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Feeneyja

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Feeneyja last won the day on July 7 2018

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  1. 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, it would be worth it to know if it actually is celiac, but a gluten challenge isn’t worth it...just too damaging. So, since you are early on in this saga, you might want to pursue celiac testing. But, even if celiac testing is negati
  2. 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. Meat is turned into glucose in the absence of glucose. So you may be eating too much meat (a common approach to Paleo is very meat heavy). There are also ketone supplements you can take to help push you into ketosis. Finally, h
  3. 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 haven’t tested it. We eat lots of high histamine foods and never had a problem (I make water kefir and sauerkraut, we eat smoked salmon and sardines, avocados, bacon, bananas). I’m trying to wrap my brain around what this might mean.
  4. 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. 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. 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 biopsy would show anything. I am still hoping if folks with DH could describe what their first outbreak was like. Is it always the big liquid filled rash? Is there a typical early rash that is less obvious but still super itchy? I’
  7. 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 up through the day-crazy itchy!. Her head has pretty much stayed itchy. We are on day 4 of this. It seems to be working its way across her body. I’m curious what others experienced as a FIRST rash? Disclaimer: She is not diagnos
  8. 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, Dr. Volta) have recently criticized the overly narrow approach to diagnosing celiac disease (only looking at ttg2, for example). In fact I recently saw a talk given by Dr. Fasano where he specifically mentions antibodies to gluten and their u
  9. 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 if you can’t confirm that they are causing the problems you are experiencing. That is pretty much the problem with these tests being sold by these companies. They promise you clarity that just doesn’t come with the results. But if you d
  10. 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 (this is according to my daughter’s GI doc at U of C). In research labs, however, these tests are being employed (particularly in Europe) because it is suspected that the antibodies to gluten cross react with our own tissue and are a possible
  11. Have your thyroid checked...thoroughly. These are also symptoms of Hashimoto’s and it is common with celiac disease.
  12. 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. 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. It is a super fine powder that gets everywhere. I when I did my challenge I measured it out and drank it mixed in water. I always did this outside with disposable cups and spoons and washed my hands well outside. My daughter is also very
  14. 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 nutrition and lifestyle for proper functioning. There are foods that we can be sensitive to that we can add back once the gut has healed and immune system is not so active. Check out the website for The Paleo Mom for the science and rationale b
  15. 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 oral lichen planus that found relief on the Autoimmune Protocol diet (AIP). It is restrictive, but it helps you identify food intolerances/triggers to help with healing. Something to think about.
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