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saintmaybe

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

Everything posted by saintmaybe

  1. saintmaybe
    Hey guys- Made an appointment this morning with the professor. She's booked out until February unfortunately, but I guess if you want the best, you have to wait for the best. I figure this gives me time to finish my genetic testing, really update my food journal, and take some more time lapse pictures that might help make a diagnosis.
  2. saintmaybe
    The absolutely astounding lack of knowledge and coordination among practitioners in the medical community.
  3. saintmaybe
    Others will have amazing advice, I'm sure. I find stubborn west Virginia cussedness gets me through a lot of days. Patience, time, and gritting your teeth and powering through are sometimes all you've got.
  4. saintmaybe
    I was just telling someone this today, and they were incredulous. DO I think there'san evil cabal out there actively impeding celiac research? No. But there are other ways for celiac research and teaching not to progress. That study you conducted? Even though it was well-controlled and exhaustively researched? Don't have to publish it, or if we do...
  5. saintmaybe
    Well guys, I can't stand the suspense. I also live less than an hour from Beth Israel, which has a major celiac research center and an appointed dermatologist (a Harvard professor no less) who can evaluate my Dh. I'm damned lucky to be able to take advantage of resources that other cellars can't, either financially or geographically. Making my appointment...
  6. saintmaybe
    Lovegrov- rich, not trying to be rude, just asking an honest question. Because while it's not similar to yours, others have chimed in and said it DOES look like theirs. It's confusing! I think I've answered my own question, in that dh can probably only be definitively diagnosed via biopsy.
  7. saintmaybe
    So I ate kind of a lot of cool ranch doritos. I know, I know- but all the health food was getting wearing! I used to be a junk food junkie before celiac turned me into the crunchy hippie everyone already thinks I am. So anyway, turns out that though they are gluten free, cool ranch doritos are manufactured on gluteny lines. =( My joints are very angry...
  8. saintmaybe
    You have to laugh, and have a sense of humor about this- otherwise you're just gonna cry. Our bodies get beat up over years of celiac abuse! Thanks for the link! I'd seen a few of those pictures before, but never so many in one place. Enormously helpful. It must be difficult to diagnose Dh because I presume doctors are taught that rash X looks like Y...
  9. saintmaybe
    Really? Because from the above posters link, it looks like there are at least three different general clinical presentations of Dh- blistering, more of an acne type, and some really localized dark red spots over a large surface area. It also looks like it can vary from severe (holy schneickes, was I bit by a BROWN RECLUSE!?) to irritating annoying itchy red...
  10. saintmaybe

    And another one. http://t.co/3X1VP9tM

  11. saintmaybe
    Hey guys- I've had what's always been diagnosed as acne on my back and shoulderrs spreading all the way down to my butt since I was like, 10 years old. It's been unremitting, although it's less bad than it used to be. The skin of the affected area is also constantly red and pretty itchy. I always say the fastest way to my heart is via a good back scratch...
  12. saintmaybe

    Pyrrhic victory for #Occupy today. The elites are so scared, they came down with the full force of law!

  13. saintmaybe

    Banks are planning billions in bonuses again...they really don't get it. Today is the first time I've seriously thought we need a guillotine

  14. saintmaybe
    It might be the butter. I had buttered beans for dinner last night, and had a pretty immediate gluten reaction, although there was no gluten in my meal. Since my celiac set in, I've found I can't do fatty, rich, or greasy foods, regardless of gluten content. Too bad too, because I'm trying to gain weight.
  15. saintmaybe
    The "biopsy as a gold standard" is just that. How the doctors make their gold. Even if all the other symptoms line up perfectly down a checklist, you have the genes, and a family history, unscrupulous GIs will hold off until you shell out for the endoscopy. Something many of us just aren't capable of or willing to do when we otherwise know what the issue...
  16. saintmaybe

    Guys, guys I am so old. Red hot chili peppers was on the classic rock station today. Soon I'll be starting stories with "in my day..."

  17. saintmaybe
    I woke up today barely able to bend over due to sore muscles in my neck and shoulders/ lower back, and thus found it necessary to call around and find a massage appointment. This is NOT easy to do at the last minute on a Sunday, btw. However, I fell on the mercy of a nearby studio with a good rep, and they put me on their waitlist. Lo and behold, their...
  18. saintmaybe
    AB- here, with mostly Irish, Lebanese, and Eastern European ancestry. Hazel eyes, brown hair.
  19. saintmaybe

    I love living in the city in the future. I just made an 80 min massage appt on my iPhone for later today without getting out of bed.

  20. saintmaybe
    You're not broken, with or without the need to take medication. Celiac so profoundly screws up the body chemically, I'm surprised there aren't more people who need prozac in the early months of diagnosis. It SAVED me. I can't stress this enough- there is nothing, NOTHING to be ashamed of by needing antidepressants. The ideal, of course, is to live a...
  21. saintmaybe

    I have changed so much since I was reading sentinel fanfic- it's just...amazing what we bring to our own reading.

  22. saintmaybe
    It occurs to me that if you're taking a lot of bicarb (TUMS) for stomach acid, that would artificially inflate your numbers for blood CO2. Also, it can indicate muscle weakness around the diaphragm. Chronically elevated levels of CO2 *are* significant though, and you definitely should keep an eye on that number.
  23. saintmaybe
    Oh and high c protein is an indication of an inflammatory process going on. Which would be the celiac. Look for c protein levels to go down as you get the celiac under control.
  24. saintmaybe
    Your vitamin D and B levels indicate you may be oversupplementing, OR CONVERSELY, you just started supplementing, and your body is still having a difficult time taking them up. They remain in your bloodstream until processed by liver and excreted. The carbon dioxide indicates you are a smoker, live with a smoker, or work in a place with lots of smokers. I...
  25. saintmaybe

    Whoever conceived that is an evil twisted genius.

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