Feeneyja
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How many times did you screw up in the beginning?
Feeneyja replied to Brogrammer's topic in Coping with Celiac Disease
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... -
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...
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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...
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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.
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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.
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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...
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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...
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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, ...
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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...
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Jmun5 reacted to a post in a topic:
Basically celiac, but not quite
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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 (...
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Have your thyroid checked...thoroughly. These are also symptoms of Hashimoto’s and it is common with celiac disease.
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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.
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Gluten Challenge- Vital Wheat Gluten
Feeneyja replied to CGorman's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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. ... -
Question for those avoiding dairy (casein)?
Feeneyja replied to Jmg's topic in Food Intolerance & Leaky Gut
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... -
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...