But I tested negative to celiac in the blood test....

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Gabes-Apg
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But I tested negative to celiac in the blood test....

Post by Gabes-Apg »

for those that are new to life with MC, I found this article and diagram today, thought it explained the situation very well as to why you may test negative to celiac in the blood test, but gluten still be a highly inflammatory gut damaging ingredient (and the article mentions Kenneth Fine)
But we now know that people can and do react to several other components of wheat and gluten. The diagram below shows how wheat and gluten are broken down in the body:
Image
Current laboratory testing for gluten intolerance only tests for alpha-gliadin and transglutaminase, the two components of gluten implicated in celiac disease (highlighted in red in the diagram). But as you can see, wheat contains several other components including lectins like wheat germ agglutinin (WGA), other epitopes of the gliadin protein like beta-gliadin, gamma-gliadin and omega-gliadin, another protein called glutenin, an opioid peptide called gluteomorphin, and a compound called daminated gliadin produced by the industrial processing or digestion of gluten.

So here’s the thing. Studies now clearly show that people can react negatively to all of these components of wheat – not just the alpha-gliadin and transglutaminase that celiacs react to. And the worst part of this is that up until about 2 weeks ago, no commercial labs were testing for sensitivity to these other subfractions of wheat.
https://chriskresser.com/beyond-paleo-2/
Gabes Ryan

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tex
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Post by tex »

That appears to be a good article.

Thanks for the link,
Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by Erica P-G »

I enjoyed that article, and I shared it with family & friends :wink:

Gotta get some of what I'm dealing with out there and pounded into the heads of those that forget that I deal with is a constant struggle every day....whew.
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bone broth

Post by mjgarr »

I need a recipe for bone broth. I have seen it but now I can't find it.

Thanks mjgarr
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Post by tex »

:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by rudi »

I have read the articles and it seems like you cant eat anything, no dairy,no fruit, no grains,no soy, wtf!
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Post by tex »

Rudi,

Our paleo ancestors evolved over millions of years on a diet that contained absolutely no dairy, grains, or soy. And it contained some fruit only when that fruit was in season (normally most wild fruits are available only for a few weeks each year). In modern times, people have stopped eating to live and started living to eat. They've turned eating into a ritual (social event), and they've forgotten that it's only a normal body function (a primal necessity of life).

No one ever said that sticking to a safe diet was easy. They merely pointed out that it's a heck of a lot more appealing than living in the bathroom, and trying to soothe inflamed hemorrhoids for the rest of our lives.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by rudi »

Rudi again,
Sorry to be so negative, but I am extremely discouraged, and ready to quit eating anything. Have to wait and see what my dr says, but you all dont seem to have much trust in them.
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Post by tex »

Hi Rudi,

I can't speak for anyone else, but I trust my doctors. I just don't trust their judgement on anything that might affect MC.

Here's an example of why they can't be trusted around MC:

Tuesday morning about 10:00, I emailed my GP that my jaw was swelling from a toothache. I asked him if he thought I should just tough it out (because he knew, or at least I thought he knew, that antibiotics can be rough on an MC patient). Within about 2 hours, I received an email from the pharmacy that my prescription was ready to be picked up. So I drove to the pharmacy, impressed by his fast response. When I saw what it was, I was deflated — amoxicillin, which according to our combined experiences, is the worst possible choice for an MC patient. The pharmacist offered to call him and explain why I couldn't use that antibiotic. The doctor insisted that was what he wanted me to take, because it was much safer (referring to the black box warnings on Cipro).

So I went back home prescriptionless and emailed him again, and told him that I appreciated his fast response, but I had to decline that prescription, and stated the reasons. I told him I had to have either azithromycin or Ciprofloxacin, and that I realized that Cipro was loaded with Black Box Warnings, but I'd rather take my chances with it than risk an MC relapse or C. diff infection, as it's the only antibiotic that never triggers an MC relapse. I had almost written him off, when lo and behold, an email from him popped up the next afternoon advising me that he'd faxed a prescription for Cipro to the pharmacy. I hope I won't have to start looking for a new GP.

I already had D from the stress of the toothache. The Cipro stopped it in a day. I hope it will stop the toothache. :lol:

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by JFR »

I trust my doctor for some things but not when it comes to advising me on what to eat and what not to eat. For that I have had to make my own way. This forum is what saved me from a life spent in misery in the bathroom. I eat meat and veggies and a few nuts along with coconut oil and olive oil, coffee and tea. I've been eating this way for many years now and I am perfectly satisfied with it. As Tex said, it's a lot better than a life spend in the bathroom.

Jean
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Post by rudi »

Where are the black box warnings?.
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Post by tex »

If you're asking about Cipro, they're on the label. If you're referring to the diet we advocate, there are none. Here's a brief summary of the black box warnings for Cipro:

https://online.epocrates.com/drugs/5021 ... x-Warnings

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by ldubois7 »

Great article, Gabe’s!

My GI wants to do an endoscopy procedure to check samples for inflammation, which I know is still a problem, but what else could it show me?

I’m still fighting the bloat, and sporadic episodes of having to use the batheroom 4-5 times in a day, and my gluten score on my recent Enterolab test is still showing reaction to gluten even though I’ve been gluten free for 5+ years!

So, what else could the endoscopy show me that might help me?

Thanks 🙂
Linda :)

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MTHFR gene mutation and many more....
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tex
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Post by tex »

I'm obviously not Gabes, but I'm pretty sure that it would simply confirm the inflammation without providing any additional clues, unless you happen to be lucky enough to get a very astute pathologist and/or GI doc.

My experience with Internet tech help in general this past weekend proved once again the value of experience and open mindedness. Out of the at least 5 or 6 "experts" I talked with concerning the website issues, only 2 had enough experience and knew what they were doing well enough to be able to actually provide any help. The rest were no help at all. :sigh:

If all of them would have just done their jobs correctly, I would have only had to make one single phone call, and this site would have been down only a few hours. Because of their incompetence, I had to make about a half-dozen phone calls, and the site was down for several days. :anger:

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by ldubois7 »

Tex,

My question wasn’t specifically for Gabe’s, I just really enjoyed the Kresser article. 🙂

That’s what I was wondering....what could the endoscopy show that would help me in my journey? I didn’t know if anyone else had it done and gleaned some new insights from it.

How frustrating your week was! It’s like when I call my internet provider....it’s always the run around, and if you call three different people with the same question, you get three totally different answers! It’s enough to make you crazy!

Speaking of going crazy....it was -12 this morning in my neck of the woods. 🥶

How are you faring in TX?
Linda :)

LC Oct. 2012
MTHFR gene mutation and many more....
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