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rain

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Everything posted by rain

  1. rain
    I've posted a few times on the rash (exzema) that I'm struggling with so thought I'd send an update. I saw Dr. Fasano and in the 5 minutes he spent with me he told me that these rashes are not uncommon as people heal from celiac. He said he'd check me for other causes of the rash after my blood tests show that the intestines have healed. Fortunately, my acupuncture...
  2. rain
    Yes it is!! oh no... Which one should I buy? Thanks so much for telling me.
  3. rain
    I don't have any advice but feel like I should reply since I'm actively dealing with a rash that has become severe over the last year. If it is dry skin (which I know a lot about and perhaps you do to) there are straightforward ways to determine this: try a humidifier (assuming you're in cold climate now), try different moisturizers, moisturize before...
  4. rain
    Thanks for the tip on Earth Balance! I've also taken out nuts so I can't drink Almond Milk, but I'm learning to like (and I mean learning!) Rice Milk.
  5. rain
    I'm experimenting with cutting back on fructose. I've taken out fruit and cut way back on juice and honey (in my morning tea). I just ate a whole sweet potato with 2 tbs of maple syrup and I've got the tell tale buzzing/tingling/chills in my body. Is this fructose intolerance? Thanks!
  6. rain
    Ok, so I've now taken out soy. (I need to figure out how to do it since I use soy milk and butter so regularly.) Today I'm wearing a turtle neck because my neck and chest are red and raw with the rash. I'm also in a fair amount of low grade pain. I can't wait for the doc appt. I really hope this is all still celiac and not some other complication. ...
  7. rain
    I had to reply because I was diagnosed just a few months before you and I'm still struggling pretty hard. My aggravation is that my symptoms are constantly changing, it's making me nuts. So today I learned that for some people (that includes me) coffee acts on the body in a similar way as gluten. That explains a whole lot of my symptoms (shifting moods, exhaustion...
  8. rain
    So I went out to eat tonight (oh no..) and had a tofu hotpot - Do tofu skins have gluten?
  9. rain
    Thank you! I have an appt now (I can't believe it, finally) at the Center for Celiac Research so hopefully now I'll get some real help rather than flying solo. Apparently they work as a team of docs rather just a gastro or nutritionist.. I was up til 1:00 last night scratching and feeling so unbelievably uncomfortable and of course I continue to feel worn...
  10. rain
    Hi, I feel crazy - 10 months and I'm still struggling with symptoms that I don't understand. Early in the diagnosis the foggy headedness, the constant eating and never feeling satisfied, the gluten ataxia all subsided. Emotionally I was feeling more even, and anxiety was clearly fading. I feel so much better and am so grateful that it's been real easy...
  11. rain

    ARCHIVED Doctor Visit - GW Hospital

    rain replied to rain's topic in Doctors

    Thanks for all the replies - and TH thanks for sharing your experience. I suspect I'm in a similar predicament, that I have another thing going on that just needs to be identified.. IF only a doc would listen. I'm going to keep looking, after I take a break.
  12. rain

    ARCHIVED Doctor Visit - GW Hospital

    rain posted a topic in Doctors

    I need to read the postings in this forum but I have to vent first. I did this to myself -- went and saw a gastro doc without doing all the research I should have done. (Can we post doctor names?) Anyway, GW Hospital has been good for many things, but the gastro doctor did not understand celiac. He didn't ask me about gluten ataxia (I forgot to mention...
  13. rain
    this is great thread! does anyone have a gyno recommendation for the Washington DC area? I don't think I have VV, but I've got something. I haven't had sex in awhile so I don't know if that unbelievable pain is still there but based on my last pelvic exam the pain had lessened. But I still have a persistent fissure and mild yeast like itching. These...
  14. rain
    Sunscreen - I do use sunscreen but am aware of the possibility of an allergic reaction, so this time was a trial to use sunscreen and see if it would make a difference. Plus, even though the rash started on my face it has spread to areas that were not exposed to sun. I've gotten rashes on my belly from food, but all over? Is that possible? With that...
  15. rain
    Thanks! I'm going to start this diary today.
  16. rain
    I finally got a prescription for a mild steroid from my internist. Also we had some cloudy days. The rash cleared right up - in 2 days tops. The sun came back out and the rash is back, first the bumps, then the insane itching that keeps me up at night and the herpes simplex blisters (cold sores) all around my mouth and nose. Ahhhh!!!!!!!!! I'm so frustrated...
  17. rain
    I can relate! In my case, I've been on the diet for 6 months, but I've been about 113 for 15+ years and am now stuck at 118. And what bugs me is that rather than feeling like I've reached an ideal weight I feel heavy. In my case my appetite is changing so I'm still eating when I'm not hungry. But I'm not used to how little I need to eat now that food is...
  18. rain
    I'm going to keep a food diary. It's been 5 months and I'm still on the roller coaster. I've learned to appreciate that if malabsorption goes away then my food sensitivities will worsen. So I need to really identify what they are, except that I'm just awful at that sort of thing. Also (I'm griping here) I am so tired of being surprised by new symptoms...
  19. rain
    I've been finding that adding a probiotic helps a lot. I'm not sure why though.
  20. rain
  21. rain
    Me too! I'm building a lot more muscle now that I'm gluten free and it's only been 6 months. Kind of odd given how much time I've spent wanting to build muscle and it not happening. On the flip side I also gain weight now..I got so dependent on snacking to keep my energy up, and my energy levels are still changing so it's hard to sort that out. I hope that...
  22. rain
    I'm not sure if you'll see this but I'm wondering how your ride went? What did you eat? I'm going to start riding longer distances in a few weeks but what to eat remains a real puzzle. (I can't eat dairy, tree nuts, food preservatives).
  23. rain
    I'm on the hunt for information related to how healing works, largely because the intense anxiety I have lived with for many, many years is slowly and steadily lessening as I stay off gluten. I'd really like to understand this better - I feel very different than before and it's a bit daunting. I suspect it's just that it's odd to me to not feel anxious. ...
  24. rain
    Thanks for your ideas. I have looked at the possibility of other foods but maybe not enough? I have cut out soy. I have taken dairy out and when that made no difference I put yoghurt in for the probiotic. I can take it out but I don't expect that to be the problem. I have reduced corn. I had a dermatologist check it to see if it was DH - it's not. And the...
  25. rain
    I have a rash over much of my body that is not dermatitis herpetiformus. At first I thought it was exema from sun exposure (which I get) but this is behaving very differently. I have had it for 4 months. The skin burns and itches intensely. It is disrupting my sleep and limiting my movement. Cortisone cream does not help. I've been trying natural alternatives...
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