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T.H.

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Everything posted by T.H.

  1. T.H.

    ARCHIVED Diagnosed...now What?

    T.H. replied to Bubba's Mom's topic in Doctors

    So sorry your doctor is just like so many others: not really helpful. :-( But like Skylark said: at least this illness is one where we can take care of ourselves, in many ways! Phew! Just imagine if we had to get pills from 'helpful' doctors like this! For the villi, what I've read is that if you're healing, the longest it usually takes is 2 years...
  2. T.H.
    Glad you now know what's going on, but so sorry it's so hard for you right now! I think for a lot of us it's that way for a month or two - overwhelming, a big desire to rage or cry because it just feels exhausting and impossible. I'm very sensitive to gluten, too, so I really sympathize with the separate cooking. My whole household is gluten free now...
  3. T.H.
    It's one of the frustrating things about this stupid disease sometimes - so many symptoms that it COULD be, but might not. My daughter and myself, both diagnosed - tall (and I've had this over 20 years, and started in childhood), our bad bones are our teeth, and very moody (Drama Queen is my daughter's middle name). So, yeah...could be. Good that you...
  4. T.H.
    My official allergies are: soy, dairy, potatoes, egg yolks and egg whites, chicken, some legumes, sugarcane, and coffee. I dropped them all, and since then, I get noticeably sick with all of them, no matter the source, so far. On top of that, all grains make me ill, especially corn. However, since going gluten-free, I've discovered I'm super sensitive...
  5. T.H.
    Honestly, and this is only a guess by a complete layman, here: I'd say yeah. It's possible. Do you NEED a diagnosis? Whether you are diagnosed or not, the treatment would be the same: stop eating gluten. Stop eating foods contaminated by gluten (cross-contamination). No diagnosis needed. The reason I ask is that if they don't think it's celiac...
  6. T.H.
    The only thing I have to contribute would be that you might want to aim for pepsi as opposed to coke as something to mix in. I rarely hear of someone having issues with pepsi, but there are sporadic reports of some people having reactions to coke. No idea if it's a sensitivity issue, or if perhaps pepsi has better practices when it comes to avoiding cross...
  7. T.H.
    It could be gluten, or it could be something else. Many sodas will claim to be gluten free, but they are really in a category of foods that haven't tested for gluten, but simply don't add any gluten ingredients. As such, batches can sometimes be contaminated by gluten and make you ill. Also, some celiacs start noticing reactions to other foods when...
  8. T.H.
    Okay, I feel like this might need to be asked: what were the symptoms that led to their diagnosis of Bechets? Did they ever have a test that was definitely: this is Bechets! Or was it all elimination of OTHER conditions because they couldn't figure out what else it might be? I only ask because a lot of the symptoms I'm reading about (I, too, didn't know...
  9. T.H.
    I think if I was in that situation, I would keep my daughter off of gluten until she was about 3 years old (unless you just want to keep it permanent until she's older). Three is the age that is recommended to introduce problem foods for children in families with severe food allergies, because at 3, they can usually verbalize better situations like 'my tummy...
  10. T.H.
    Oh congratulations! I know it's been so hard when you couldn't tell at all whether your body got glutened or not. Awesome that your care with the diet is paying off!
  11. T.H.
    A friend's daughter gets gut relief with aloe vera juice for the few days following getting glutened. It's slightly anti-inflammatory.
  12. T.H.
    Aw, that's too bad. We've run into the much cheaper issue, but our whole foods was a pain in the butt to find gluten-free foods at. They have a gluten free section, but then they only put SOME of their gluten free foods there. The others are hidden around the store. And sometimes, I have no freaking clue why they picked the sections they picked for things...
  13. T.H.
    I once came across an answer to this kind of question on a blog that I thought was very reasonable and addressed both the distillation and the fact that some celiacs report reacting to spirits distilled from gluten grains: The distillation process will eliminate the grain used to make the alcohol. But, the grain used to make the alcohol will, by necessity...
  14. T.H.
    Wow, that's a scary one! You know, it's things like this - the really bad reactions to gluten that are strange and unusual but potentially deadly - that make the idea of a gluten challenge to get diagnosed such a hot button for me. Potential celiacs are never told that one of the risks of a gluten challenge is that they could literally have a fatal...
  15. T.H.

    ARCHIVED Healing!

    T.H. replied to WinterSong's topic in Coping with Celiac Disease

    Oh congrats! Man that is so great to know that all this work is DOING what it's supposed to! Hope you are enjoying your good health to the fullest.
  16. T.H.
    It's amazing how many times we find out what's wrong because someone other than a doctor points us in the right direction! Wow. I'm writing this one down to remember later.
  17. T.H.
    Actually, I was thinking of the type that last for decades in the soil, like DDT. Would only even come up if there was a lot of farming in your area at one point. (Open Original Shared Link - article that mentions some of the most common ones that last for decades). And...crap, since nothing is popping up perfectly, let me just pop out random things...
  18. T.H.
    COngrats on finding out what's working for you! Wishing you luck on feeling better again!!
  19. T.H.
    The smell of fresh baked bread or cake, like at a bakery, makes me instantly gut-clenchingly nauseous. It's hard not to throw up if I can't get away fast enough. Bleh. It doesn't smell bad, but it makes me sick to smell it. It's funny, too, because I never cheated, so I never had any experience of eating that food associated with feeling sick. And the...
  20. T.H.
    Just to check - you mean that the vertigo doesn't wax and wane with eating, or that you've eliminated foods and there was no change? For me, before I went gluten free and dropped all my foods? I just had constant vertigo, pretty much. For about...I think it was 2 years or so? Maybe a little longer. Every once in a while it would go down to lower levels...
  21. T.H.
    I'm in the 'wouldn't test' category. First reason has to do with how little we know about the disease itself. A study was mentioned here on celiac.com - can't remember how many months back, but only a couple at most, I think. It was looking at people who have had a gluten challenge in terms of months. The chances of a celiac developing a completely different...
  22. T.H.
    Based on a little information on a recent study, I'd say we just can't tell on our own, although we can probably guess, based on how we feel, I'd suppose. The study was published last year (I think June?), and was looking at celiacs and how they are healing. By 5 years, a good percentage of celiacs hadn't healed - at least 1/3. But in the details within...
  23. T.H.
    So sorry this has been so hard for you! So...okay, no total solution, but, here's what I have: super sensitivity to gluten previously undiagnosed food allergies/sensitivities that cause no hives whatsoever Here's some of what I get with them that might match your issues: extreme vertigo, exhaustion, brain fog, memory and decision making problems...
  24. T.H.
    Yes and no. Water will rinse off a little bit, but not a lot. Soap and water will wash off more (but not denature, actually. To denature gluten is a pain in the butt - takes something like 600F for 15-30 minutes or so. Not something we can usually do, eh?). Scrubbing hard with soap and water will get even more, like you would scour out a pot - which you...
  25. T.H.
    Thanks for the good wishes, guys! We're on our way back now from DC - maybe 2 more days of traveling, now. Phew! Nearly back to safe food! Lemmee see if I can answer everybody's comments. :-) Looks like our kids are just about the same age. :-) Mine are 9 and 13 now. With the heat and constant walking, the kids definitely had some...
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