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Dermatitis Herpetiformis

Discussions concerning the skin condition associated with celiac disease.


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  • Posts

    • trents
      Not long before my celiac dx I was experiencing proctalgia fugax but it seems to have disappeared and I haven't been bothered with it in over 20 years.
    • Kmmmn
      Sorry, late to the party.  I started experiencing proctalgia fugax (sp), when I was about 16 - I am now 59.  This is a very painful spasm of what seems to be the sphincter muscle.  This almost always happens in the night and wakes me. For the first few decades this would usually happen around once a month on Sundays.  Very weird I know, but it was that regular at times you could set your watch by it.    In my 40's symptoms became less frequent.  I found that by essentially shoving an ice pack up my backside I could get some relief. 18 months ago I was diagnosed with Celiac and the PF now occurs pretty much weekly, sometimes more often.  I only just came across this thread so as yet have not mentioned PF to my GI doctor (thought it was just a 'me' thing) but will next time I see him in March.  I feel for you, it is indeed crippling pain.  I am a teacher and I think I have had PF 2 or 3 times in the classroom and have had to call the office for cover until the symptoms and sweating subside.  Good luck.  Hope this helps in some way. KMMMN
    • Dulcita
      Celiac, and sensitive to latex, kiwi, avocado, bananas and tapioca. After having a reaction to another Amy’s product (canned chili) which is labeled gluten-free and has no listed tapioca ingredients, I have realized that for those of us who are sensitive to tapioca, it may be even worse than I thought. Not sure if I’ve got this right, but I do know that companies that focus on gluten-free foods use a lot of tapioca. If a certain product doesn’t have any tapioca ingredients, they see no reason to list tapioca or its relatives in the “known allergens” or the “produced in a facility that also uses …..” statement — because it hasn’t been designated a known allergen.  They probably don’t even feel it necessary to apply the kind of Best Practices protocols (extra cleaning) to a production line that may have used tapioca in a previous product. So we may be ingesting tapioca when we are eating something, seemingly tapioca free, produced in a gluten-free dedicated facility. Really discouraging. 
    • Katya773
      Hi Everyone,   I recently purchased this wheatgrass not realizing that it wasn’t gluten free. I had two servings before I got really sick. Abdominal cramps , diarrhea and horrible nausea. My daughter read the label and told me it wasn’t labeled gluten free. I thought this was safe because supposedly it’s healthy. I called WholeFoods and they told me that they can find out more about the product and email me when it was picked and harvested. I was diagnosed back in 2019 and I really should know better! Anyone else had a reaction to wheatgrass powder? 
    • emily 1
      Yes, unfortunately I was diagnosed about 15 years ago. Some of us I guess the gut never heals and from what I've learned you can actually have a setback which is probably the stage I am at where I actually have become more sensitive to more items.
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