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Return Dh After 4 Months Gluten Free


geeze

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geeze Rookie

For many years I had an itchy lesion on my buttock in the same place which would disappear after about a week. It recurred 1-3 times a year for many years. In about March of this year I developed a rash on a knee and elbow and after much study through the internet, I learned the connection between the rashes and all of the abdominal symptoms I had for many years. in April I was diagnosed by blood test and history with celiac disease and have been gluten free since that time. The abdominal symptons and rashes disappeared. Several of my blood levels are low and I am working on that. I have felt really good about the progress - well worth what I have given up.

Today I have the return of the itchy area on my right buttock, same spot as before. I also have had some bowel rumbling for the past day or so. I am very careful with what I eat, do not eat out and read everything on a product label. Nothing new has been added to my diet. I am somewhat concerned that maybe I am not doing as well as I thought.

Has anyone out there had this situation where you feel like you are doing incredlbly well and then have a set back for no apparent reason Thanks for any info.


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Guest j_mommy

Yes, I have had situations like your's. I have been gluten-free since may. I'll be going along...eating foods I make, I don't eat out and BAM I get the buttock lesion and the big D.

Currently going through that now.....am in the process of rechecking EVERYTHING in my kitchen!!!! The only thing I can think of it's cross contamination of a product...ie processed in teh same faciltiy as wheat/gluten products!!!

Good Luck!

gfpaperdoll Rookie

cross contamination in gluten free grains is a possibility. Are you eating any processed crackers or any of the gluten free grains for baking?

geeze Rookie
cross contamination in gluten free grains is a possibility. Are you eating any processed crackers or any of the gluten free grains for baking?
geeze Rookie
Yes, I have had situations like your's. I have been gluten-free since may. I'll be going along...eating foods I make, I don't eat out and BAM I get the buttock lesion and the big D.

Currently going through that now.....am in the process of rechecking EVERYTHING in my kitchen!!!! The only thing I can think of it's cross contamination of a product...ie processed in teh same faciltiy as wheat/gluten products!!!

Good Luck!

Thanks. I feel better just knowing I am not alone in this. Do you think a biopsy of the lesion is necessary. I have been diagnosed by blood test and would prefer not but my husband seems to think I need to get a second opinion. I am fine with all of this - he is in denial. Hope I am doing this right, I have tried to reply before and it has never worked.

geeze Rookie
cross contamination in gluten free grains is a possibility. Are you eating any processed crackers or any of the gluten free grains for baking?

I have not had any grains of any kind and only baked the gluten-free bread once maybe two months ago. I guess this is just going to take tincture of time and continued watching carefully. Thanks

Ursa Major Collaborator

First of all, you may get outbreaks of DH for up to two years after going gluten-free, even if you don't get any gluten at all. The reason is, that it takes that long for the gliadin deposits under the skin to disappear.

The bowel problems could be caused by dairy, or possibly soy. It may not be gluten at all. You might have to try figuring out if you have other intolerances besides gluten.


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    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
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      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
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