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All The Wrong Tests First

Keshavdas

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Keshavdas Apprentice
Keshavdas
Posted

Months ago I did a blood panel because of fatigue. Tests came back with high numbers for gliaden. My idiot family doctor just said, "You've got celiac". Naturally I stopped eating gluten and got really sick. Meantime - was also seeing a chronic fatigue Dr. who pointed out my iron deficency. This guy is supposed to be one of the world's foremost authorities on Chronic Fatigues and all he could offer was "eat a lot of spinach". Another short-sighted idiot. Read about Doctor Eng on this forum. Made an appointment and when I got there it turned out the the Eng who was recommended - was his younger brother - who'd moved his practice elsewheres and I kind of got bullied into staying - as he was saying he was the elder brother with more medical experience and that he knew everything about Sprue. He told me the gliaden readings were not solid evidence of Celiac and that I should have a colonoscopy. I did and and only afterwards did he tell me that this was not to test for Celiac - but rather to confirm that I did not have colon cancer. I was furious, as I had no indications for cancer at all. Photos from the colonoscopy revealed very healthy looking villi. He then did blood tests for genetic markers - giving me the impression that this would confirm one way or the other what my status was. Then this jerk tells me - the blood tests were not conclusive either and that he wants me back for an endoscopy / biopsy, which I figure - is what this guy should have done in the first place. So many of these guys are just crooks who want you to have useless expensive tests at labs that are run by their family or worse owned by themselves. It's so infuriating. Moreover - doing the biopsy will entail eating gluten for at least a week before the test. I have had so many good results from being gluten free - that at this point I'm wondering if it's worth the bother to do the biopsy. Does it really matter in the long run

if I have Sprue,

am gluten intolerant

or have wheat allergy?

If wheat is making me ill - what difference does it make? I do not intend to go back to my old diet anyhow.

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shadowicewolf Proficient
shadowicewolf
Posted

I went gluten free after being told that my IGA TTG was positive (the rest of the panel was negative). Four weeks later i had the biopsy, again negative. Positive for both genes and a very positive reaction to the diet.

Crooks? mmm i don't think so. Uninformed? Oh yes, definitely.

The only thing a dx is good for is A. if a child is attending a school and needs a dx for accommodations (this applies to university level as well), or B. there are parents, siblings, and children in the picture that have similar issues. This would help them get a possible dx.

Ollie's Mom Apprentice
Ollie's Mom
Posted

How is a colonoscopy supposed to show the condition of small intestine villi? Wow...

If you don't need a diagnosis for any of the reasons shadow listed above, and you know you feel better gluten-free, just skip the diagnosis.

If you feel you need a diagnosis, get a new doctor!!

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