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About DebNC84

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  1. My rash was caused by gluten. the rash is called dermatitis herpetiformis (DH) - it's presentation varies. Sometime like hives, sometimes one single lesion, always intensely itchy and get's worse at night. I went gluten free and the rash stopped itching and started healing. But ANY slip ups with accidental ingestion of gluten caused a re-appearance of the dreaded itch and rash. I don't know all the technical terms but it takes a long time 6 mos to a year for the gluten to get out of your blood stream. Studies show that only 20% of celiacs get DH and those lucky souls are actually MORE sensitive to gluten than the rest. So it's possible that you and your sister are still getting trickles of gluten from products that are not FREE of gluten but labeled gluten free. You know the FDA only requires 20 ppm or less of gluten. that's enough to trigger my system to react. also search about the use of iodine reacting with gluten causing DH - i avoided raw sea salt for years because of that. I hope this helps.
  2. If you don't get the diagnosis you are happy with go to another doc. Try to find a Celiac Friendly doc. OR you can do what i did and give up and just go gluten free. I didn't need a doctor to confirm that if my gas, bloating, migraines, depression, joint pain, rash, dry skin and brittle nails went away when i went gluten free that i must have celiac. AND 6 months after i went gluten free on my own i had some blood tests repeated that i had done when they were trying to figure out what was causing my severe rash, all the things that were "wrong" with me or abnormal in the the first blood tests, went to normal on the second test. INCLUDING MY THYROID LEVELS! Oh, i didn't mention that during this time they diagnosed me with early hashimotos.. 6 months later i was miraculously cured from this progressive thyroid disorder according to the blood test results. I didn't have hashimotos to put it bluntly. I am almost 10 years gluten free with no positive Celiac diagnosis. But let me tell you this, My daughter's neurologist did a DNA test on her 1 year after she too went gluten free and it came back positive for Celiac. so. js. That's my story.. in short.
  3. i failed to mention that they are processed while still alive for 45 minutes in some sort of solution to "clean out" their digestive system - before their demise. I'm pretty positive that this is gluten - the owner of the company is going to investigate into it more deeply. THE LATEST - today i broke out with a rash on my back / I have DH... sooooo.... all signs point to.
  4. I recently purchased some fresh water prawns - i have NO allergies to seafood or fish, btw. I was SO excited about trying them since they were farm raised with no chemicals or antibiotics. "all natural" - they were delicious as promised. I cooked them in garlic butter after peeling them. split them with my husband - he ate, I ate, three hours later I got sick (vomited until my stomach was empty), he didn't. I have Celiac - he doesn't. I was nauseated, no fever, no cramping and woke perfectly fine the next day and didn't miss a beat. I called the grower and talked with her for a bit today. The prawns are fed a feed that consists of wheat and other ingredients - which isn't actually eaten by the prawn - they actually feed on the algae that is formed in the water because of the feed. question #1 - has anyone here had any trouble with prawns like I described? question #2 - do you think it is far fetched to think this could be a gluten related issue?
  5. well.. I know that I know this is DH - AND i've gotten my first mouth ulcer in three years.. i'm thinking there might be a chance there is a small amount of gluten in the "gluten free" bread i'm buying ... sigh.
  6. My husband and I just bought some chicken houses that hold 20,000 birds each - I have been having skin issues - face and body since i started working in the houses 3 weeks ago. I've been using a face mask for the last week I am in the process of finding out what exactly is IN the chicken feed that might be causing me issues. Oh.. did I mention i have celiac disease with DH - fun stuff. wondering if there is anyone out there with similar farming experiences that could help me know what I need to do - as far as what type of mask to use and such. Thank you!
  7. i have issues with a itchy scalp and hair loss! I also have DH - do you? my itchy scalp seems to be aggravated by sweating.. like wearing a cap in the summer while outside makes me sweat and then comes the itch... washing my hair helps relieve the itch. I have read that increasing water intake during this time may help - My hair loss occurs each time i get glutened significantly - it seems.. handfuls come out while washing my hair - it's depressing to me.. I have long hair and know that it will be "forever" for that hair to grow back and be long again. Yes it does grow back .. at my forehead.. i see the new hair growth.. looks like thin bangs... sigh. Just have to quit taking chances with food. I do great at the house but then I will try to eat out and something always happens. I have recently gone soy free - as well. Come to find out - soy has enzymes that block the absorption of many vitamins and minerals.. like anyone with celiac disease really needs that!
  8. I CAN'T BELIEVE IT! *shakes head* I don't think i would have allowed them to use that stuff. But obviously it was necessary or your doc wouldn't have used it. That rash should calm down - the longer you are gluten free the less effects you should have from accidental "glutenings" Hopefully none.. but if you are like the rest of us.. it'll happen. The proteins from the gluten stay in your system for up to 2 years.. that's what creates the DH that and Iodine - Iodine reacts with the gluten in your system and causes the rash. I KNOW what you are going through.. I wouldn't wish it on my worst enemy!! It's pure torture! Cutting back on Iodine at least for a little while will help - NO SEA SALT! I know that iodine is necessary for thyroid function but... you just look it up, ask your doc and decide what to do. I am using non-iodized salt - and my Thyroid levels are better than they were before i was gluten-free - Hope this helps.. at least knowing someone else shares your pain. I hope all is well with the x-ray results - stay calm - all will be fine.. probably anything they find will fix itself with your new gluten-free lifestyle - our bodies have amazing healing capabilities - God made us that way!
  9. Your battle sounds so similar to my story!! You will be fine! Those things that you miss are insignificant because your health and well being are at stake! We all know how it is. The longer you are gluten free the more that you will realize what that toxic crap was doing to your body. My rash stopped itching within three days.... and slowly the rashy bumps went away and healed up - the scars even fade over time. Look up the effects of iodine in your system and DH (dermatitus herpetiformis) I don't want to give any bad advice but i Know what worked for me... Hang in there.. You can do this!
  10. i've searched and can't find any info on this.. and honestly would just like to know if someone else experiences this symtom I'm gluten free but of course - occasionally i get "glutened" - when this happens i go through a list of symptoms that string out for about two weeks.. one of the more annoying of the symptoms is a vaginal odor that only happens after intercourse (unprotected) - it's a vinegar like smell and lasts for a day or two after sex. This is one of those "private" things that just doesn't come up in normal conversation.. ya know? This has become one of those things , that when it happens.. I KNOW i've been glutened.. does anyone have any answers for me? If it helps i also have DH - Thanks!
  11. you HAVE to stop eating processed stuff with added salt!! no bacon , no ham, no chips after awhile from my experience a little won't hurt you but I think you have to deplete the iodine built up in your system. I'm sorry this isn't good news... but I'm pretty sure it will help you... eat only foods that you prepare yourself.
  12. Thank you for your reply! in the beginning of my quest to find out what was causing my rash, which took 8 mos of doctors, blood tests, doctors, more tests, doctors, biopsies -you get the picture. The endocrinologist that I saw because of my high thyroid levels actually told me that I was in the beginning stages of Hashimotos - he sent me home with synthroid - i was to take 12.5 micrograms a day - it shot my blood pressure through the roof - may I add that I have never had a blood pressure problem.. I stopped taking the drug - and called the doc - he said I'm not ready for the medicine obviously and to get retested in 6 mos. - a few months later, I went gluten free and stopped ingesting as much iodine as I could. - a few months after that - I got another blood test and among a lot of other things that went back to normal, my thyroid was in the "normal" range. May I add that it seems that my hair only falls out when my DH flares - but I think i've got a handle on that now... I shouldn't have any more flare ups - since I've figured out how sensitive my system is to iodine. I AM CONCERNED ABOUT CELIAC PERSONS that don't have DH - are they just as sensitive to iodine as I am? But since they don't have "the rash" they are keeping the iodine in their systems and possibly hurting their thyroid? There is a definite link between thyroid disease and celiac disease from what I'm reading - is their any studies to find out why? Is it the iodine? I was wondering if anyone knew of any studies that were taking place - or that have been done.