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mamafish

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Latest Celiac Disease News & Research:

Everything posted by mamafish

  1. mamafish
    None I know of that are really reliable (there is some stool testing for fat content that can be done, but we found that really hit or miss - someone else here might have a better idea about possible tests). My 10yo's poop has started floating again, even on the fat digestion enzymes, which is one reason we've just gone gluten-free even with negative celiac...
  2. mamafish
    We've had all of those (I have one kiddo on the spectrum, one NT). Definitely all possible food intolerance symptoms. Gluten's the most likely culprit, so I'd try taking that out first and watching the symptoms - but know that if they don't get better, gluten might still be a problem, just not the only one (the other biggies for intolerance are dairy, corn...
  3. mamafish
    It's been a while since we were last gluten-free, but I used gluten-free oats buzzed in the blender for meatballs and stuff where I just needed the absorbency. For things like gluten-free homemade chicken nuggets, where crunch matters, I crushed up potato chips.
  4. mamafish
    Have you had your thyroid antibodies checked? Joint pain can be a symptom of Hashimoto's for some, and it often co-occurs with celiac. (Also, for some people with thyroid issues, soy can aggravate things).
  5. mamafish
    Day 2 gluten-free. Snack... Little fresh mozzarella balls, rolled in olive oil and balsamic vinegar, add 1/2 a dehydrated cherry tomato (we have these ridiculously sweet orange ones), top with a bit of basil. I think fancy people use a toothpick and stuff, but I'm just eating them. So freaking good. It might end up dinner, too. (Okay, probably not because...
  6. mamafish
    I'm dealing with something similar. Very low ferritin, although not quite anemic yet. Also low vitD and a bone density scan showing osteopenia at 43. I have some thyroid antibodies as well - not enough to be Hashi's yet, but definitely not zero, either. And all celiac bloodwork was negative (but it runs in my family). At this point, I've opted to go...
  7. mamafish
    Clearing out crap is definitely a possibility. I don't drink a ton of water usually, so maybe my body is trying to tell me something . Nothing processed yet, and we eat plenty of salt regularly, so I don't think it's anything like that. It was just a curiosity, and definitely hasn't abated yet! We shall see.
  8. mamafish
    We just went gluten-free yesterday, and I've been watching my kiddos with interest. But the first thing I'm noticing is in me. I'm way thirstier than normal. Is that just a strange anomaly, or have other people noticed this? (I'm not diagnosed celiac, this is an experiment to see if it impacts all the other numbers that are apparently out of whack...
  9. mamafish
    It totally is . One that makes me feel much better to eat, and seemed optional for my kiddo. I think it really varies person to person.
  10. mamafish
    Yup, we ran everything we could. tTG was negative, but IgA was low normal for both me and my daughter. Waiting on the IgG-DGP now. Couldn't get EMA done, unfortunately. We'll be trialing gluten-free no matter what the tests say, but I wanted to run them first where we could.
  11. mamafish
    I'm 43. I'll race you to the weights .
  12. mamafish
    You're biopsy-confirmed celiac and she's got overwhelmingly positive antibodies? I'd take that as pretty conclusive. The good news is, if you can get this autoimmune disease quieted, maybe she *won't* get some of those nasty things she carries genes for (we have that problem in my family too). Gluten-free isn't easy, but I'd way prefer it to a lot of...
  13. mamafish
    Sadly he's in research. I'd happily get on a plane to go see him otherwise ;-P. But he was hugely helpful in walking me through how I might sort out celiac likelihood before I am sick enough to test positive. Like he said, if other things in your body are going awry, get a baseline. If going off gluten fixes them... someday that will get people an official...
  14. mamafish
    My story with grain-free/paleo... I think it *really* depends on the person. We have tried several different approaches all trying to figure out the best diet for my son. I went through a lot of them with him because I nursed him for 3 years. We've also tried some different things since then. End result, he does very well grain free, so long as he...
  15. mamafish
    Yup, from what I've read and the opinions of docs presenting at celiac/endo conferences, the blood tests have a big false negative rate for people with silent/latent/potential/early celiac. One doc explained it to me like this. It's kind of like cancer - they used to detect it at stage III/IV, when patients were already really sick/affected. Now they can...
  16. mamafish
    Yup. But the risk goes up a lot with one first- or second-degree relative with celiac, and it's looking like I will have a lot of them (and no one seems to have done studies on whether that increases risk - if anyone knows of one, I'd love a link). There are very few people in my family without at least one autoimmune disease, so I've always been very careful...
  17. mamafish
    My family is lousy with autoimmune disorders. And now I think we have celiac diagnoses sweeping through the family. I just did a family tree marking confirmed diagnoses, people already wheat or gluten-free and feeling better, and people with clear GI symptoms. The *only* people left standing amongst my 1st and 2nd degree relatives are me and my two kids...
  18. mamafish
    My son is autistic. When he was two, we went off gluten for eight months, with clear behavior improvements. Then we slowly went back on (he was reacting to tons of foods initially, and gluten was the last one we finally added back). No noticeable reaction when we added it back. Now we're finding the celiac runs rampant in my family, and I'm wondering...
  19. mamafish
    Given your kids' issues, I'd run celiac tests on them. If any of them get a diagnosis, that would probably encourage all of you on a gluten-free lifestyle .
  20. mamafish
    Wait - you've been off gluten for two months? And the blood tests were just done? I'm new to celiac stuff, but I know the testing needs to be done while you're still consuming gluten. Will wait for more experienced people to chime in!
  21. mamafish
    Definitely not conclusive. Your first two tests are the IgA-DGP (positive) and the IgG-DGP - you might find it easier to learn about them online with those names. Anyhow, Open Original Shared Link gives an example of the sensitivity and specificity of those tests, which means how likely are you to get false negative or false positive readings. For the...
  22. mamafish
    Aww, poor little dude. We're not sure we have celiac yet (waiting on test results), but we've definitely dealt with food sensitivities, some with gut reactions and some with brain reactions. It's *so* much easier for little ones to understand why they can't eat the thing that gives them the tummyache. (And probably easier for adults, too!). One idea...
  23. mamafish
    I might be saying stuff you already know , but it sounds like your son has at least partial IgA deficiency, if his total IgA was low. As someone upthread said, that will mean the standard celiac panels won't work. The test you want is the IgG-DGP - it works on people with IgA deficiency (my family's issue!), and it's the best diagnostic for celiac with...
  24. mamafish
    I'm new here, and not very knowledgeable about celiac yet. But I have a son with autism, and this "drunkenness" is not unusual behavior for kids on the spectrum who are dealing with gut overgrowth issues (please note - I'm not at all suggesting your daughter has autism, just that she might have some gut bacteria stuff going on). Certain gut bacteria produce...
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