Jump to content

pricklypear1971

Advanced Members
 View Profile  See their activity

  • Posts

    3,514

  • Joined

  • Last visited

  • Days Won

    34

 Content Type 

Profiles

Forums

Events

Blogs

Latest Celiac Disease News & Research:

Everything posted by pricklypear1971

  1. pricklypear1971
    Excellent news things are moving forward. I would INSIST they take samples for Celiac testing while they scope.
  2. pricklypear1971
    Compression helped me. I'd pack a super soft washcloth under my arms and squeeze. Especially in the evenings when it would swell and pop. And ice packs. Lots of ice packs. I slept with ice packs.
  3. pricklypear1971
    I am not very symptomatic...and that said my symptoms have changed multiple times over the past two years. The only way I figured it out was that "it" happens more than once after eating out. And that's the ONLY time I feel "it". Then, I'm pretty sure it's gluten since that's the only thing I avoid. I've gone from a headache in 2 hours to a ball in the...
  4. pricklypear1971
    I ignore the tj's list and go by labels. I eat the raw slivered almonds without problem. Whole raw almonds, too. I also use the raw chopped and whole pecans, sesame seeds. I have used the cashews and Brazil nuts and was ok. I've been ok with the plain nuts from mixed facilities. The nuts covered in chocolate, spices...I don't think I was so lucky once...
  5. pricklypear1971
    Ice packs!!! Some people use numbing gel - I think Walgreens brand is gluten-free. I think it's the kind you'd put on scrapes, or maybe gums for a toothache. Search in the dh forum for it. There's a website for gluten-free meds: Open Original Shared Link
  6. pricklypear1971
    Certainly, if you have a butcher that specializes in gluten-free it would be a great place to buy meat. Most of us do not have that option, though. If I did I would certainly take advantage of it! I've lived in small and large metro areas and good butchers (or having a choice in butchers) are very hard to find. I can find untreated meat at natural markets...
  7. pricklypear1971
    I've never had a gluten issue with fresh meats. I generally do not buy preformed parties unless marked gluten-free. I try not to buy any meat with "natural flavoring a" or sodium injections. Sometimes you have to really look for pork... As far as trusting a butcher or a manufacturer - well, I disagree. Small butcher shops may have less stringent qc and...
  8. pricklypear1971
    But they are still victories! Yay! I can't describe how thrilled I was to eat a whole egg...can't imagine how you'll feel.
  9. pricklypear1971
    I found my skin improved going gluten-free - all over my body. Mysterious itches, lumps, bumps, red spots I'd had all my life - gone. Wasn't immediate but it happened. My skin does not appreciate lots of chemicals and I do better with less. I also need something to speed up surface shedding, or I break out. I use Origins Brighter by Nature pads every...
  10. pricklypear1971
    It doesn't look like it. Question. Have you been tested for Hashimotos Disease or tested for hypothyroidism? Both can cause exercise tolerance issues.
  11. pricklypear1971
    It may be fluid. I lost a bit going gluten-free - noticed I was less puffy but didn't weigh. We are tweaking my thyroid meds and I just lost 4-6 lbs in a week...and again it's fluid. Both celiac and hashimotos are autoimmune diseases, which are known to cause/come with inflammation. Some people lower inflammation tremendously and quickly going gluten...
  12. pricklypear1971
    Yes, we get it. Unfortunately . Dh is life altering. I changed my life to accommodate that rash. It effects your body, mind....disfigured you, and makes you cry. Most doctors don't recognize it, and fewer can get an accurate biopsy from it. Often you've been treated with steroids for "mystery rash", so blood and skin tests can be falsely negative...
  13. pricklypear1971
    Well, I certainly hope you've found your answer. If your rash is dh you have celiac disease....so that means a gluten free diet for life. I'd visit the newbie section here and start reading about how to get the gluten out of your life - including dreaded "cross contamination". Also, if you are dealing with dh, you may try a period of low iodine to help...
  14. pricklypear1971
    I would tell the doctor that ice read about the procedure and ask them to describe step by step what they will do. Ask about how they determine the clear skin, the solution, etc. Take the guidelines with you to show if there are questions. Open Original Shared Link
  15. pricklypear1971
    Yes, steroids can give a false negative for celiac testing. I have a citation somewhere - I think it's in the new guidelines for dxing children without scoping. There's a flow chart and at the end is "steroid use?" under a negative tests when all evidence points to positive. I'm not in a position to search for the doc now, but you may find it by searching...
  16. pricklypear1971
    Yes, move on with a gluten-free lifestyle if you think it's DH. See what happens. If it is dh it will likely flare again. Then get your biopsy. Sometimes we can't get answers - or the only answer we get is the one we give ourselves.
  17. pricklypear1971
    If other AI diseases are ruled out, I would go along Diana's lines... I swell from AI flares. If I'm sure I wasn't glutened, then I immediately know its my thyroid - which is tied to the adrenals and hormones. So, your doc is on the right track - but It's probably because Celiac is an AI disease. I can swell quite a bit during my cycle, and before I was...
  18. pricklypear1971
    Then learn how to make your own bread products at home. Make your own gluten-free/SF mix and bake bread. I'm not sure I understood your statement about being picky about your meats and veggies. Do you not like them, already eat enough of them....? If you want processed gluten-free/SF food it will be hard to find and expensive. I suggest you learn to cook...
  19. pricklypear1971
    I would also ask for a thorough thyroid work up - tsh, free t3/t4, reverse t3, tpo ab....because Hashimotos and celiac run together quite a bit. I am both, and experience exactly what you are talking about regarding weight gain and exercise. And the key to getting the inflammation down (probably half of my weight) is getting my thyroid and adrenals somewhere...
  20. pricklypear1971
    Have you been tested since this happened for other autoimmune diseases? ALL of them? Some people report swelling with histamine reactions and allergies. You can develop either at any point.
  21. pricklypear1971
    You'll get hungry. Yes, it's normal to through stages like this when withdrawing a food your body doesn't like. Equally normal to be ravenous.
  22. pricklypear1971
    Yep. I feel the same at a tsh of 8 as with it at 2. My frees don't move, high rt3. My next labs will be interesting, since adding more t3. SOMETHING has been happening. We'll see how it translates.
  23. pricklypear1971
    Yep, inflammation. My gums will bleed when I'm inflamed. Took me forever to figure it out. Mouth problems go with swollen feet for me.
  24. pricklypear1971
    Well, sorry to bring on the negatives, then... 1) corticosteroids are contradictory to autoimmune testing. Steroids are used to put AI disease into remission....so if you were on them during ANY testing you may get false negatives. Hopefully your testing was done prior. 2) if it is DH, steroids can put it into remission; however, everyone I've talked...
  25. pricklypear1971
    The truth is the medical community does not know what being "NCGI" means - other than you are gluten sensitive, and you fail the Celiac tests. To tge best if my knowledge, there are no long term studies of the health problems found in NCGI patients. There are no studies showing what "a little bit of gluten" does. There are no studies about what happens...
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.