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Feeneyja last won the day on July 7 2018

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About Feeneyja

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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 negative, it doesn’t mean gluten is not a problem. It is really annoying when someone concludes that because you are not celiac diagnosed you don’t need to be gluten free. There are plenty of people on this site that need to be just as careful as a celiac even though they are NCGS (non celiac gluten sensitivity). With celiac disease, it is known that even small amounts of gluten can cause the immune response that damages your intestines. For some it extends to damage to the nervous system and skin. For those with NCGS, they just do not know exactly what the problem is so it’s hard to know just what damage is being done. But clearly there is damage—during my gluten challenge my teeth started to hurt and get loose, my hair was falling out, headache and dizziness made driving difficult, add that to the pain and fluctuating bowel habits and nausea. So, whether or not you pursue celiac testing, I think it is worth it the treat it as if you do have celiac disease. Because even small amounts of cross contamination can bring on symptoms. Read the New Diagnosis 101 thread. There is lots of good advice on HOW to be THAT careful. I can tell you that eating out is almost always a bad idea unless the restaurant understands cross contamination. Even a salad with seemingly nothing on it is likely in a kitchen next to croutons and the crumbs get into the other ingredients, not to mention using the same serving utensils...even a stinking salad is not safe if not prepared safely. It is difficult to avoid all gluten in the beginning. Whether or not each of these gluten exposures is THAT bad or causing terrible damage...no one can tell you for sure. With celiac disease it is more understood than NCGS. But I think worrying about how much damage you may be inflicting on yourself may be useless. Just do your best to feel better and learn for the next time. You can do this. But there is definitely a learning curve. Good luck and keep pressing on. The positive health affects are worth it. Oh, and FODMAPS. Go ahead and research it. But I for one am sick of people putting forth the Fodmap suggestion when your are not celiac diagnosed. I can eat high Fodmap foods all day long. Just not gluten. And because my daughter ‘s doctor tried to blame the Fodmaps for her and wouldn’t listen to me even when I handed her a food log demonstrating it’s not a Fodmap issue, when I did my gluten challenge I used vital wheat gluten just to show the doctor it WAS indeed gluten doing this to me. Edited to add: It took me over 6 months to fully recover from all of the symptoms I suffered from on my 4 week gluten challenge.
  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, have you looked at the gut microbiome angle? The wrong gut microbes can make you gain weight. I have seen studies discussing this and saw it first hand with my daughter. She gained a lot of weight even when I was strictly controlling what she ate (she was 9 years old). Her gluten intolerance resulted in SIBO (small intestine bacterial overgrowth), a form of gut dysbiosis. When we treated the SIBO, the weight came off. It took a low carb diet plus herbal antibiotics and supplements. So it could very well be a gut dysbiosis issue. Just some thoughts. I hear your frustration! It is definitely NOT as simple as calories in/calories out!
  3. Feeneyja

    Share early DH experiences.

    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. All of her random symptoms could definitely point to Mast Cell Activation Disorder. But could it only be when she gets glutened? Or eats certain foods like dairy? Also, do you carry an epi pen? I have seen potential anaphylaxis as a symptom I’m hoping the doctor we are seeing in May can answer these questions. But I am losing faith in the medical community. Too many appointments with little resolution. Many thanks!
  4. Feeneyja

    Share early DH experiences.

    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

    Share early DH experiences.

    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

    Share early DH experiences.

    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’m trying to decide if we should do the low iodine diet. I hate to limit more foods (eggs and fish are a big part of our diet). Oh, and I did take her for a full allergy test. No food allergies. Just dust and some pollen, but nothing really bad.
  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 diagnosed with celiac. Blood work and biopsy were negative three years ago after a 6 week gluten challenge. The challenge wasn’t technically long enough (we went gluten-free first), and the blood work was not the full panel (just tTG). She is incredibly sensitive to cross contamination with both GI and neurological symptoms so we are very careful. The recent glutenings were at events where she brought her own food. But there were TONS of crumbs everywhere and she is a kid and not good at keeping her hands away from her mouth. Anyway, I’m curious about folks with DH when they first had an outbreak. I know (think?) you have to be on gluten for even a skin biopsy, so I’m thinking there’s no way to really diagnose DH if we go to the doctor. Her negative blood work and biopsy have put us in a place where doctors immediately dismiss gluten as a problem anyway and suggest...yes, FODMAPS. Sigh. No, it’s not the FODMAPS. Thanks.
  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 usefulness in identifying people with gluten sensitivity (and stated that how ridiculous it was that they threw those tests out for the narrow use of the ttg2 test).
  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 do a survey of the research, high levels of antibodies to gluten definitely correlated to autoimmune disease. It’s just that correlation does not equal causation. It is actually pretty unique and amazing that gluten has been unequivocally been demonstrated as the cause of celiac disease. But I can tell you that when my daughter was negative for celiac disease several years ago her GI doc at U of C suggested testing for antibodies to gluten as a possible indicator that she has NCGS. But at that point it was meaningless to us since clearly she has problems with gluten and it wouldn’t give us anything more definitive in terms of diagnosis and management.
  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 precursor to auto-antibody production. That is the thinking with gluten ataxia at the moment (I have been in contact with Dr. Hadjivassilou about the topic). The only test for gluten ataxia is antibodies to gluten and resolution of symptoms on a gluten-free diet. So there is still value in the Wheat Zoomer test.
  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 gluten intolerant and her symptoms are primarily neurological. I did not want to inadvertently get her sick. I ended up only tolerating a little over a month for my challenge. Had a negative biopsy and doctor wouldn’t run blood work. When my GP finally got around to running the blood work it was over a week later an didn’t run the full panel. So it’s hard to know if my results were accurate. But it took me over 6 months to recover from it. Good luck!
  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 behind AIP. My daughter and I have been following AIP and the benefits have been amazing. Her psoriasis, joint pain, and breathing problems have gone into remission on it. My anxiety, focus, joint pain, heart palpitations, hair loss, dizziness have all gone. Her and I are also sensitive to dairy (as is another of my daughters) but we also can’t have eggs (I get anxiety and irregular heartbeat and it causes psoriasis flare for her). We will begin the reintroduction phase soon, so hopefully some foods will come back into rotation. There are lots of great AIP recipes out there you might want to check out. They are guaranteed to be dairy free and grain free. I have made some lovely homemade ice creams (like fig cranberry, mint, chocolate, lemon, cinnamon, ginger bread, vanilla, etc).
  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.