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


Twiggy

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Twiggy Rookie

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
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

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

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

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
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

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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    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
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