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Neshema1

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Everything posted by Neshema1

  1. Neshema1
    Omg, I'm keeping my GI doc. Will tell u mote after I rest.
  2. Neshema1
    This is what I feared when I got old. It happened when was at the best time in my life. I think gluten is likely at the root. So my GI didbt see me. I hung out resting in the main lobby of Hosp cuz I don't wanna go home.. Ok, but my cardiologist just called & said go rest. I'll tell ya abt my GI doc later. I think she's getting flushed down the toilet...
  3. Neshema1
    Wrote the story but got booted.. Too tired now. Didn't see the doc. Unbelievable! Goes to show ya worrying is a waste of energy! Now I'm just tired of dealing with docs. I have to say two on my team are awesome human beings. The ppl who wirk at this hospital (my personal headquarters) are so kind. I can't walk down a hallway without 3 ppl from wherever,...
  4. Neshema1
    Need to ask for emails to inform me of replies
  5. Neshema1
    Contd an MD in complimentary medicine did the DNA tests. My neuro believes it. My Endo believes it (and SHOUKD have picked it up with all my bone & Endo issues) & even mayo asked me if I ever was told abt celiac & o just rolled my I eyes. "I dobt have celiac!!!" I said for the hundredth time! Well, seems I do. And oh, btw, I have nails for first...
  6. Neshema1
    Ok. Up all night. Have dreaded gi appt in few hrs. Like my dr but gotta tell her another dr did my DNA tests & pos for celiac. I was dxd shortly after a year old. gluten-free 4 years. Then found pancreatic digestive enzyme (trypsin) deficiency. Now know that can be result of celiac disease. I have every symptom imaginable and even neuro damage (and Im...
  7. Neshema1
    Ok, it's way expensive to start but after the initial cost, I cannot recommend dreamcatchers hair extensions enough! My hair was so dry from all my deficiencies, & I splurged (when I could affORD it, & got them). They stay inyour hair like your own normal hair & u can wash it less often & they always look great. U never have to color them...
  8. Neshema1
    Dxd w/ celiac at abt 13 mos, juvenile RA at age 9, later sjogrens syndrome & raynauds (related to RA), & then neuropathy, & then u name it.. Now dysautonomia (neurological). BUT, was of gluten-free diet most of my life after docs decided at around age 4 it was pancreatic enzyme deficiency (trypsin) which now know can happen secondary to celiac...
  9. Neshema1
    No joke abt vit D. Mine is untraceable without 5,000 u daily d3. Rx d2 didn't work at 100,000 u week. It got so bad I had parathyroid (not thyroid) disease. Hyperparathyroid & low D is called the "moans & groans" disease for good reason! It feels like hypothyroid. Mine was better finally last we checked, but it's been constant battle & gave me...
  10. Neshema1
    I don't think ADA covers ppl on long term disability leave (after using up FMLA), right, even for tenured profs. I think they can fire u for being sick indefinitely. As sky knows, I had dx of celiac since age 13 mos, then docs took me off diet thinking I didn't have it, always had malabsorption, RA, & now neuro & heart problems. I'm pretty young for...
  11. Neshema1
    On thread "hope this helps"
  12. Neshema1
    Pls read my post under darn forgot!
  13. Neshema1
    I have the same problem. Can literally sleep 3 days straight. My sleep doc says I need 12 hrs (and even then I have fatigue). I have periodic leg movements. I did not even know. I sleep at most one hour then wake up but go back to sleep & don't know. It csm be relayed to restless legs or neurological disorders. He thought I had delayed sleep phase disorder...
  14. Neshema1
    Is it normal to get worse after abt 10 days on the diet? Im suddenly worse than before. I wonder if I'm more sensitive? I accidentally took a bite (like two flakes) of the wrong cereal. Thought it was my gluten free stuff but it wasn't. But I was already worse buy wow even worse after that. Maybe I need to recheck all my meds. But still, I'm really taking...
  15. Neshema1
    I hear ya! I'm sticking to it but it's initially making me worse unless it is making me more sensitive. Had a bite (i kean two pieces!) of cereal thought was my Gluten free stuff (but it wasnt) last night & omg, today was a GI disaster!
  16. Neshema1
    Ok, reread. I still say push for MRI (u need a special kind to blow pics of the pit area up big enough to see..very small on regular brain MRI). I *think* it is possible to have normal prolactin levels and still have the tumor. I'd also see my gyne for sure & make sure to have mammogram. I'm Guessing the gyne, Endo,& maybe neuro (that's who wanted...
  17. Neshema1
    I'm not a doctor; well I am but not a medical doc, a prof with strong background in neuropsych/physiology & a neurological problem myself, which led me back to my celiac dx from after about age 1, off the diet most of my life when docs back then decided it was pancreative digestive enzyme deficiency. Now, back on diet.came to post abt something abt me...
  18. Neshema1
    I have both.
  19. Neshema1
    Yes, from anti-inflammatory drugs. Also have RA since age 9. Didn't know NSAIDs were often poorly tolerated with celiac but then my dx of celiac was thought to be wrong at that point.
  20. Neshema1
    I also think Solgar products are the safest, although I know PURE also is gluten free, some NOW products, and Phytogenetics (I take their riboflavin), but I always check the label even for Solgar. They even have gluten free, vegetarian calcium, which is hard to find. Yes, D2 is worthless, and 100,000 units rx d2 still left my d3 (what your body naturally...
  21. Neshema1
    I have postural orthostatic tachycardia syndrome (pots) dysautonomia. Many of us have gluten intolerance (sensitivity or celiac). U might want to check out our main website dinet.org & see if it sounds like u.
  22. Neshema1
    LOL! I am not too into bananas, rice, or apple sauce after living on them for years!
  23. Neshema1
    Well, I am really glad to hear you do not have POTS! It is a real drag on top of your other issues. I wouldnt wish POTS on my worst enemy! So, good luck with your symptoms. I hope things improve quickly!
  24. Neshema1
    Is your mom heterzygous? DQ2.2 or 2.5? DQ2/DQ5 isn't a very convincing finding, despite my multitude of symptoms and hx and my mother swearing she remembers better than i do. Dont ya think after all these years, the endoscopy would show it?
  25. Neshema1
    I gotta check all my medicines! UGH! I gotta go to the store somehow. I guess whole foods would work. I am a vegetarian. I dont cook. The nutritionist wasnt there today. Maybe I dont need a nutritionist. I mean I can read all the info. Ok, yesterday, other than meds (ok, that is gonna take forever to check), I didnt eat anything with gluten. I am already...
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