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On my controversial celiac status


dixonpete

1,132 views

It's been suggested that I clarify my claim of being celiac. Something of some importance as I am making the claim that at least for myself using hookworms has improved my life as a celiac, and making that claim on a celiac-oriented site no less.

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I have never had a positive biopsy test for celiac disease. There, I've said it.

That said, I maintain that there is very little doubt that I am celiac, and the only reason I don't have that positive test is that I get far, far too sick to be able to do the 6-8 gluten prep pre-biopsy. I'm talking non-stop diarrhea and vomiting for that entire period of the prep - often simultaneous diarrhea and vomiting - all to tell me something I already know. I refused to do that gluten eating prep back in 2008, and I will never do it in the future.

My aunt and cousin on my father side are both certified celiacs with identical celiac symptoms to me, though without my colitis. I also experienced dermatitis herpetiformis (DH) on my temple, though I didn't know that's what it was at the time. My celiac disease activated when I was 42 and a half and carried on till I was 45 when I recognized it was gluten that was making me sick. My up to 11x a day bouts of diarrhea ended the day when I stopped consuming gluten.

Over the next 10 years (2008-2018) I was glutened about 20x, mostly concentrated in the beginning when I was learning the ropes. Surprises like flour being put into packages of pistachios, a generic antihistamine's capsule being made from gluten instead of corn starch like the brand name antihistamine. During those years I did everything I could to avoid gluten exposures, rarely eating out of the home and never knowingly taking chances. My gluten exposures always resulted in violent reactions.

I apologize if anyone feels misled, but for me the evidence is overwhelming that natively I am a highly reactive celiac. To prove that though I would have to kill off my hookworms, wait perhaps another 6 months until their effects on my immune system were totally gone, and then endure 1.5-2 months of torture to prove something I don't need proof of. Ain't gonna happen.

Anyway, for the remaining doubters, I put to you the following: I deliberately infect myself with hookworms. Who in their right mind would do that without good reason?

2 Comments


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Elaine Browning

Posted

Totally agree I had positive antibodies but no biopsy no need it’s barbaric 

it’s clear when you know you know 

dixonpete

Posted

1 hour ago, Elaine Browning said:

Totally agree I had positive antibodies but no biopsy no need it’s barbaric 

it’s clear when you know you know 

Back in 2008 when I figured out I was celiac, no mention was made by my doctor about antibody tests, so I never took one. After being prompted by the mods here on the site I did get a clear antibody test a year or two ago while on hookworms and consuming gluten. It was completely in the normal range.

Getting a normal biopsy while on hookworms and gluten wouldn't prove anything to the skeptics as that initial diagnosis was never made.

It's unfortunate that my doctor was on vacation back in 2008 when I made my discovery. By the time he got back I had already been on a gluten-free diet for at least several weeks, potentially invalidating the biopsy.

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