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Everything posted by Fundog

  1. I was told I don't have celiac, but I get "The Rash" whenever I eat even a trace amount of wheat. At the very least , I can say without hesitation that wheat is not my friend, and I avoid it like poison. I may not have celiac, but I must live as though I do. Apparently, so should you.
  2. Lol, there seems to be glitch in the program. The boys are heading to Inglis. (See above, in the quote box) Gosh, I hope they aren't on the road when that storm hits!
  3. The skin biopsy is most likely to be successful if you are still consuming gluten, and if you have NOT been scratching, and if you are NOT taking any steroids, either oral or topical. Scratching and steroids can damage the saturated pattern that the pathologist is looking for. They are also more likely to find something if you still have some fresh spots showing up. A specimen needs to be taken from a clear bit of skin NEXT TO a lesion for the antibody test. The doctor may biopsy a lesion additionally just for basic pathology though. That's what my dermatologist did. He took two specimens, one for antibodies and one for basic pathology. Unfortunately for me, I had been gluten free for several weeks as part of an allergy elimination challenge. I had also been scratching like mad, and had been using topical steroids and antihistamines, and antibiotics. So I got a negative result and a bill for $500. it's okay though. I know my skin reacts violently to gluten, especially wheat. So I will not be doing anymore tests.
  4. My son is attending university in Daytona Beach. He and his roommates have just evacuated. Stay safe!
  5. I'm sorry you've been having such a rough time. I'm thinking you may have accidentally ingested something containing gluten, and that's what caused your reaction. A lot of people will react quite severely to even a tiny bit of gluten. That's why there is so much on here about avoiding cross contamination. Even though you've been diagnosed with NCGS, you still need to live as though you have actual celiac disease, and be very careful not to cheat. Your body will punish you for it. :/ In the meanwhile, nurture yourself kindly and gently, just as you would after a severe bout of food poisoning or intestinal infection. Comfort foods, like broths and soups and smoothies. You might want to avoid lactose for a few months too. Sometimes we lose our ability to digest lactose when our intestines are damaged and vulnerable like yours is right now. And remember healing takes time. So does learning the gluten free lifestyle. Expect some setbacks occasionally. You WILL get better!
  6. Butterbean, do go have a read of the dermatitis herpetiformis section. See if anyone's story sound familiar to what you're experiencing.
  7. What other tests has the hematologist done? How are his other blood values (mcv, cbc, leukocytes, neutrocytes, platelets, etc?)
  8. I have a protein powder called Vega Veggies and Greens. I got it from Costco. It is vegan and gluten free, but it does contain sprouted whole grain brown rice, and xanthan gum. The Rash is contingent upon how long it takes to purge the antibodies out from under your skin. This could take a couple of years, I am told. Meanwhile, it can flare at random, without any provocation. However, some people find that iodine can exacerbate the inflammation, so they avoid or limit their consumption of shellfish, kelp, nori, and iodized salt, for example. (Carageenan is an ingredient to watch for.) I've only been gluten free for ten weeks, so although I'm a lot better than I was, my arms and legs still look pretty ugly. Baking soda baths and Caladryl lotion help immensely when I'm feeling particularly itchy.
  9. (((HUGS))) to you. I'm so sorry you're going through this. Stress (and both divorce and having a kid away at college are stressful!) will exacerbate your symptoms by triggering an inflammatory response, a "flare." I have not been officially diagnosed with celiac disease, however, I most definitely have a problem with wheat, as evidenced by a nasty skin reaction. When my nurse practitioner and I figured it out, I finally started to get better. I finally had hope! Then one week I forgot to read a label. My skin reacted violently. I just couldn't understand why I was getting worse, when I had improved so much. It turned out, I had been eating small increments of wheat every day for a week! Oh, I just sat down and cried! I came very close to giving up, believing having horrible, painful, itchy, red skin and being miserable would be my lot in life forever. But then I resolved to start over, and be more careful. Fortunately for me, I have a supportive family who also reads labels before cooking anything they intend to offer me, or cook for me. Once again I am seeing improvements in my condition, and I have hope again that I CAN live a gluten free lifestyle. YOU CAN TOO. DON'T GIVE UP!
  10. Thanks for the update. It's nice to get a follow up from people, and find out what new information they've learned about their conditions.
  11. Fibromyalgia is also worth considering. IBS often goes hand in hand with fibromyalgia, the way celiac and thyroid disease are connected. Ten years ago, fibromyalgia was thought to be strictly psychosomatic, but now doctors are realizing that's not true, that it as real as lupus, ms, celiac, and any other autoimmune disease. Oh, and a lot of fibromyalgia sufferers find that avoiding gluten helps to minimize their symptoms.
  12. I enjoy participating on treat days by making some gluten free goodies to share. It is especially gratifying to see wheat eaters enjoying a slice of gluten free banana bread, for example, and taking second helpings. And like you, I just remember that eating anything with wheat in it is equal to splashing battery acid on my skin. It's just not worth it!
  13. Since I went gluten free, my acid reflux (and it was severe!) went away. I do still get some heartburn, though not nearly as bad as it was. I've realized certain foods will trigger the heartburn for me: peanut butter, vegetable juice, spaghetti sauce, peppers, salsa. I find that sleeping on my left side at night helps. If I take those chewable antacid tablets, I wait until I've burped before I lay down.
  14. I do not envy you. I hope you get some answers though. I've had two colonoscopies and will have a third before I turn 50. I've got a system that makes the prep much easier: Even though they said I could skip the soft foods day and just wait for liquids (because of the chronic diarrhea), I did anyway. My scope was on a Friday, and started on Tuesday. I ate all the soft comfort foods I loved--baked macaroni and cheese, ramen noodles, eggs over easy, toast with honey, yogurt, ice cream, mashed potatoes and gravy.... no veggies unless they were in a juice or soup. Wednesday I followed pretty much the same, but with mostly thick liquids. Thursday of course was clear liquids only. I treated it like a spa day, resting, relaxing, conserving energy, (staying close to the bathroom), and got myself all kinds of delicious clear beverages. I KEPT MY STOMACH FULL AT ALL TIMES. That was key right there. The moment I felt the slightest empty grumble, I drank something yummy. I found beef broth to be especially satisfying and comforting. When it came time to drink the horrible stuff, I was pretty much clean already, so if I vomited (which I did the second dose the morning of the procedure), it didn't matter because I had done a good job prepping by diet alone. The doctor rated my prep quality as "excellent." My hubby was all kinds of jealous at my vacation approach to the prep, telling me it wasn't supposed to be a pleasant experience, lol! Of course I had chronic diarrhea, so that made it much easier. If anyone reading this is constipated, I would recommend starting soft foods five days in advance, instead of four. Good luck!
  15. See your doctor. Get your vitamin levels checked, and your thyroid levels also. (When was the last time it was tested? It should be done once a year at minimum, some doctors prefer twice a year.)
  16. Okay, just for clarification: is that just until all the antibodies are purged from the system, or is that forever? I'm having a bit of a flare up right now myself, though not nearly as bad as before going gluten free. I've only been gluten free about ten weeks, so I know I've got a long time yet before I really clear up. But please tell me there is a light at the end of the tunnel. I'm so tired of itching and scratching!
  17. When my mother saw me a couple of months ago, she thought I had lost weight since the last time she saw me. I have not, but even I have to get on the scale after looking at myself in the mirror sometimes! I know my clothes fit better. I can make it all the way through dinner without wanting to take my pants off. That's just one of the many symptoms I've had for many years, and didn't appreciate it until it went away.
  18. That's it. I need a guinea pig, lol. Too cute.
  19. Okay, well just be mindful of symptoms of anaphylaxis, because that can be very dangerous, even life threatening: hives, swelling anywhere on the face, but especially the mouth/lips, and difficulty breathing. Try taking some diphenhydramine hydrochloride (in the U S, commonly known as Benadryl). If your respiratory symptoms get worse--if your throat feels tight, if your lips turn a bluish color, if you feel dizzy or lightheaded-- call an ambulance, immediately. I personally am allergic to wheat, in addition to being gluten intolerant.
  20. What specifically do you mean by "weird?" I get xanthan gum online, because I have not found it in the supermarket. My favorite sandwich bread recipe uses the brine from a can of garbanzo beans instead of eggs-- that's kind of weird, but it works surprisingly well! One of my very favorite gluten free snacks is garbanzo beans. I don't even turn them into hummus or toast them in the oven or anything! I just drain them (I save the brine for bread, lol), pour them in a bowl, and put some salt and red wine vinegar on them and just eat them. I can't help myself, I will eat an entire can in one sitting! Another favorite is an apple, cut in half, cored, and smeared with plain organic peanut butter. Sometimes molasses is good for dipping an especially start apple into.
  21. I may have been a bit slow to notice, but it took me about six weeks gluten free before I realized my clothes were fitting better, and I could sit through dinner without wanting to unzip my pants. Before then, I didn't understand what people meant by feeling bloated, lol. Now I know, I was bloated! But I don't have meteorism, so my experience might not be the same as yours.
  22. I just want to add: once you do start a gluten free diet, and reach that magical moment when you suddenly realize how much better you feel, and start noticing symptoms you weren't aware of until now -because they've gone away- you will develop an aversion to foods with gluten, having a negative association of those foods and feeling unwell. Yes, there are moments when I see a food I like a lot, and realize I can't have it anymore, and then I have momentary regret. But most of the time I am rejoicing in a relief of my symptoms, and delighting in better health.
  23. Good grief! :o. I'm so sorry, I wish there was something I could do or say to help you. I agree with the NP, your primary needs to be requesting copies of your records from the other doctors, as well as the records and lab reports from your hospital stay. They are supposed to work together as a team, not just individually out in left field.
  24. Yes it most certainly could be a false negative, and I would bet you a dozen donuts that it is (gluten free, of course. ) At the very least you can be sure it is related to gluten. These gluten rashes take forever to clear up. I don't know about you, but whenever I start to doubt my gluten intolerance, I just look at my skin, and the old blood stains on my sheets, and I am reassured that it's not all in my head, and I need to avoid gluten as if it were a bucket of battery acid.
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