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kelliac

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

Everything posted by kelliac

  1. Have a quick question. Does anyone have babies with strange sores? My 7 month grandson was accidently glutened several weeks ago (baby food had barley flour, daughter didn't notice). He had the usual first reaction of many dirty diapers. Then a week and a half ago he had a sore on the tip of his finger. Looked red, puffy, irritated, like a burn....
  2. DQ3, subtype 8 is one of the main celiac genes (known as DQ8), DQ3, subtype 7 is one of the gluten sensitive genes. So you have two gluten sensitive enteropathy genes (one formally known as celiac and the other known as the catch all gluten sensitive) and all your children (if you have them) will have at least one gluten sensitive or celiac gene. This info...
  3. Also have/had thyroid problems. Started getting goiters in early 20's. Was prescribed anaprox/naproxen for inflammed thyroid. Lived on the stuff. Felt great for the first time in years. They (goiters) would come and go, first seasonally, then monthly. Eventually had difficulty swallowing. Docs felt my neck and would say "feels normal." Labs were always...
  4. Agree completely. Look how many people are on this site with DQ1 (myself included). This is not a matter of "us" (celiacs, DQ2, DQ8) vs. "them" (non-celiacs, gluten sensitive or not), but rather we all suffer the affects of gluten. Whether we see a loved one experience it, or our insurance bills skyrocket due to millions who are undiagnosed and the myriad...
  5. thank you. just wondering where to find brownies and cupcakes already made (not packaged for grocery but for a bakery type setting). best friend has a place in PSL and she's heading there in January. Everytime she goes she misses her baked goods. I saw a Whole Foods listed in PBG. Their gluten-free listing has their bakery department with gluten-free...
  6. Looking for a good bakery that sells gluten-free cookies, brownies and the like in Port St. Lucie, Florida area. Even stores that are not specifically gluten-free that have gluten-free selections would be great. Thanks so much in advance!
  7. my usual response, do the enterolab gene swab test. funny how the gi says "all was fine and normal with it." Then they still want to do the biopsy and colonoscopy next wednesday. you can still have damage to the villi and normal blood work (I did). Just ask the doctor to take at least 15 biopsies from various spots while they're in there. I saw the...
  8. Hi, I'm a DQ1,1 (6,6) who tested 5 of 5 biopsies positive for celiac. My mother is DQ1,1 (5,6) and she is the same. So, yes, we are living proof that you can have villi damage and not have DQ2 or 8. What I love best though is the enterolab testing since it is non-invasive. The swabs are great for everyone, especially testing of babies. The stool...
  9. Also have plantar fascitis (spelling?) in the right foot, mostly. On and off for years. Much less since going gluten free but still suffer every so often. Learned from a massage therapist that celiac/gluten intol causes problems with connective tissues such as ligaments and tendons and the foot arch ends up troublesome with most celiacs sooner or later...
  10. I personally get sick when I eat tofutti products, saw some similar reactions in this forum. Thought it might be something else so I tried tofutti two more times after the first episode. I was then fairly certain something in Sour Supreme, Better than Cream Cheese and Chocolate ice cream was the culprit. This is the response I received from Tofutti regarding...
  11. You are sooooooo right!
  12. My celiac friends and I always talk about "suspected" celiac celebrities. Here is our list and reasons. We've even tried to contact some to suggest the possibility, but of course, they are difficult to reach. List includes living and dead. Strictly our opinion (not fact). For fun, not seriousness. See if you agree. . . List #1 - Liz Taylor (short...
  13. Robix, your story sounds too familiar. How many people seek help from medical professionals to be told it's nothing. Just yesterday, a dear friend of mine saw her doctor, mentioned her positive genes for gluten intolerance DQ1, subtype 6 (per enterolab) and was told "Gluten Intolerance is NOT celiac disease so go ahead and eat all the wheat and gluten you...
  14. They are a certified laboratory. Dr. Fine is an M.D. It's really more of a lack of knowledge issue with doctors when it comes to recommending enterolab. They just don't know much about the subject due to their medical school training. The information regarding gluten intolerance grows by leaps and bounds everyday. It's hard to keep up. However, as far...
  15. I don't think your average doctor knows much about enterolab and their great work. They only know what they learned in medical school and that knowledge is only as good as the person teaching the subject. What CMCM said is correct. She really nailed the subject. Get on www.enterolab.com and read some of the info. What is great about Dr. Fine/enterolab...
  16. Not a lawyer, but misrepresentation or false claims sounds legally wrong to me.
  17. I've tried to read all the posts regarding this subject so if I missed something, please don't jump all over me. I don't know the details of this young child's lawsuit, however, I sympathize with him/her and what he/she faces in court. The lawsuit is good in that it makes people ACCOUNTABLE. People should not claim items are "gluten free" and "safe" for...
  18. Had the same problem with several of their flours. Called the company and was told that temperature changes can cause strange smell/color/taste. They were going to call the grocery store chain and inform them of the importance of room temperature storage. They thought that perhaps the warehouse was too hot. I personally used the products many times without...
  19. Did a little research. It looks to be celiac, but don't quote me. Check out these links regarding DR4 and decide for yourself. As for the rash, has anyone mentioned Dermatitis Herpetiformis? Open Original Shared Link Open Original Shared Link Open Original Shared Link
  20. Sounds very familiar. I'm also DQ1,1. Experienced the frequent dizziness, one ER visit with severe vertigo, numbness, tongue tied speech, etc. Before I was tested by enterolabs, had colonoscopy and endoscopy. The biopsies came back positive for celiac. My relatives with DQ1 had abnormal biopsy results with lymphocytes on villi tips. Many people...
  21. Does anyone know if prednisone, remicade and/or imuran can affect labs? What about endoscopy/biopsies? If those drugs suppress the immune system, do they make the villi appear normal (albeit temporarily).
  22. I agree with Judy in Philly--WOW!!! Perhaps we should all copy this link, paste it in word and give it to every doctor we see. They should be reading what's out there as well. Obviously (as we on this site know) gluten sensitivity is rampant and unfortunately underdiagnosed because the people that can help us (physicians) are not getting the info they...
  23. Celiac/Gluten Sensitivity sure seems to be a life long roller coaster. However, like a lot of posters have said, hopefully the highs will outweigh the lows. Most people I know think it's the end of the world when they go gluten free. Good advice is to think of it as the beginning of a great new world--of greater health. More good advice is to think of...
  24. Thank you so much. I'll try them both this weekend. The kids will be excited.
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