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Ranchers Wife

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

Everything posted by Ranchers Wife

  1. Ranchers Wife
    My understanding is that it is NOT impossible to have a negative genetic test, and have Celiac disease. It is not likely that someone with a negative genetic test does indeed have Celiac disease. But it is not impossible. There are some uncommon genetic markers that are not included in the current genetic tests, that indicate a possibility of Celiac...
  2. Ranchers Wife
    If you've gone through your food sources very carefully looking for gluten, or cross contamination, and come up with nothing... Look at environmental exposures. Do you have cats or dogs? Wheat or barley are pretty common ingredients in dog and cat food. I use a grain free formula for my dogs, and don't have to obsess about touching the kibble,...
  3. Ranchers Wife
    So first off, Cycling Lady's advice is spot on...don't use it, don't buy it unless it is either labeled on the bottle as gluten free, or you make a phone call with a phone number on the bottle and customer service will positively verify that the product is gluten free. If it sounds like the customer service representative is unsure about your question regarding...
  4. Ranchers Wife
    This is a hard one...because in my experience, yes, absolutely the host/hostess will feel bad. And then try to find something for you. And sometimes, pressure you to eat something that they think is ok as per your explanation...but is not ok as it will be likely cross contaminated. I just will not risk being given something prepared in someone else's...
  5. Ranchers Wife
    Regarding the broth... Almost all broth will contain some form of MSG (monosodium glutamate) which is a source of "umami" flavor, or an intensity of the taste. MSG is a neurological stimulant, and it unfortunately does not limit itself to the taste buds. It is a common migraine trigger, as well as a behavioral trigger for ADHD. You might be sensitive...
  6. Ranchers Wife
    Mmmmm, chocolate! Kareng brings up an often ignored or misunderstood point: if the doctor runs antibody tests for Celiac disease, and they are negative... and with such information the doctor tells that person that they do not have Celiac disease... it's still totally possible for that same person to test positive for Celiac antibodies in the future...
  7. Ranchers Wife
    So, hopefully you can find a doctor that knows how to deal with a Celiac diagnosis. As far as the home test goes: I don't know what is available in the UK. But as I understand it, the home test in the US is usually the tTg IgA antibody test. This test is the one used for screening, and is pretty accurate. But not at all perfect, for a few...
  8. Ranchers Wife
    Also, many Celiacs don't tolerate xanthan gum well. It can cause bloating, diarrhea, gut pain. Xanthan gum is a common ingredient in gluten free flour, and gluten free baked goods. If you are getting unintentionally exposed to gluten once a week, you need some help staying clean! The Newbie section, as suggested by EnnisTX, is a good place...
  9. Ranchers Wife
    In my opinion, it's your GP that's confused about Celiac disease and antibody testing. Your very high tTg IgA antibody levels should have had your GP sending you immediately to a gastroenterologist for an endoscopy. A slightly high tTg IgA can indicate other disease, such as Crohn's disease: https://www.ncbi.nlm.nih.gov/m/pubmed/21951113/ ...
  10. Ranchers Wife
    I would probably wait for the biopsy, and have your symptomatic six year old tested immediately. If you have other children, test them right away also, symptoms or not, as is currently the standard for first degree blood relatives of a person with Celiac disease. I would very much recommend a gluten free household. If your six year old has Celiac...
  11. Ranchers Wife
    Oh, and to be clear, "cutting back on gluten" to see if things improve can be very confusing and misleading move. If you do indeed have Celiac disease, you have to be pretty much zero tolerance, no gluten ever, no dishes or utensils touching gluten, to keep the autoimmune response at zero. In other words, just picking the croutons off a salad is not...
  12. Ranchers Wife
    So first, I definitely have bladder urgency issues that are triggered by gluten consumption. I get urgency, very bad cramps, and will have blood in the urine when it is really bad. I have been to the ER and to a urologist for the issue, and they just sort of said, sorry, we don't know what to do. At the time of medical attention, I did not know...
  13. Ranchers Wife
    Maybe it's just me... but after all that you've been through, I would confirm that: There were at least six biopsy samples from the duodenum sent to pathology And The biopsies shoe normal villous architecture according to the pathologist s magnified view Before I would agree to more medical testing with this physician. If it turns...
  14. Ranchers Wife
    Well... there are a number of people here, including myself, that never got an official diagnosis. A diagnosis would be nice, but given that a very disruptive spectrum of symptoms that have flummoxed doctors for years.... are gone or minor on a gluten free diet, I assume that I am Celiac. At the very least, it takes a Celiac standards, no cross contamination...
  15. Ranchers Wife
    Go Raise A Really Big Stink. Compare what has happened with the grilled cheese sandwich, with a patient getting the wrong drug/wrong dose of a drug, and the liability and patient harm from that. If your daughter has been diagnosed with Celiac disease, she was unequivocally caused harm by the hospital provided food. Just the same as if she...
  16. Ranchers Wife
    This is an older post, but I think the drug in question likely does not contain gluten... however the company that makes it likely cannot guarantee that it is gluten free to the 20ppm or less standard. If I were in this situation, I might get myself a NIMA tester, and figure out how to run the test on each batch of medication before I took it. Not...
  17. Ranchers Wife
    Xanthan gum...gives me gut problems and diarrhea. It gives my Celiac husband joint pain and swelling. It doesn't bother my Celiac mother. But that's the main difference between your 'before' diet and 'after' diet that I can identify. Most gluten free bread, and baked goods, contain xanthan gum. Even most of the gluten free baking mixes (at least...
  18. Ranchers Wife
    I am completely unwilling to have gluten grain containing dog food in my house. It would be way too easy to get a Celiac gluten reaction in myself or my husband (both Celiac), with handling the dog food, washing dog dishes, or even just getting doggie kisses on our hands. One dog also wheezes if he consumes barley. There...
  19. Ranchers Wife
    Yeah, sorry about the being Celiac thing. Crying in the grocery store in the first months after diagnosis is unfortunately a Real Thing for a lot of us. I don't have anemia, but gluten makes my monthly cycle go weird. Gets crazy heavy and irregular. Sorry it's been an issue to get the exact information that you want from your doctor... but glad...
  20. Ranchers Wife
    Hi there Oranges and Melons, I was thinking of you How are you doing, if you care to share?
  21. Ranchers Wife
    You only need to have one cross contamination issue once every six weeks or so in order to have your body continually have antibodies. I think between just being gluten free for a year, and living in a gluten household/ kitchen with six other people, you haven't been able to get clean enough for your gut to heal. Have you had any follow up...
  22. Ranchers Wife
    "Went to the info session (ON THE BUS! ON MY OWN! " Good Job!!! I hope you will keep us updated. It's great to hear that you have a really well informed gastroenterologist. My Celiac issues were overlooked by three different gastroenterologists. First, in my college years (1990 or so), second in 2005 and most recently in 2015 at a well res...
  23. Ranchers Wife
    Well, it's obviously up to you, how strict you want to be in order to avoid cross contamination. But why would you adopt less strict UK standards, if Celiacs in other countries have hurt themselves with cross contamination with used 'gluten sponges' and/or communal condiment jars, in which someone has swiped a piece of wheat bread with mustard and then...
  24. Ranchers Wife
    Sorry you couldn't stomach the gluten challenge. It is a total bummer that the only way to get an official Celiac diagnosis after you've gone gluten free, is with a gluten challenge. I understand that there are some GI docs that will do an endoscopy after a two week challenge, and skip the blood antibody testing, for a patient with obvious...
  25. Ranchers Wife
    My feeling is in agreement with Cycling Lady, that getting glutened from your hair products is unlikely... but not impossible. I gave away some shampoo that contained wheat protein when I began with Gluten Free at a Celiac (zero tolerance) standard. It's not hard to find hair products that are labeled gluten free, it will just maybe take a bit...
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