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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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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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