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Ive Been Gluten Free For Five Days......

Twiggy

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Twiggy Rookie
Twiggy
Posted

I have vast improvement in my symptoms already,the stomach pain has eased and the bloating is starting to go down.I have'nt got the results of my gut biopsy back yet but i was feeling so poorly that i thought i'd go gluten free for 7 days to see if i felt any better and i'm glad i did.There is just one thing thats bothering me though,i think ive had DH since my mid-teens (i'm 39 now) and if i stop eating gluten would i get a false negative on my skin test the same as for the gut test??? Input would be greatly apreciated,thanks :P

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The Fluffy Assassin Enthusiast
The Fluffy Assassin
Posted
I have vast improvement in my symptoms already,the stomach pain has eased and the bloating is starting to go down.I have'nt got the results of my gut biopsy back yet but i was feeling so poorly that i thought i'd go gluten free for 7 days to see if i felt any better and i'm glad i did.There is just one thing thats bothering me though,i think ive had DH since my mid-teens (i'm 39 now) and if i stop eating gluten would i get a false negative on my skin test the same as for the gut test??? Input would be greatly apreciated,thanks :P

I don't have DH, but as I understand it, the skin test can only be taken when you have an outbreak (and only from skin right next to an outbreak). If it's DH, you'll only have an outbreak if you eat gluten. Therefore, if you're off gluten, you shouldn't have an outbreak again and a skin test wouldn't be possible (or needed). But if you have a powerful need to know for sure that it's DH, yes, you would need to keep eating gluten until you have an outbreak to be tested.

ang1e0251 Contributor
ang1e0251
Posted

My DH took about as long to clear up as it was a problem for me; 6 - 8 weeks gluten-free. I've read other posters say that the antibodies take a while to leave your skin. Is your test soon? I think you could eat enough to break you out again. I don't think it's like the long term usage you need for and endoscopy. Maybe someone will post who knows more than I.

Twiggy Rookie
Twiggy
Posted
  • Author

Hmm,i feel too well to risk making myself ill again....i dont know what to do :) I dont know if i really do need a dignosis,i'm convinced i have DH so thats prob good enough and besides that,if i dont eat anymore gluten it wont be a problem in the future.I have noticed however that i seem to get upset and a washing-machine type tummy now when i have milk or milk products (cottage cheese) i will just persist with this cause many of you say its temparey until you heal a bit.I cant believe that when i go to the loo im starting to have sem-normal stools without ''that'' familiar smell i'd gotten so used to.The thing thats also putting me off getting tested is that by the time i have a flare up,show my GP and wait for an appt with a skin specialist the rash will have cleared again.Sometines it lasts a month sometimes a week and sometimes it may clear completely for a month....tricky right?

ang1e0251 Contributor
ang1e0251
Posted

Don't jump the gun! You haven't even heard the results from your biopsy. Don't assume you need the DH to get a dx. I know it's hard to wait but hang in there. I didn't feel the need to make myself sick again for a dx. My body told me what I needed to know. That's a personal desicion you have to make but you are cool here at the forum whether you go for further testing or not.

The Fluffy Assassin Enthusiast
The Fluffy Assassin
Posted
Hmm,i feel too well to risk making myself ill again....i dont know what to do :) I dont know if i really do need a dignosis,i'm convinced i have DH so thats prob good enough and besides that,if i dont eat anymore gluten it wont be a problem in the future.I have noticed however that i seem to get upset and a washing-machine type tummy now when i have milk or milk products (cottage cheese) i will just persist with this cause many of you say its temparey until you heal a bit.I cant believe that when i go to the loo im starting to have sem-normal stools without ''that'' familiar smell i'd gotten so used to.The thing thats also putting me off getting tested is that by the time i have a flare up,show my GP and wait for an appt with a skin specialist the rash will have cleared again.Sometines it lasts a month sometimes a week and sometimes it may clear completely for a month....tricky right?

Not that it's a diagnosis, but you can always look at pictures of DH and see if they at least look familiar, eg: Open Original Shared Link

Twiggy Rookie
Twiggy
Posted
  • Author

Thanks for the Link Fluffy :D it sums my rash up to a ''T'',i'm just going to continue with my gluten-free lifestyle regardless of a DX,i feel fab!

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    • captaincrab55
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      By captaincrab55 · Posted

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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
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      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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