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Galixie

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Everything posted by Galixie

  1. Galixie
    I have not had an iron infusion (the IV version of iron), but I have had an iron injection and I am happy to describe that experience if it will be helpful. To start off I will point out that I had a form of anemia that doesn't respond to oral supplementation and that it took me about three years to convince a doctor to actually bother giving me an iron...
  2. Galixie
    Yes, it's very true that anemias can co-exist. And, worse yet, if you have a microcytic anemia (like iron deficiency) at the same time as you have a macrocytic anemia (like B12 or folate deficiency) it can actually cause blood tests to show a false normal results. I had never even heard of false normal test results until I was pretty much in that situation...
  3. Galixie
    Do you know which form of B12 the injections are? Cyanocobalamin is the form most often used in the US and is usually given once a month. Hydroxocobalamin is the form more commonly used in parts of Europe. Generally speaking, cyano works more quickly but is not retained as well in the body as hydroxo. Methylcobalamin is the newest form of B12 to be developed...
  4. Galixie
    This is something I'm mildly curious about because I was just reading a thread about dizziness. I wasn't sure where to post this question. I'm not even sure exactly how to word this question. I know celiac can cause iron deficiency because iron is just not getting absorbed. But I've also heard a few people mention having low iron that they can't seem...
  5. Galixie
    I just bought a cookbook that has a rice milk mayonnaise recipe in it. It's actually this recipe: Open Original Shared Link I haven't had a chance to try to make it yet, but it does happen to be gluten, dairy, egg, and soy free. I thought you might want to give it a try. I hope the therapy works. Good luck!
  6. Galixie
    To jump tracks a bit, You have mentioned that you have both chronic gastritis and borderline low B12. Have you been tested for Pernicious Anemia? There are myriad symptoms related to B12 deficiency and you don't have to become anemic before experiencing them. This is just something to consider. Do you have any relatives who have had B12 deficiency or Pernicious...
  7. Galixie
    One thing I've learned is to request print outs of all of the lab results and make sure they include the reference ranges. That way you can see exactly what was tested as well as what the actual results are (not just a doctor saying all is normal). Back in 2012, after a particularly bad episode of anemia-like symptoms (I couldn't get out of bed for three...
  8. Galixie
    I will try to do better to avoid cross contamination. I'm struggling to accept gluten as the problem. This forum is the only place where I hear the message that I should not ignore the one positive test result. That message is in direct contradiction to all the instances of being told that I don't have celiac because the ttg results keep coming back negative...
  9. Galixie
    Biopsies are considered the gold standard for diagnosis. However, as nvsmom points out, biopsies could be taken from multiple locations and still miss the damaged section and thus give a negative result. An endoscopy is an invasive procedure and I imagine it would seem especially scary to a four year old. On the one hand, an endoscopy could definitively...
  10. Galixie
    I'm somewhat resigned to the fact that I won't ever get conclusive lab results. In my mind this means that I might have NCGS due to the one positive Iga result, but not actual celiac disease due to the three or four negative ttg and biopsy results I've had so far. I'm willing to admit that mindset might be the first place I'm making an error, but I have...
  11. Galixie

    ARCHIVED Lost

    Galixie replied to beth01's topic in Coping with Celiac Disease

    There is a really large gray area with vitamin B12 where symptoms of deficiency can occur even though the lab result says normal. A typical reference range for serum B12 is 200-1000. Symptoms, which can include fatigue, dizzy spells, and fainting (as well as others), can occur in levels below 400. If the problem is not with your thyroid, you might check into...
  12. Galixie
    I don't know that my experience will be that helpful since I didn't know I had an intolerance to dairy for most of my life and I imagine that the noticeable symptoms differ in different age groups. But the symptoms that I now recognize to be from dairy intolerance were; sinus problems (usually congestion), fatigue (not debilitating, but I had a noticeable...
  13. Galixie
    I struggle with this one as well because I don't have time or energy to cook anything in the morning either. My usual breakfast is nut butter on gluten free bread. Nutella has milk in it, but Justin's Chocolate Hazelnut Butter is similar and dairy free. (Open Original Shared Link) Otherwise peanut butter is an option if you don't like your breakfast to be...
  14. Galixie
    If you find a good forum for dairy intolerance, please post a link to it. I would be interested in that also! I have one friend who has lactose intolerance and does well by taking something before eating dairy. It's a pill of some kind. I don't know what it is called though.
  15. Galixie
    I had more blood work done. Unfortunately the only celiac tests run were the TTIgA and TTIgG tests (which still confirm that I don't have celiac). I don't think I will ever manage to get the gliadin tests rerun. I don't think I'm even going to try. I do plan to go gluten free again and see if it makes any difference with my remaining gut issues. Going dairy...
  16. Galixie
    I have now had it confirmed that I have a dairy intolerance as opposed to a true dairy allergy. After having hives for a week (from an unrelated cause), I finally saw an allergist who did some skin-prick tests on me. While some of the food test areas did appear red, none of them developed a weal of 3mm or more. It was pointed out to me that I have very sensitive...
  17. Galixie
    The blood was drawn at her office and sent to the lab. We talked about which tests would be run before she drew the blood, so both of us were perplexed at the lack of results. I've asked her to check with the lab to see what exactly happened. It turns out that my other tests revealed that I'm currently fighting off a virus and so the naturopath is less...
  18. Galixie
    Update (sort of): I'm not really sure what happened but I didn't get results from a full celiac panel. Instead all I got results for was the Tissue Transglutaminase Ab IgA - which were negative (<1.2 with negative being anything less than 4). It certainly didn't answer the question I was trying to resolve. It's possible that the lab ran out of blood before...
  19. Galixie
    Thank you Gemini and Cyclinglady. I know that there is an autoimmune something going on. Trying to figure out what has been the challenge. The only way to deal with anemia of inflammation is to treat the underlying cause, so that's why I'm still searching. I agree that the problems I had after going gluten free for a month were probably related to...
  20. Galixie
    Just to update: I'm still trying to figure out the answer to my last question about whether gliadin IgA antibodies could trigger an autoimmune response. I have a good naturopath who is working with me to figure out the mystery of where my (very mild) anemia of inflammation is stemming from. I've been back on gluten for months. My original experiment only...
  21. Galixie
    It is neither lactose intolerance nor true allergy. It seems to be a sensitivity to casein and whey. The very mild reaction I seem to get after just a trace amount is only a stuffy nose. I did consume dairy for about 40 years before going off of it, so I know it wouldn't ever cause a life-threatening reaction for me. I think the only symptoms dairy generally...
  22. Galixie
    If I react subtly to trace amounts of dairy, does that mean I'd definitely have a bigger reaction to larger amounts of dairy? Or could I end up having the same subtle reaction regardless of the amount?
  23. Galixie
    The others have offered really good advice. I recently, finally, managed to go dairy free (I know it's not quite the same, but the struggle is surprisingly similar). It was my second attempt at going dairy free because the first attempted failed spectacularly. I had binged on dairy before giving it up and that made staying away from it much harder. I was...
  24. Galixie
    The symptom of your hands and feet being tingly or numb could suggest a vitamin B12 deficiency. B12 is a really difficult vitamin for the body to absorb. Anywhere in the methylation cycle something could go haywire and then you don't get the benefit of the vitamin even if you have it in your system. I've found this page which gives a good explanation of how...
  25. Galixie
    It was just the regular AGA gliadin IgA that came back positive. DGP tests weren't available at the time. All the rest of the tests, including biopsies, came back negative. I don't get the feeling that my doctor is willing to retest. She would just point out that I already tested negative. That might be why she's labeled it as IBS. I really don't know...
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