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Kay DH

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by Kay DH

  1. Kay DH
    I started with GI symptoms last September after getting the flu, and some high stress from people trying to kill me on my bike commute home (geez, you think they would leave an older woman on a bike lane alone). I started gluten-free about a month after onset of symptoms (other than the undiagnosed DH symptoms I'd had for a few decades). The Celiac panel...
  2. Kay DH
    Actually, it can take 1-2 years after going gluten free for the DH to clear up in some people. So, you can have the DH rashes and still be gluten free in terms of diet. It is a lot quicker to clear the gluten from a GI system than to clean the immune response from within the skin.
  3. Kay DH
    Gluten reaction and DH are slower than they are for GI problems. As such, it is probably a good idea to be on gluten when you are getting the biopsy so that the immune response is sufficient to "ping" the positive reaction. It is especially important to get a dermatologist that is expert in DH. I've shown the rashes on my legs, back, and arms to I don...
  4. Kay DH
    I bike about 15 miles/day commute on my mountain bike. Lara bars are great for longer rides, or even just grapes or other fruit. Gatoraid is gluten-free, but tends to get sticky if the water bottle or camelback leaks. Good to eat protein before the rides, such as eggs. I've noticed that I'm building more muscle now that I'm gluten-free, than before (gluten...
  5. Kay DH
    One difference between an allergic response and an immune one is that, (1) in allergic reactions you body responds by generating chemicals that cause the reaction in you, and (2) an immune reaction to invasion is your body attacking itself. So, an allergic reaction to gluten could have the same symptoms as an immune response, but the immune reaction would...
  6. Kay DH
    I've been gluten-free since getting the flu last fall. gluten-free is for life; even if your symptoms subside there can still be damage. Once your villi heal then they will be better able to process milk sugars and protein. If the lactose caused you problems you might be able to drink milk with lactaid. My tolerance for gluten is much much lower than...
  7. Kay DH
    Good point regarding the ataxia. If your mother hasn't been tested for Celiac then it is important to do so. There are a great many symptoms that can be associated with gluten intolerance, and finding a doctor familiar with Celiac (not an easy task) can help to sort all of these out. I have a niece with lots of GI problems that is gluten-free, but she...
  8. Kay DH
    It gets frustrating. It is why sometimes the best family is people you aren't related to. It takes a long time to adjust to being gluten-free. I started last fall after symptoms kicked in following the flu. It has taken me some time to adjust and for gluten-free to be automatic. Yes, I sometimes have issues with friends. I took almost all my own food...
  9. Kay DH
    For me it is variable. CC can hit in 1 hour or the next day and symptoms are D, bloating, sometimes cramps. D is generally one rather massive event (amazing how much can be stored in a GI tract. Next time I have a colonoscopy I'll just have a crouton instead of laxative) and the bloating takes 3-5 days to go away. Massive glutenization can result in the...
  10. Kay DH
    Celiac is genetic and can be triggered by stresses such as being ill; mine kicked in after getting the flu last fall. I cannot eat any gluten-full food without symptoms. The only wheat-rye-barley I can eat is (real, not flavored) sourdough bread; the bacteria in the starter are in a symbiotic relationship with the yeast The bacteria eat and modify the...
  11. Kay DH
    I was asymptomatic until I got the flu last September. Then the GI and other floodgates opened. I went off gluten in November not because of the D and other GI problems, but because of extreme stiffness in my hands in the morning. The rheumatologist was of no use and I read that going off gluten can resolve the inflammation. Well, for me it worked in...
  12. Kay DH
    Easiest (well, maybe not easiest but best) way to tell if you have gluten intolerance or sensitivity is go go gluten-free and see how you feel. Gluten is hidden in many foods, so it is not easy until one gets the hang of it, which took a few months for me. All of my tests have been negative, blood and endoscopy, but I cannot eat even trace amounts of gluten...
  13. Kay DH
    A couple of other points come to mind. You could of course have multiple sensitivities, such as to dairy products. Peripheral neuropathy can be associated with Celiac, actually there are a mess of symptoms associated with gluten intolerance. Other symptoms can include mood swings and depression; gluten can affect your whole body. Gluten intolerance can...
  14. Kay DH
    Your symptoms are very suggestive of gluten intolerance. Even if you had the Celiac Panel blood test and it came back negative, you could still be intolerant or sensitive to gluten. It would be good to have all of the gluten tests run before you went off gluten, otherwise you commonly get false negatives. If gluten is the or a culprit, then it probably...
  15. Kay DH
    All your tests can come back negative and you can still have Celiac or gluten sensitivity. In other words, after all your tests are done then it is good to go gluten-free, and gluten is hidden in a lot of places. Even minor CC from utensils that have touched gluten-foods, hydrolyzed vegetable protein...etc can cause symptoms. I was tested two years ago...
  16. Kay DH
    I noticed that once I went off gluten completely, including hidden gluten, that my tolerance for CC dropped a lot. Before I could eat 1/2 and English muffin without D and now it only takes about a crumb. When I would eat "gluten free" I would get symptoms because the gluten-free flour was from a bin, the food was "processed in a plant that processes wheat...
  17. Kay DH
    Stay off gluten. It takes time for your mind, body, and emotions to adjust to the changes in life from going gluten-free. I am self-diagnosed gluten intolerant because of all of my symptoms and because even CC makes me ill. My primary care doctor just said don't eat gluten, my GI didn't say anything. I have been on a full gluten-free diet since November...
  18. Kay DH
    I've been gluten-free since getting the flu last September and the start of GI symptoms. I've probably had DH for a few decades, but never diagnosed or tested, other than a negative Celiac Panel two years ago. I've been completely gluten-free since Jan (it takes a while to find out every place the nasty molecules lurk). I am very sensitive to CC. If you...
  19. Kay DH
    I'm not a veteran, but my first gluten-free Thanksgiving was last year. Stuffing was a mix of gluten-free breads and (my) sourdough wheat; when my breads get a bit stale I cut them into squares and freeze them for later stuffings or pulverize them for breading. gluten-free works well for breading, and cornstarch is a good substitute for gravy thickener...
  20. Kay DH
    I've been gluten intolerant since getting the flu last September, although I have probably been intolerant for years but flying under the radar. Even if a Celiac's reactions are minor, there still can be damage to the GI tract and other areas of the body; it is a systemic immune response. I am very sensitive to cross contamination (CC) now. I've gotten...
  21. Kay DH
    Low "ferritin" (iron) and vitamin D levels are common in Celiac disease, the iron suggests anemia. Actually low D is common in the general populace. I caught the flu last Sept and a couple of weeks later had bad reactions to bread, such as stiff joints, muscle aches, D, lethargy, brain fog, etc. I went off gluten in November, and then had the Celiac Panel...
  22. Kay DH
    As one of the other posters recommended, you might try the biopsy of the area around the lesions before the endoscopy. I've had symmetrical extremely itchy rashes on my calves, arms, and back for about 30 years, showed them to numerous doctors with no diagnosis, and only had one Celiac Panel test 2 years ago (negative, but that is not uncommon with DH)....
  23. Kay DH
    I've been gluten-intolerant since getting the flu last September. CC results in my GI tract purging and minor lethargy, but being slapped upside the GI tract by a bit gluten hit results in a stronger reaction. I suspect everyone has different reactions, rate of reactions, and recovery times. For me, a heavy gluten hit results in depression, mood swings...
  24. Kay DH
    I've been gluten free since November. After getting H1N1 and high stress last September I started having GI and joint problems. My RA scale was not elevated enough for RA, but the joint stiffness and pain went away about a month after going completely gluten free (takes a while to realize where all of the attack glutens are hiding). My rash went away after...
  25. Kay DH
    I went gluten-free in November, after H1N1 in September. gluten-free flours do not bind with liquids the same way wheat flours do. If by adding liquids you're referring to making sour dough, yes you can make and use gluten-free sour dough and starters. Initially, it is easiest and best to learn about strengths and weaknesses of the various gluten-free...
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