Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Anyone Not Have A Stronger Reaction To Gluten After Going gluten-free?
0

16 posts in this topic

I've noticed that this seems to be a common theme, but it also may just seem more noteworthy to post about a more severe reaction to gluten after going gluten-free than to post about an unpleasant but not especially spectacular reaction.

Starting this thread in the hopes of pulling for the other end of the sample and maybe getting a more balanced perspective.

And yes, I am aware that even if you don't have a huge reaction, with celiac it is not OK to eat gluten, and it *will* damage you even if you don't have an immediate, punishing reaction. From the sound of it, accidental gluten ingestion happens to most of us at some point, though, so it strikes me as relevant information even if fully committed to being gluten-free.

1

Share this post


Link to post
Share on other sites


Ads by Google:

I was going to post something similar. I was gluten free for 3 weeks then decided to "test" (a piece of bread) and had no reaction. At least no tummy ones. I was really surprised since my tummy has still been really bad even without gluten so maybe I really don't have a gluten issue?

0

Share this post


Link to post
Share on other sites

If I accidentally get some gluten, i.e., in a Rx or such, my reaction is the same as before gluten free. Of course, I recognize it for what it is and am more aware of it, but it is not any different.

0

Share this post


Link to post
Share on other sites

Outside of some mild cramping and "C" on occasion, i seem to really not have any :blink: so strange.

0

Share this post


Link to post
Share on other sites

I fit this post. I had no symptoms prior to going gluten free - and have had no symptoms since going gluten free - four months ago. If it weren't for the positive blood tests and positive endoscopy - I would question whether or not I really had Celiac! I can't imagine that I haven't messed up being totally gluten free over the past four months. I was actually hoping to get a tiny bit more sensitive so I would know if I am sticking to the diet correctly.

0

Share this post


Link to post
Share on other sites




I was glutened a couple of times in the first two months and I remember those reactions being the same as those I had before going gluten-free. The symptoms just seemed more noticeable because I was not longer used to stomach aches and bloating.

0

Share this post


Link to post
Share on other sites

Not me. I was diagnosed as a silent celiac and have been strictly gluten free for about 19 months now. As far as I know I have only been accidentally glutened twice. The only way I knew is that I found that one product packaging had been labelled incorrectly; the other was in a restaurant in Europe that caught my mistake after the fact. Didn't get sick or anything but I am still unwilling to ingest any gluten. Sometimes I wish I had some indication of being glutened - not very sick, obviously, but just something minor.

1

Share this post


Link to post
Share on other sites

I fit this post. I had no symptoms prior to going gluten free - and have had no symptoms since going gluten free - four months ago. If it weren't for the positive blood tests and positive endoscopy - I would question whether or not I really had Celiac! I can't imagine that I haven't messed up being totally gluten free over the past four months. I was actually hoping to get a tiny bit more sensitive so I would know if I am sticking to the diet correctly.

Omg this is pretty much exactly me, even down to the timings. I got screened because my sister was diagnosed, however I've never had any noticable symptoms. Accidentally got glutened a few days ago (was so annoyed, my own fault for not checking properly) and didn't really react at all.

I know that those who have strong reactions would call us lucky, but I was actually hoping I'd have something noticable as a barometer for whether I'm getting CC'd or accidentally ingesting. I know that I have to follow gluten-free strictly, but without any tangible benefit after 4 months it's pretty frustrating.

2

Share this post


Link to post
Share on other sites

Physical symptoms are a poor indication of what is actually happening in the intestine. Even people on a strict gluten-free diet can have damage that persists for a long time, even years. While this forum is not intended to provide medical advice, everthing I have read would indicate that if you have had a positive diagnosis you should be avoiding even traces of gluten.

0

Share this post


Link to post
Share on other sites

I've been gluten free for 8 years, and for the first six of them I had very strong reactions

to the rare glutening I experienced. I went over a year without being glutened, and then

this past May I was glutened by a restaurant. I knew it happened in the restaurant, but

I am a 48-hour reactor, so I had time to prepare. It was the mildest reaction I've ever had,

which may have something to do with the digestive enzymes, detox tea, and charcoal I

started taking right away, or might not. So either that combo works GREAT (possible) or

my reactions are now much less severe. Or both!

0

Share this post


Link to post
Share on other sites

Ummm...in my post above I spoke too soon. Had the first obvious gluten reaction in my life this week. And by obvious I mean something that I could without question immediately tie obvious symptoms to a product that contained gluten. Of course I would never, ever deliberately ingest gluten and I, too, realize that despite being so-called asymptomatic (I had other symptoms in retrospect such as miscarriages but did not tie it to gluten at the time) damage is still being done. Anyway, 15 little minutes after eating 1/4 of a pudding cup, I suddenly had a migraine (rare with me these days), vomiting, swollen lips, diarrhea and plugged sinuses. Sure enough. Somehow I had missed "wheat starch" on the label. I am such an avid careful label reader! It is actually a relief that I got sick so I now know what to look out for. It was very difficult before not having a clue whether I was glutened or not! Well, now I know. ;) Makes me wonder whether I had some sort of allergic reaction, too, considering the swollen lips and plugged nose/sinuses. Now I can better relate to those of you who get so ill!

0

Share this post


Link to post
Share on other sites

love2, with swollen lips and vomiting that does sound like a possible allergic reaction. May be worth talking to a doctor to see if you sshould have epipens around. I am not an expert, but my son has nut allergy, and we were advised that if you have had a reaction it can become more severe on subsequent exposures.

0

Share this post


Link to post
Share on other sites

love2, with swollen lips and vomiting that does sound like a possible allergic reaction. May be worth talking to a doctor to see if you sshould have epipens around. I am not an expert, but my son has nut allergy, and we were advised that if you have had a reaction it can become more severe on subsequent exposures.

Yes - I'm booking a doctor appointment anyway and will definitely bring this up. It does indeed sound like an allergic reaction. I am thankful Benadryl took care of it but one never knows with subsequent exposures!

0

Share this post


Link to post
Share on other sites

I didn't have strong reactions at first, I might get a little bloated if I ate quite a bit (at first I used to cheat here and there), but over the last year and a half I stopped cheating and every time I've been accidentally glutened since, it's been about 10x worse then the last time. It's strange how much it increased for me, especially since I was pretty well asymptomatic at first. Now if I get glutened I'm very sick for a week (bloating, nausea, fatigue etc...) and it's been a month and a half since my last gluten instance and I'm still feeling it unfortunately. It also seemed to have knocked out my immune system too, as I am normally very healthy but have been sick with either the flu or a cold since then.

0

Share this post


Link to post
Share on other sites

I didn't have strong reactions at first, I might get a little bloated if I ate quite a bit (at first I used to cheat here and there), but over the last year and a half I stopped cheating and every time I've been accidentally glutened since, it's been about 10x worse then the last time. It's strange how much it increased for me, especially since I was pretty well asymptomatic at first. Now if I get glutened I'm very sick for a week (bloating, nausea, fatigue etc...) and it's been a month and a half since my last gluten instance and I'm still feeling it unfortunately. It also seemed to have knocked out my immune system too, as I am normally very healthy but have been sick with either the flu or a cold since then.

Don't underestimate how much of the "lingering glutening" might be the flu. If you're in the US, flu is EVERYWHERE right now.

0

Share this post


Link to post
Share on other sites

I got "glutened" today at work. I have been gluten-free since Jan. 3. I needed a fork for my lunch, and went to the cafeteria to get one. 15 minutes after eating, I had horrific diarrhea - and was in the bathroom for 15 minutes. The only thing I can think of, is the students touch as many forks as they can before they ever pick one.

No more cafeteria forks for me!!

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,385
    • Total Posts
      920,613
  • Topics

  • Posts

    • 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!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,455
    • Most Online
      1,763

    Newest Member
    JLeigh
    Joined