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Feeneyja

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  1. Feeneyja

    ARCHIVED POTS

    Feeneyja posted a topic in Related Issues & Disorders

    I'm wondering how many folks had POTS symptoms during their gluten consumption/challenge? My gluten challenge brought it on and now 3 weeks gluten free after the challenge and still dizzy I upped my salt and water intake and it has made a HUGE difference in the spike in my standing heart rate. Now, when I feel dizzy, I glance at my Fitbit and notice...
  2. Feeneyja
    No, I was not the one considering an iron infusion. My hemoglobin is 12.7. When I was still feeling tired and dizzy last week I decided to just take iron supplements and see. I did feel better each day. But iron can be dangerous (thank you cyclinglady for reminding me) and I just need to be patient. A lot was going on in my mouth during my gluten challenge...
  3. Feeneyja
    This is probably the last update on this topic since it's really post testing. I saw my GP. He doesn't test for ferritin, never giving iron for low ferritin because too much iron is not good. He stated quite firmly that I am NOT to consume gluten ever again, no matter what the tests showed. So good to hear that he's not sending me off for counseling...
  4. Feeneyja
    Dr. Fasano talks about the diet in his book. It was initially for those who were on the gluten-free diet and still had higher tTG or were still symptomatic, but I have seen it recommended now for the newly diagnosed.
  5. Feeneyja
    SIBO (small intestine bacterial overgrowth) needs to be ruled out. The following paper has a ton of great information. Basically, about 50% of folks with IBS actually have SIBO causing their symptoms. It is diagnosed with a breath test. Treatment with antibiotics (either standard or herbal) is necessary PLUS dietary adjustments. Of those treated for SIBO...
  6. Feeneyja
    Non Celiac Gluten/Wheat Sensitivity also causes cell damage and immune response. It's just not autoimmune (as far as we know). This is research from 2016, so very recent and not all docs are up on it. But it can still be gluten (or other parts of wheat) even if you are not celiac positive. And I don't have a stat for it, but there are certainly people...
  7. Feeneyja
    I know this is an old post, but your list of food intolerances just hit me, Ennis. Have you been checked for alpha gal allergy? It results from a tick bite (lone star tick) and causes a delayed (like, several hours later) IgE reaction to mammalian meats and milk. It is a reaction to the sugar alpha gal found in mammals. The sugar binds to a fat during digestion...
  8. Feeneyja
    I hear you cyclinglady. I'll hold off until I see the doctor next week.
  9. Feeneyja
    Two and a half weeks gluten free now post challenge. I was still dizzy and fatigued so I started taking an OTC iron supplement (65mg) and after about 3 days felt better than I have in over a month. The dizziness was mostly gone and I had way more energy. I wanted my GP to test my ferritin but he only did a CBC. My hemoglobin was 12.7, so not anemia (but...
  10. Feeneyja
    This is completely anecdotal, but I ran into the story of a woman whose daughter didn't have a firm diagnosis and then, like your child, appeared to become asymptomatic. At that point they met with the doctor and started the testing process. She ate as much gluten as she wanted until she had symptoms. It took 4 months. she suddenly presented with diarrhea...
  11. Feeneyja
    Oh, and as to your other question, you have this reaction because you have a gluten problem. My other kids and husband can be gluten free with us for months and eat gluten at someone else's home with no problem. Not me or my daughter who also is gluten intolerant. Is it autoimmune in nature (celiac disease) or is it a sensitivity (which is also immune...
  12. Feeneyja
    Yes, it is 1 slice of bread per day for 12 weeks per the University of Chicago celiac center. But other celiac centers call for 3 slices of bread. Unfortunately, it is really unknown just how much you need to consume and for how long to guarantee the damage will show. Attached (if I got it to work correctly) is the steps towards diagnosis as currently...
  13. Feeneyja
    Also, have you been tested for H. Pylori infection? I think I have seen that many ulcers can be attributed to that. It is also diagnosed with a breath test. Hang in there. Many people have been in your shoes. I wish it were easier.
  14. Feeneyja
    Another thing to investigate is SIBO (small intestine bacterial overgrowth). It can cause all of these symptoms. There is a breath test to check for it which any GI doctor should know about, although you have a better chance of knowledge at a teaching hospital. There's a lot of new research in this area. Here is more information: Open Original...
  15. Feeneyja
    This is an interesting read. It appears as if inflammation may CAUSE vitamin d deficiency (the opposite used to be the standard thought). Open Original Shared Link It certainly makes sense of the low vitamin d seen in association with gluten intolerance. Celiac or NCGS, there is still a systemic inflammatory response. I image it becomes a domino...
  16. Feeneyja
    Sorry this is happening! My sister has type1 diabetes and had a similar problem. It was optic neuritis. I think she had a lot of pain involved also. The doctor was concerned that it was an additional autoimmune disease. It turned out to be the results of chronic super low vitamin D. It resolved on daily high vitamin d supplementation. You should definitely...
  17. Feeneyja
    I believe acidic foods can cause them, so the lemon juice could be the culprit. I get them if I eat a lot of tomatoes or drink a lot of coffee (again, the acids) or if I am sick. And definitely stress/illness. Many autoimmune diseases come with these ulcers and it is thought that it is a result of the inflammation. My gluten challenge brought on a mouth...
  18. Feeneyja
    I am Catholic and my daughter, who is NCGS, DOES have problems with the low gluten host (it's either the host or the way it is handled. There is no way to really know). Her symptoms are primarily neurological. I provided the following link to our priest with details about her reaction (she cannot walk, has balance issues, numbness of arms and legs). Open...
  19. Feeneyja
    Oh no! I'm so sorry about what you are going through Ennis! I have wondered what low doses of gluten over time would do. Especially if one is more sensitive. Stay hydrated and rest. And get rid of that stuff! I'm wondering if my dizziness was from glutening myself. It was getting better but then it surged again twice. The first time was when...
  20. Feeneyja
    It's mostly the dizziness. I expected it to be gone by now. I really thought it would be related to anemia. But I guess not. It's better than before, but still disconcerting and makes me uncomfortable driving sometimes. I guess I should just give it more time. It's probably just gluten on the brain and it takes time.
  21. Feeneyja
    My numbers are right at the lower border of in range. I don't know if that's significant. Hemoglobin 12.7. When I had surgery a year ago it was 10.3 afterwards. I have heard of testing ferritin. Does low ferritin but normal CBC indicate anemia? I'm also wondering how quickly a CBC rebounds versus low ferritin if you have compromised iron absorption...
  22. Feeneyja
    I was gluten free four 3 years because of my daughter, not linking a long list of health issues my whole life to gluten until recently. I did the gluten challenge for only 4 weeks. No diagnosis (negative endoscopy, no blood work) but terrible symptoms, so that's it for me. Some of the syptoms got somewhat more tolerable (not really better), others got worse...
  23. Feeneyja
    I'm now in my second week gluten free after my negative endoscopy. Only 4 week challenge. One of the symptoms that is persisted, although somewhat better, is dizziness. I'm still having C, but less mucus. I'm assuming that will get better over time. But the dizziness confuses me. During my challenge I definitely experienced symptoms of anemia. In...
  24. Feeneyja
    Also be aware that you can have more than one condition simultaneously. Many folks with gluten intolerance (celiac or NCGS) also have SIBO and/or Fodmap intolerance. My daughter was diagnosed with SIBO. She was negative for celiac disease but even when SIBO-free reacts to gluten (some GI, but primarily neurological symptoms). Unfortunately, it's not always...
  25. Feeneyja
    Darn. That's a bit much for me (even though I do have a big family). I guess I just need to keep going with the small batches.
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