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Corinne D.

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

Everything posted by Corinne D.

  1. Corinne D.
    Hi Suzy, yes, this is one of the celiac tests. This one is definitely negative. Have they also done other tests for celiac, like tissue transglutaminase IGG, EMA and DGP? You cannot rule out celiac disease without actually having run the full panel.
  2. Corinne D.
    Many thanks for all this, Sue, and please extend my thanks to your relatives. The thing is that I have already tried these supplements except sodium butyrate and reacted really badly. They were other brands, as I live in France. The Betaine HCL was NOW brand. I may give them another go in case anything has changed. But I would definitely not start with...
  3. Corinne D.
    Thank you so much for all this info, Sue. I had negative PCR tests (bacterial DNA search) on duodenal biopsies. Also, on a blood immunophenotyping my NK CD57 lymphocytes were in the normal range, not depressed at all. Although I react badly to antibiotics, steroids cause me no issues whatsoever, if anything they may actually help.
  4. Corinne D.
    Hi Sue, thanks a lot for your reply. My tests were negative for Spirochetes and any other infection. I've been wondering if they could possibly have missed Borrelia or another intracellular pathogen that may be colonizing those PAS+ macrophages - that's what Whipple's bacteria does. But I am reluctant to do a long-term empirical trial of the antibiotic, as...
  5. Corinne D.
    You could try mindfulness meditation. Look it up, it is very easy to do by anyone at all in almost any circumstances, even in a car. You can start with guided meditations and do it at home when you're relaxed until you get the hang of it. Before you know it, you'll be doing mindful driving with no guidance and it will be easier to steer your thoughts away...
  6. Corinne D.
    Hello Ariadne, a bit off your topic, but related to the discussion. Among the fatty fish, mackerel, herring and sardines are incredibly good sources of B12. E.g. 100 grams of mackerel gives you 791% of the RDA, 100g of herring 547%. If you have two servings of these fishes a week, you don't need to take B12 supplements. Also, in case you also eat other seafood...
  7. Corinne D.
    Thank you for your advice, NNowak. I have consulted a few local functional medicine practitioners, but they were unable to help me, mostly because I could not tolerate any of the classic supplements they recommended. They did not really know what I had despite running some tests and frankly my doctors did a lot more in-depth tests, including for nutritional...
  8. Corinne D.
    Ennis, thanks for replying. It is rather unlikely that I get any gluten exposures. My home is gluten free. I only eat fresh fish and fresh beef, which I cook myself with only unrefined sea salt (no additives). My cosmetics are gluten free. I do not lick stamps or envelopes and stay well away from bakeries and pizza places
  9. Corinne D.
    Thanks for your reply, Fenrir. No, I haven't been seen by a neurologist, that's an interesting thought. So far I have seen many gastroenterologists and internists specialized in infectiology, immunology, mast-cell disorders, hematology and cancer, but no neurologists. I have never had any neurological symptoms until recently. Nor anxiety nor other psychological...
  10. Corinne D.
    An update to this post. I passed an upper and lower endoscopy in January. All clear in the colon. There is very good news regarding my duodenum. Apparently the ulcerations I had have mostly healed, only one is left. Microscopically, those strange PAS+ macrophages are significantly fewer too. My doctors' conclusion is that Entocort works. They want me to continue...
  11. Corinne D.
    I don't know if this is valid for the US. In France, if a place is gluten friendly, it means that it does not use gluten in specified menu items, but cross-contamination is possible. If it is specialized in gluten free, it means it does not use gluten at all.
  12. Corinne D.
    It is similar in other European countries and the word "gluten" is much the same everywhere. Plus in many countries in Europe people can have very decent levels of English, especially in hospitality services.
  13. Corinne D.
    For me, weight gain was proportional with the healing of the villi. I actually lost some weight when I first went gluten-free. From my understanding, that was just inflammation weight - water stored in tissues. As Fenrir was saying, in my first year gluten-free I had to get up to 25% more calories than I would technically have needed just to maintain a low...
  14. Corinne D.
    For those of you who have other food intolerances in addition to gluten: What are your symptoms when you - accidentally or willingly - have one of the foods you're intolerant to? Are they the same symptoms you get when glutened? Do they depend on how much you've had? How long after eating that food do symptoms develop? Is it the same length of time as with...
  15. Corinne D.
    I am on a much more restrictive diet than just "plain" gluten-free, because I have intolerances to most foods. Long story, but the only foods I can currently eat are fish and beef. Ironically, I love food and cooking. Apparently, I am quite a good cook and prepare (what I'm told are) delicious gluten-free dishes for my partner. It's weird not to be able...
  16. Corinne D.
    Glad to hear you're doing better! It's also really good that you're going to see another GI doctor for your ongoing issues. Do keep us posted with your progress and any test results. Best of luck!
  17. Corinne D.
    Hello there! Sounds like you've reached bottom. Now the only way is up! Yes, things will improve if you stay strictly gluten free and you should not be afraid to eat. On the contrary, your body is most likely screaming for nutrient-dense foods so that it can heal! For now, it would help if you stuck to whole foods that are easy to digest. Soups...
  18. Corinne D.
    I hope you manage to get that report, it may answer a few questions. Perhaps you could consult with another GI if this one is not exactly helpful. You were saying you got a referral to another institution, isn't that right? Your symptoms may be explained by the findings. But are you sure the findings are explained solely by nutritional deficiencies and...
  19. Corinne D.
    I am in a somewhat similar situation, in the sense that I have ulcerations in my duodenum of unknown cause, with celiac in remission. However, I have none of your other symptoms, findings or systemic inflammation signs. My symptoms are strictly digestive. I do have some degree of malabsorption and an extremely limited diet - all I can eat at the moment is...
  20. Corinne D.
    Among cosmetic ingredients very likely to contain gluten there's also Hordeum vulgare, i.e. barley.
  21. Corinne D.
    A bone broth fast sounds like a good idea! Just be careful when you decide to reintroduce solids, to try each food in isolation and monitor reactions. Have you tried veal instead of beef? The meat is both leaner and more tender, so maybe you would digest it easier. Another idea would be to try to make some liver pâté - chicken, veal or pork would work w...
  22. Corinne D.
    Ennis, since you cannot keep down meat, I was wondering if maybe you could tolerate meat stock? The fat would be easier to skim too once it cools down and you could get some real nutrition plus all the other benefits I'm sure you are aware of. For the anti-inflammatory effects and to regulate stomach acid production, maybe you could try bone broth too? That...
  23. Corinne D.
    Hello Bshake, sorry to hear your daughter is struggling. Sometimes celiacs have additional intolerances apart from gluten. In many cases, these intolerances are temporary and resolve once healing has occurred. However, to speed healing and prevent symptoms, it is recommended to eliminate these additional foods and reintroduce them after a while, like six...
  24. Corinne D.
    Hello Aaron, Could it be that inadvertently ingesting gluten for a while has caused some other intolerance(s)? You could maybe keep a food diary if you're not doing it already and eliminate, then reintroduce the foods you eat most often, one by one, to see if you get any better. Improving your diet, going for whole, natural foods and greatly reducing...
  25. Corinne D.
    I forgot to mention that you might consider trying ginger as a natural remedy for gastritis. You can brew some tea with fresh ginger root and sip it throughout the day. It's supposed to both be soothing and restore gastric acid production, so you can digest foods properly and absorb nutrients. It's also a natural anti-inflammatory, so good to calm down an...
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