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janr
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Greetings

Post by janr »

Hello, new here. I would have explored this site sooner except that I had a MC negative biopsy a couple years ago. But since another gastro dr. told me there were questions about the protocol and my symptoms fit, I believe I belong here. I had a history of IBS until I gave up gluten and sugar about 15 years ago. I was pretty good until I contracted Blastocystis and Entamoeba histolytica 3 years ago. The infections along with too many antibiotics left me with chronic inflammation, bloating, malabsorption and numerous food intolerances along with autoimmune problems and mast cell issues like chronic flushing. I have identified many food triggers but not all. Symptoms have improved with a low histamine diet, large amounts of ginger, Zyflamend and too much pepto bismol :/ I do not currently have a GI dr. – dumped the last one when he wanted to do a 2nd CT scan 1 year after the first one that showed nothing. I’m excited to see there is a recommended gastro in MI close to me but I am hesitant because my experience with recovery from clean-outs for colonoscopy has been horrendous. I don’t know whether there are non-invasive tests that might be helpful. For now I’m looking forward to exploring the site and checking out “the book”. I am also very interested in the Enterolab testing and people’s experiences in terms of accuracy. I had little success with IgG blood testing. Sorry for the long post…Any advice is welcome! Thanks,
Jan
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Gabes-Apg
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Post by Gabes-Apg »

Jan
gday and welcome....

whether it is IBS, MC, UC, Crohns, alot of what is discussed here can be very helpful! You dont need a diagnosis to be part of this family.
Anyone keen to be proactive about their health and wellness is always welcome.
:shakehands:

Infections and/or meds are a common starting point for many MC'ers.

I am unable to comment on the Enterolab testing, I have managed to figure out my major triggers via elimination /food journal, and over the past 4 years since Dx, i have also identified the 'sometimes' ingredients/foods that i can only have a couple of serves of per week.

take your time to digest (pun intended) the wide array of topics/discussions... and take comfort that you have found a great bunch of people who want to help you minimise/eliminate symptoms.

have a great weekend
Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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UkuleleLady
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Post by UkuleleLady »

Hi Jan and :welcome:

I found Enterolab testing to be very helpful in terms if weeding out some common foods that I may not have otherwise avoided. Namely, dairy, chicken, rice, and eggs. I was already off gluten when I tested (and i still had high antibodies to gliadin). You can see my and others' results elsewhere on the forum.

I can't explain how scientifically accurate the testing was, but, I know that I react violently to rice and dairy, because I tested them after I had been off entocort and was doing well. Rice gives me enormous pain, dairy gives me pain and D.

Enterolab gave me a good framework for building my new diet, I was lucky I had the money to pay for it because it is expensive, but I don't regret one penny spent.

I hope this at least gives you some insight.

Nancy
If you want others to be happy, practice compassion. If you want to be happy, practice compassion. ~The Dalai Lama
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sunny
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Post by sunny »

Jan, glad you found us; sorry you had to! I can relate, as a 4 month bout of Cdiff and multiple doses of ever stronger antibiotics caused my MC ( which had been in remission for 5 years) came back with a vengeance.
When I rejoined the group I spent weeks reading everything I could, plus purchased Tex's book which I read twice & refer back to frequently. This is an ineffective, safe place to learn and heal.
Sunny
"It is very difficult to get a man to understand something, when his salary depends upon his not understanding it. "
Upton Sinclair
janr
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Post by janr »

Thanks so much everyone. This site and your comments have given me some new hope for the holidays, for which I'm very grateful.
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tex
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Post by tex »

Hi Jan,

Your interpretation of your second GI doc's request to redo a test so soon is probably right on target, because doctors who don't believe the results from colonoscopies, CT scans, etc., are typically novices to treating MC, and they are using the repeat tests to try to learn more about the disease. They can't believe that they couldn't see something on the previous test, so they are always thinking that they are missing something.

They could learn much more about the disease by reading the posts on online discussion boards dedicated to the disease, or by studying recently published research articles, but they often choose to use their patients as guinea pigs instead, because it pays so much better.

I agree that the caustic cleanout solutions used to prep for colonoscopies should be illegal. They definitely add to the inflammation for most of us. Some of the products have been taken off the market, because they have been shown to actually cause the development of MC where the patents did not have it before using the prep. But the ones still in use are not much better, and they could probably also be shown to cause the disease, if someone actually did the necessary research trials.

Thanks for the insight into your history. Everyone seems to arrive at this disease by way of a slightly different route.

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.
Leah
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Post by Leah »

Welcome Jan. You are on the right track with your diet. The Enterolab tests are pretty accurate as long as you are not IgA deficient. You can get a simple blood test to determine that. Unfortunately for me, I didn't know this at the time I paid for panels A ,C and yeast. So I had to do it the harder way, but I do know from everyone here who has had the tests, that it has helped them tremendously figuring out the diet that helps them heal.

Keep us posted. The book is great.
Leah
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