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Bubba's Mom

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Latest Celiac Disease News & Research:

Everything posted by Bubba's Mom

  1. Bubba's Mom
    Thanks for looking. It says Mayo Genetic Order Test name Celiac The report says: While the patient lacks the gene pairs usually seen in Celiac disease, there are rare exceptions in which celiac disease can occur with only one half of the gene pair. Method: Low to Medium or High Resolution Molecular test. Performed by Mayo Clinic Dpt of Lab Med...
  2. Bubba's Mom
    For the life of me, I'll never understand the genetic testing for Celiac, other than I've read in a lot of places DQ2 and DQ8 are the Celiac genes. I tested negative on the Celiac panel, but I had been gluten light for a while because I was too nauseated to eat. I got a very strong positive DX on the results of my endoscope. I was rescoped in December...
  3. Bubba's Mom
    Thanks for the suggestions Karen! We are both in panic mode. I hope I don't lose my marriage over this blasted disease. He says he can't deal with this crap. There's no pleasing me.
  4. Bubba's Mom

    ARCHIVED Help!

    Bubba's Mom posted a topic in Coping with Celiac Disease

    The past couple of days I've been having strong gluten-like symptoms and have been racking my brain to figure out what has gotten me. I just found out my Hubby got several bales of WHEAT straw and scattered them in the back yard because the dogs were tracking mud in. When he told me his great solution to our mud problem I freaked out! He said he noticed...
  5. Bubba's Mom
    The coconut oil can be applied externally for that perianum itch from yeast. I took the pure food grade oil I cook with and put some in a small container to keep in the bathroom to be used as needed. I have one of those plastic containers that film used to come in to carry some when I'll be away from home. It's instantly soothing! The carprillic acid...
  6. Bubba's Mom
    If you were DXed with Celiac..you CANNOT eat gluten! I would think having your system inflamed by gluten wouldn't help your other problem? Don't buy processed gluten free versions of junk food. They are full of hard to digest starches/carbs. Get fruits, veggies, and meats, eggs, and dairy if you tolerate it. A bag of potatoes and carrots are pretty cheap...
  7. Bubba's Mom
    After going gluten-free I found I was reacting to soy, and maybe dairy? I went to my allergist, who was treating me for seasonal allergies, and asked about food allergy testing. He did a panel for 90+ allergens via skin prick tests. I didn't react to anything. Then, he did the blood ELISA test for the 8 most common allergens. I got negative results on...
  8. Bubba's Mom
    It seems like you have a very good neurologist? Many don't think of gluten/Celiac as a reason for neurological symptoms? I'd love to know if he read some research on the blood tests, or if he just figured it out on his own as an answer to why some people test negative? Interesting stuff!
  9. Bubba's Mom
    Thanks so much for your support! My GI was supposed to fax my medical records. I was told it was 26 pages. I also have all of my medical records because I was in the process of switching PCPs and haven't delivered them to the new Dr. yet. I have my folder with important points written down. Thanks for reminding me of that. I hope Mayo can get...
  10. Bubba's Mom
    We just can't rely on getting a blood test and KNOW that we don't have Celiac or gluten intolerance. Every test they have right now can give false negatives. Let your body be your guide. If you or your family members feel better off gluten, there's no reason to keep consuming it! I hope some day soon they can come up with better tests. Right now it...
  11. Bubba's Mom
    It certainly sounds like you have a problem with gluten? A family history of colon cancers puts you in a higher risk for being Celiac/gluten intolerant. It seems like a lot of people find they have issues with gluten when they go on the diets that restrict carbs? That seems to be the case with you too? Hopefully, you've found the answer to your trouble...
  12. Bubba's Mom
    I had started on a diet that's supposed to starve out yeast. Unfortunately, it cuts out all grains, starchy vegetables, and sugar. It's pretty hard to take in enough callories to sustain me. Since being in the hospital I've gone back to eating some grains, and starchy vegetables. I was told I need to take in at least 1800 calories a day. I figure...
  13. Bubba's Mom
    It's said that 20-30% of Celiacs test negative, yet they have the disase. You could have an intolerance rather Celiac too? The best way to know if gluten bothers you is by going off it. Then if you have some and react, you know you have a problem with it. Living without gluten won't hurt you. Just be sure you are getting the vitamins that would have...
  14. Bubba's Mom
    I don't have any restaurant/travel info..just wanted to share your joy and wish you a happy trip!
  15. Bubba's Mom
    I finally heard back from the Mayo clinic. We thought I'd be sent right there. Nope..they said they could get me in in April. I told the lady I probably won't be alive in April. I told her that I'm still losing weight and growing weaker by the day. I told her my Dr suggested I may have Whipple's disease, and left untreated it's fatal. I have had it...
  16. Bubba's Mom
    I haven't been to the grocery store where I was getting reactions, for a while, so I don't know? I know I feel better OFF the PPI med. I have less URQ pain and it seems like I digest my food a bit better. I'm sure my bone density is happy I'm off that med too?
  17. Bubba's Mom
    LOL! Clear as mud to me. I was tested for the DQ2 and DQ8 only. My Dr. didn't entertain the idea of there being any other genes associated with Celiac. He said my genetic testing was negative for Celiac. I'd explain that info posted above to him if I knew what it meant. Maybe I should copy and print it off?
  18. Bubba's Mom
    It's hard when you don't really know if gluten is an issue for you or not? If you eat "cleanly" during the week and then splurge on the weekend you would be keeping the inflamation of your immune system active by doing so. That's enough to make a Celiac continue to have symptoms. It's also possible that you are gluten intolerant, or gluten sensitive...
  19. Bubba's Mom
    Raven..I just wanted to say I hope they can figure out what's going on with you. We dearly love you and my heart breaks at the thought you aren't feeling well. It does seem to me that you aren't taking in enough calories, and as a result it's very likely you are low in some nutrients? You need to take in "fuel" or you'll be running on empty and feel...
  20. Bubba's Mom
    I have one too. I don't know if it's from Celiac..or bearing down during child birth, or some other cause? It seems like they find them while doing CT scans for other complaints fairly often? On occasion mine spasms and pushes outwards. Once I masage and push on it, it goes back where it belongs. I've read that they can contribute to GERD.
  21. Bubba's Mom
    Texture is the one thing that I can't seem to get right just yet. I have more experimenting to do. One thing I'm doing that you might find helpful too, is to keep notes of how a recipe turned out. You can just add a note to the page with a post-it-note or write directly on the recipe. Things like..add more sugar or add less water, then note by how much...
  22. Bubba's Mom
    It's possible you could have a stone that moved and blocked a bile duct causing the pain? They can move around and may not cause symptoms when in a centered position, or it could be that it's not squeezing the bile out like it should? A lot of Celiacs have gallbladder problems. I'm dealing with one that has a slowed function found through a HIDA scan...
  23. Bubba's Mom
    I signed it and noted that the GE wheat has become toxic to many of us. Don't let GE corn be responsible for the next disease epidemic!
  24. Bubba's Mom
    good to know! Thanks for keeping us posted.
  25. Bubba's Mom
    I don't know about the high test score? Maybe you are just slow to heal? I CAN tell you that I had a surgery where I had most of my rectum and part of my colon removed due to cancer years ago. They said I should recover from the surgery in about 6 weeks. My incision was healed by then, but it actually took more like 6 MONTHS to get back to feeling back...
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