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Member Since 21 Jun 2011
Offline Last Active May 11 2015 10:49 PM

Topics I've Started

Gi Appt Today-How To Tell Dr News

26 September 2011 - 07:26 AM

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 a prof), RA, osteoporosis premenopausal, anemia, untraceable D, hyparathyroidism,, all kinds of deficiencies, u name it..list too long. Well back gluten-free a few months. Still have neuro & arthritis but I was abt to be sent back to hematology when my blood tests came back great. My protein is up (even though I've lost weight cuz my albumin up meaning less extracellular fluid), d beautiful, parathyroid a bit high but way better, calcium better, anemia still a probl.em but MUCH improved. I'm finally absorbing nutients & supplements. And fir two days last week my (not to be gross) bm were normal! Never before in my life! I have not deviated at all from diet & a few meds had to be changed from generic tO brand. So, how was I poisoned all these years & every doc but GI thought I had celiac? Apparently the arthritis drugs caused false negative. My health has been ruined. My stellarcareer ruined. Even my heart has been severely messed up. I'm so mad! I'm on disability with every system destroyed. My neuro issue is related to Parkinson's. Can happen from celiac disease! an Md who does

Started Diet-Worse At First!

06 July 2011 - 08:51 PM

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 in no other Gluten that I know of. Any thoughts?

My Dna Results-I'm Confused

21 June 2011 - 05:58 PM

Hi, I'm new here, but was dxd w/celiac at age 14 months (a long time ago & who knows how back then) when i had all the usual symptoms and began losing weight. My mom says I did better the many years as a child on the celiac diet. A few years later, I was told I had a trypsin (pancreatic enzyme) deficiency. I've had all kinds of health problems throughout life, which I can explain if needed. I have had severe bone density problems since my first scan at abt age 30. I have lots of vitamin, electrolyte, protein, albumin deficiencies & high cholesterol. As an adult every doc except GI, in reaction to my other health issues, asks me if anyone ever considered celiac. As far as I knew, my tests always came back negative. well, I got DNA results from quest & was told yesterday I am type 2.2 & going gluten free again may solve many of my other quite serious health issues. I was shocked. When I got home I looked at my copy of the results & a journal article my dr gave me. Well, I don't know if he didn't read carefully or if I really am positive. The test says I'm negative but then lists the following:
Dqa1 *01
dqa1 *02
Dqb1 *0202
Dqb1 *0501
does this mean I'm dqa1 0102 or 0201 or neither? What does the dqb1 mean? Am I positive for type 2.2 or some other type or negative? I'm so confused!!! I tried to figure it out but I just can't. I understand my other health issues, even if this was my first dx! I can't believe after all this time, I was told I actually have positive dna tests for celiac even though the report says negative. I'm supposed to meet with a nutritionist this thursday & my diet already is restricted so much & my life is very difficult. I'm glad to go gluten free if it will help me, but I need to understand these test results. The dr involved is impossible to reach by phone or email. He's not a major player on my medical team.. He's not my GI doc & I'd rather not bother her with this unless I am positive. Please explain! I have a doctorate but not in this! Thank you!

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