of you get them?

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I got flu shots in 2003 and 2004 and I was diagnosed with celiac disease in March 2004.

This flu shot theory is interesting to me. I've had celiac disease-like symptoms for years (probably since I was 13 or 14) but most of them seemed to worsen and I developed more celiac disease symptoms after my first flu shot in 2003. The sickest I have ever been with celiac disease was a few weeks after my first flu shot last year.

Just some questions though, are you theorizing that someones first flu shot in 1999, 2001, or 2003 (or the first one in 10 years) may trigger celiac disease? or make it worse? and why those years?

I'm interested to see the results of your study!

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i can definitely say no flu shot "gave" me celiac. never had one, got diagnosed when i was 18.

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In response to the question as to whether or not the flu shot could trigger Celiac Disease, the answer to your question would be, "No." However, flu shots do contain thimerosal, which does contain mercury. Ammonia is there, too.

Depending upon the batch you received, sources outside the US will tell you that there was a higher than normal level of Thimerosal in the years I mentioned. Going on that premise, I was merely in search of something that would explain for the response in Cytokines and an open ended reaction with Nitrogen, as it would relate to Celiac Disease. I am merely looking for some further supportive evidence for my larger theory once I have it wrapped up. Thanks for your responses.

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;) never had a flu shot here either :( sometimes i wish i had, but not yet :) deb
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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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