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Feeneyja

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

Everything posted by Feeneyja

  1. Feeneyja
    First of all, I am someone who is not celiac diagnosed (tried the gluten challenge but got too sick to do it long enough so the celiac testing is not considered accurate). My daughter, who is 12 now, is also in the same boat. Not celiac diagnosed but gets incredibly sick with lots of neurological symptoms and now hives if she gets glutened. In many ways...
  2. Feeneyja
    From what I understand, high insulin with normal blood glucose levels is still considered pre-diabetes. Your body needs to produce a lot more insulin to regulate blood glucose levels because your cells are insulin resistant. So a few things come to mind. First, you are already low carb, but you are definitely not keto if your body is producing insulin...
  3. Feeneyja
    Cyclinglady, Do you know if someone with Mast Cell Activation Disorder is sensitive to all high histamine foods, all of the time? Or are there particular triggers? I ask this because in October we adopted the AIP diet for my daughter (she is 11) and rashes, joint pain, and breathing issues all went away. I have suspected dairy as the culprit, but...
  4. Feeneyja
    Thank you so much everyone for sharing your experiences!! I made an appointment with an allergist/immunologist at University of Chicago. I guess that is where we will start. Unfortunately it’s not until May 21st. Because an antihistamine has helped, we will keep going with that. I’ll make an appointment with her pediatrician in the meantime.
  5. Feeneyja
    Oh wow. Mast cell activation disorder sounds like it. She has had other random symptoms such as chest pain and acid relflux recently. And yes, an antihistamine did help one night at its worst. Ugh. Fermented foods are one the the things we have successfully implemented for gut healing. But they are high histamine.
  6. Feeneyja
    This is so maddening. She is scratching herself into large welts. It’s hard to tell what the rash even looks like, she makes it look so bad. It is worse at night and cortisone cream helps a little, but it’s only temporary. We have been strictly gluten-free for years (don’t eat any grains or packaged foods - just a whole food diet), so I don’t expect any bio...
  7. Feeneyja
    After being glutened twice over Easter Weekend (Friday and Sunday), several days in to her reaction she has developed a very itchy rash. It started on her head, around her hairline and ears and has moved all around her body. It is worse at night, but cortisone cream seems to help. By morning it is mostly gone with some tiny red spots but new places crop...
  8. Feeneyja
    And another point about Wheat Zoomer. It tests for the 3 different tTG autoantibodies: ttg2, ttg3, and ttg6. The celiac panel tests for ttg2 autoantibodies. Dr. Hadjivassilou’s research has implicated Ttg6 autoantibodies in neurological disease, and I think I have seen tTG3 in relation to DH. Some very respected researchers (Dr. Marsh, Dr. Hadjivassilou, ...
  9. Feeneyja
    It absolutely DOES test for celiac antibodies. Those tests are scientifically validated and a part of the panel. It also does test for antibodies to other parts of wheat (including gluten). Those tests are being used in research labs as I type. The controversy lies in what exactly those tests mean. High levels of antibodies are technically meaningless...
  10. Feeneyja
    If you look up what Wheat Zoomer tests, it does include the celiac auto-antibodies, but also antibodies to the parts of gluten themselves. Prior to the tests for auto-antibodies, antibodies to gluten were the go to blood test for screening for celiac disease. But it’s not as specific to celiac, so they are no longer done in standard labs in the states (...
  11. Feeneyja
    Have your thyroid checked...thoroughly. These are also symptoms of Hashimoto’s and it is common with celiac disease.
  12. Feeneyja
    On the plus side, at least the doctor did test for deamidated gluten peptide. Most docs don’t do dGp. If your doc didn’t (as neither my doc nor my daughter’s doc did), you would be left in limbo. So be thankful you have a diagnosis and a solution and get to a celiac savvy doctor for future monitoring.
  13. Feeneyja
    I used vital wheat gluten for my challenge. I wanted to know if I was reacting to gluten or FODMAPS. Clearly gluten was the problem. I can’t quite remember how much I took, but I think 1 Tablespoon equals 1 slice of bread. You might want to do a search on that to confirm. I second what Ennis said. Be careful about contaminating your gluten-free kitchen. ...
  14. Feeneyja
    I’m glad you figured things out. Yes, it’s all a bit painful. But when you feel great, it helps with the shock and disappointment. You might want to check out information on the Autoimmune Protocol (AIP). It’s a science based elimination diet designed to help you determine your food sensitivities, heal the gut, and provide your body with optimal nutri...
  15. Feeneyja
    I get horrible sores in my mouth when I get glutened. It’s usually a day or two post glutening (after the nausea has past). On the roof of my mouth, my tongue, my gums. During my gluten challenge they got so bad that my teeth started to get loose. I have no clue what kind of sores they are. But gluten is definitely the trigger. I have met folks with o...
  16. Feeneyja
    Lactose intolerance occurs when you lack the enzyme (called lactase) necessary to properly break down the milk sugar lactose. That undigested milk sugar cannot enter the body. But it then feeds gut bacteria producing gas, bloating, discomfort/pain. There are no extra intestinal symptoms (this is an important point). However, gut dysbiosis can ultimately...
  17. Feeneyja
    Yep, me too. After my gluten challenge, I had terrible anxiety (I was close to going to the doctor for it but didn’t want meds), and joint pain I that wouldn’t go away. Also some dizziness/eye focus thing. Actually, my husband thinks I’ve had the anxiety for some time and the challenge just pushed me over the edge food tolerance wise. I took out milk and t...
  18. Feeneyja
    Seriously, why are we posting articles like this?
  19. Feeneyja
    This is a much better paper than the article posted above. http://www.mdpi.com/2072-6643/The Overlapping Area of Non-Celiac Gluten Sensitivity (NCGS) and Wheat-Sensitive Irritable Bowel Syndrome (IBS): An Update It is very thorough, and describes the complications in illucidating the causes of NCGS and how to separate it from IBS. Of note from...
  20. Feeneyja
    19 is not young for this. One can be diagnosed at any age. How about this stat: before anyone understood what actually caused celiac disease, most folks diagnosed with it died. The complications when consuming gluten affect every system of the body. Lack of symptoms doesn’t mean there isn’t damage. The cancer risk is real. The neuropathy risk is ...
  21. Feeneyja
    My daughter was SIBO positive two years ago. Flagyl was first prescribed but she had a bad reaction to it so then the Xfaxin was approved. So you may want to try Flagyl first. Also, we were not given any dietary advice or what to do to keep the SIBO gone, so she had a recurrence early this year. Insurance wouldn’t approve going back to the same pediatric G...
  22. Feeneyja
    There is nothing in this that looks at extra intestinal symptoms. And frankly, when I’m glutened, I suffer the consequences for weeks. AND I’m more sensitive to lots of foods. AND I did my gluten challenge with vital wheat gluten because I knew the GI doc was going to try to pin it on the FODMAPS. What about folks like us?? Since there is no test to ...
  23. Feeneyja
    This is actually an interesting and complex topic. It it depends a bit on your diagnosis. If you have celiac disease or NCGS, your body recognizes it for what it is and has the immune system response based on your diagnosis. But also, when exposed to gluten, your body produces zonulin, the protein that regulates the tight junctions, allowing gluten and...
  24. Feeneyja
    It’s amazing the bad habits we realize we have after needing to avoid gluten in highly contaminated places. I have been glutened at Panera even when I didn’t eat anything. But I have a bad habit of putting my hands by my mouth/lips when I’m thinking. I never noticed it before now. I meet at Panera with a book group. When I bring my own wipes and clean...
  25. Feeneyja
    I did a 4 week gluten challenge back in May and would not recommend it to anyone. It was hell. I was negative anyway. It took me months to feel better. My daughter also has gluten intolerance (also gluten challenge and negative afterwards). It affects her GI and nervous system. Some scary symptoms. But she also tested positive for SIBO. You can either...
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