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apoppy

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  1. Since going gluten-free I have suffered several episodes of the hidradenitis suppurativa flaring up for no apparent reason. So I thought. With every episode I have been able to look back at what I ate and discover the hidden gluten. Yesterday it was salami! Another time it was malt. And I stupidly ate swiss n' rye cheese without even thinking about the rye. My daughter pointed it out to me after I complained that I had no idea what was causing a new HS outbreak, diarhea, and severe headache. I now keep a daily diary of everything I eat and any symtoms. I want to be able to show my doctor accurate records so that he may be able to help other sufferers. I always was a label reader because I must also avoid MSG. I now know that I must read EVERY label and educate myself on safe and not safe foods. I made gluten-free pumkin pie (crust) for Thanksgiving and everyone was surprised that it tasted good. My family just assumed that eating gluten free had to be miserable. My local grocery store had a few of Bob's Red Mill gluten-free baking products, but sold out and didn't seem to be restocking any of it. I typed up a list of the gluten-free products I would buy and presented it to the manager along with a short description of celiac desease/ gluten intolorance. That very same week the shelves were stocked with almost every item I asked for!
  2. I have suffered with Hidradenitis Suppurativa for over 30 years. I have some stage 3 areas. I recently decided to go gluten free because of severe diarrhea, headaches, rashes, joint pain, fatigue and more. Much to my surprise, the HS went into complete remission after about 4 to 6 weeks of eating gluten-free. The only time this had ever happened before was when I tried the Atkins Diet twice in the past. But I didn't make the connection then. After 6 weeks of eating gluten-free, my husband convinced me to stop eating gluten-free. He didn't like me "obsessing" over labels and questioning everything that went into my mouth. He even said maybe we shouldn't be married if I have to eat so differently. I ate a wheat roll for dinner and the next day I ate regular speghetti. You would not believe how bad the HS returned! I had 12 NEW lesions and most of the old lesions re-activated. I was in so much pain. Along with it came terrible joint pain, fatigue, headache and return of the dreaded diarrhea. It finally hit me! I discovered on my own that the HS was surely connected to eating gluten. As soon as I stopped eathing the gluten once again I felt so much better. I was able to move without pain after 2 days and most of the oozing had stopped. Now I notice that brief encounters with gluten (giving my grandson cookies, making regular dinners and lunch for my family, cleaning up the kitchen that has bread crumbs) results in a return of the itching and burning and oozing of these lesions. You would not believe how many doctors I have seen for this condition. I have been to The University of Pittsburgh Hospital, Cleveland Clinic, Western Reserve University Hosp. and a slew of dermo. docs locally. Not one ever mentioned gluten.
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