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T.H.

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Latest Celiac Disease News & Research:

Everything posted by T.H.

  1. T.H.
    Wouldn't surprise me. Although with more and more celiacs not healing after years on the diet, I would not be surprised if we're just the lucky ones who don't heal AND react noticeably enough that we can actually tell what to avoid. How much more difficult would it be to react to low levels of gluten and NOT have a noticeable reaction?
  2. T.H.
    For soy sauce - there is gluten-free soy sauce or something called coconut aminos. gluten-free soy sauce is really just the traditional soy sauce that existed before wheat was used. It's a bit stronger than soy sauce we use now, so you want to use a little less, usually. Coconut aminos are a little sweeter and a little less salty, so you have to adjust that...
  3. T.H.
    Nope. I don't think they know enough about the disease, IMHO, for this to be safe. I get neurological problems when I ingest gluten. There are few studies that have looked at this, and one of them has found that for those of us with this issue, our bodies can actually make another set of antibodies once gluten hits our bloodstream, and these antibodies attack...
  4. T.H.
    I have not, however, my GI has mentioned that celiacs' absorption of everything gets, well, pretty wacked when they eat gluten. From what I understand, we can stop absorbing some parts of our medication, but at the same time, we may also absorb MORE of some parts of the medication, too. I think that latter had to do with leaky gut issues. Basically, he...
  5. T.H.
    I bring my own food, and a pan to cook it in or a dish to microwave it in. One thing that helped a relative to understand was to make a comparison to raw meat and germs. We all hear about not touching raw meat and then touching our food, right? Because just a few germs from raw meat can make us very ill. A few molecules of peanut can make severely...
  6. T.H.
    Will she eat quinoa or amaranth? If I remember right, because these two were seeds, they are lower in carbs than the regular gluten-free grains. Might be more usable in a recipe, perhaps?
  7. T.H.
    I got the headache issue as well. For me, it turned out to be undiagnosed food allergies - I don't get hives, I get things like headaches. Weird stuff, but can also happen to a number of celiacs. I'd suggest keeping a food journal if you aren't already. Keep track of what's eaten, at what time, and when the symptoms are happening, and see if a connection...
  8. T.H.
    I honestly don't know if this would apply, but I know that for many of us, we get more sensitive to gluten after we've been gluten free for a while. Perhaps that might account for the higher blood levels? Not sure, honestly. Have they looked at anything else that might affect these blood levels? Also...are you eating any beans, nuts, seeds...
  9. T.H.
    My thoughts on the matter are that we cannot make our kids feel like they are the same as everyone else. We can't, because they aren't. But it's not a big deal, really. Some people have glasses, some have inhalers, some have pale skin that needs more sunscreen, and some have to eat special foods. And yeah, people are going to make fun of that sometimes, just...
  10. T.H.
    My understanding is that it could be days to a few months to recover and tolerate milk again if you've been getting some gluten cc. Or could be developing issues with milk no matter what. :-( If after a few months dairy is still an issue, I'd guess that you have a dairy problem, or you are still getting gluten cc somewhere. Unfortunately, if you are in...
  11. T.H.
    I don't know if this would help, but it sometimes works for us if we make the cooking an experiment. We're out of luck in the processed food department and so are pretty much making almost everything except the oil and salt, at this point. And I'm not that great a cook, so it's...well...not that exciting of a diet, most days, LOL. But one thing we've done...
  12. T.H.
    I'm thinking the IV's are most likely, yeah. Although I imagine in an emergency where I can't speak for myself, an IV is most likely anyway, ya know? So far, I've been wearing a bracelet now for about a year and a half. I tried to have one I'd take on and off, but I just forget to put it back on, so now it's on 24/7. Got a tan line at this point, LOL...
  13. T.H.
    Have you ever looked at annatto as a problem for you? Coffeemate has the food dye annatto, and it has been known to cause D and other gut issues. There's a good website on what products contain it, as it doesn't have to be labeled specifically and can just go by 'dye.' Open Original Shared Link Not that it might not have been gluten, if course...
  14. T.H.
    *raises hand* I had no gut symptoms (that I was aware of) and after diagnosis, I still really don't get gut symptoms from celiac disease aside from some mild constipation if I get gluten contamination many days in a row. Here is what I've read, although it's been a while and I never recorded down where I read this, so it's probably worth checking out...
  15. T.H.
    Sadly, no. It's a voluntary label. Nuts and dried fruits are also products that often should have that label on the package (if it were required) and don't.
  16. T.H.
    Is there any way to get the blood tests that were done, so you can look at them yourself? A lot of people here have had a lot of practice interpreting the results and might be able to help. And just to double check: when you went gluten free, how did you go about the diet? I was wondering if, on your gluten free diet, you avoided gluten as an ingredient...
  17. T.H.
    Just wanted to share a great doctor experience from yesterday, 'cause we all need hope, eh? I had my yearly physical yesterday with my GP, who is just a regular doctor, not alternative medicine or specialist or anything. But I haven't been to see him since I figured out that I react to lower gluten levels than the average celiac. I keep thinking I have...
  18. T.H.
    And actually, the data is already going to be skewed before they even START the trials, when you think about it. Because in this study - and in every one I've ever found that is looking at safe gluten levels - the researchers try to get participants who have healed on their gluten free diet. Except we all know that their gluten free diets aren't ZERO...
  19. T.H.
    Ha, knew I was going to screw it up, LOL. ppm of wheat flour vs., oh, I don't know...the actual cake that was asked about?
  20. T.H.
    Crossing fingers for you that it IS celiac disease, too! One thing you may want to look up re: the chest pain: Costrochondritis ( Open Original Shared Link ) The important things to know about it is this: It's "an inflammation of the cartilage that connects a rib to the breastbone (sternum)... Pain caused by costochondritis may mimic that...
  21. T.H.
    Okay...quick math done late at night, so I'm probably going to screw this up, but I'll try it anyway. :-) Just looking at the flour, and taking some info. from the web here.... 1 1/2 cups of self-rising flour weighs about 0.19 kg. Flour is not solid gluten, and the percentage can range from around 7.5%-14% of the flour being actual gluten, depending...
  22. T.H.
    My own experience had some similarities - not necessarily the same, obviously, because this sort of thing can be from so many things, but for what it's worth... I turned out to have: - a few food allergies - a hypersensitivity to gluten - problems with a few pesticides I was keeping a food journal too, but it only found a few connections. I was...
  23. T.H.
    I had memory issues where I'd be driving and forget where I was or where I was supposed to be going, couldn't find words, etc... I think the one thing that bothers me the most is that it was like my brain wasn't making memories. I've had this for over 20 years, and I just remember tiny pieces of it. I barely remember any of my children's infancy (although...
  24. T.H.
    I like this site's symptom list: Open Original Shared Link Basically, mom needs to learn that no 'discernable' symptoms doesn't mean no damage. And on the more dramatic side, long term undiagnosed celiac disease can set a person up for permanently debilitating damage or death. Celiac disease means we're nutrient deficient. That means every system starts...
  25. T.H.
    I'd answer: you can't trust those products completely, no. Some are probably just fine, but since the diet isn't working and you are trying to track down what the issue is, I'd call them all to do some checking. First (and wow is this frustrating), the label 'also processed in a facility that processes wheat' is a voluntary label. If you see it, it's a...
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