back after 2 years, in pain

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fluffypoodle
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back after 2 years, in pain

Post by fluffypoodle »

I was a member here in 2013. life happened and I kind of let my colitis fall in the back burner. I think what really got to me back in 2013 is the fact that my EnteroLab results were completely negative for everything. I have no reactions or sensitivities, apparently. after the doctors told me "it isn't what you eat," I was mad at them. but when the EnteroLab results came--I just didn't know what else to do!

I recently had a baby. the pregnancy was actually pretty good, colitis-wise. I was able to eat pretty much anything and I was not having symptoms too often. but now--I'm in a flare big time.

I've been using Weight Watchers to lose weight, and am eating a lot of fiber. perhaps that is what sent me into this flare. I need to lose weight (all this diarrhea for years and I am still so overweight!), but I also would like to not be in pain anymore. I just don't know what to do.

I haven't seen my GI doctor in a few years, either. not since he told me I was cured and did not have MC anymore...

Thank you for listening. If anyone has any thoughts, I'm all ears!!!
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tex
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Post by tex »

Hi,

I'm sorry that you're still having symptoms. There are 3 possibilities for why your EnteroLab results were all negative.

1. You were taking Budesonide or some other med that may have suppressed your ability to produce antibodies.

2. You have selective IgA deficiency (which can be verified by a simple blood test).

3. You have no IgA-based food sensitivities.

If number 3 is true, then the fact that your symptoms resolved during pregnancy further supports the likelihood that your symptoms are primarily due to mast cell issues, rather than T-cell-associated inflammation (which is claimed by the medical community to be the primary mode of inflammation associated with MC). IOW, I have a theory that mast cell-associated inflammation can also cause MC, or at least perpetuate it.

The explanation for why I believe that mast cell issues are resolved during pregnancy can be found in this quote taken from page 175 of Microscopic Colitis:
Certain hormone levels are apparently linked with MC. Pregnancy, for example, causes drastic hormonal changes in a woman’s body. Doctors have long been baffled by the fact that some women experience remission from the symptoms of MC during pregnancy, while others find that their symptoms become much worse.

Research shows that during pregnancy, very high concentrations of DAO are produced by the placenta (up to 500 times as high as the normal level).15, 17 It seems rather logical to conclude that if mast cell activation disorder is a prominent cause of the patient’s MC symptoms, then clearly the huge increase in DAO during pregnancy should greatly enhance the odds of remission, whereas if mast cell issues are not a significant factor in her reactions, then the other hormonal changes (estrogen and progesterone for example) will tend to cause the MC symptoms to become worse for the duration of the pregnancy.
DAO stands for diamine oxidase enzyme, which is produced by the body to purge the blood of unused (leftover) histamine. IBD patients tend to be low on DAO when their disease is active, thus allowing a possible histamine buildup in the blood. And here are references 15 and 17 from that quote:

15. Maintz, L., & Novak, N. (2007). Histamine and histamine intolerance. American Journal of Clinical Nutrition, 85(5), 1185–1196. Retrieved from http://www.ajcn.org/content/85/5/1185.full

17. Morel, F., Surla, A., & Vignais, P. V. (1992). Purification of human placenta diamine oxidase. Biochemical and Biophysical Research Communications, 187(1), 178–186. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/1520 ... t=Abstract

Here are links to some short articles that contain basic information to get you started learning about mast cell issues that can be associated with MC:

What are mast cells?

How are mast cells associated with microscopic colitis?

How do I know if mast cells are causing problems for me?

How are mast cell issues treated?

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.
fluffypoodle
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Post by fluffypoodle »

thanks, Tex! how interesting, I will have to read the materials you provided. I was not on any meds when the testing was done and I did have a negative blood test.

Thanks again!
HappyBird
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Post by HappyBird »

Hello Fluffypoodle..........

Sorry to hear you are back in a flare after such a long time. Welcome back, hope you are better soon.
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crervin
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Post by crervin »

So Sorry you are back! I was the same when pregnant and wanted to stay pregnant the rest of my life. Since I can't, I'm now on the diet and feeling better. Maybe you could have the IgA deficiency blood test, just to see. I've been wanting mine tested, but can't seem to talk any dr into it. Maybe you will have better luck.

Good luck and hope you can get relief soon!
Martha E.

Philippians 4:13

Jul 2008 took Clindamycin for a Sinus infection that forever changed my life
Dec 2014 MC Dx
Jul 15, 2015 Elimination Diet
Aug 17, 2015 Enterolab Test
Dec 2015 Reflux
Sept 2016 IC
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Gabes-Apg
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Post by Gabes-Apg »

I am one of those that has struggled with being overweight, despite MC and lots of diarrhea in the early stages

One thing I have found in my 6 year journey, weightloss happened easily when I balanced nutritional deficiencies and my systems (adrenals, immune, endocrine etc) were all functioning like they should be...

to alleviate the pain, i would stop the high fibre eating plan.
what works for majority of MC'ers is a bland, well cooked, low amount of ingredients eating plan. this reduces the inflammation and the pain.

Look at the histamine/mast cell articles, enviro influences make food reactions worse, so look at chemicals, pollen, dust, mold, etc etc

Sadly there is no 'quick fix' or guaranteed solution with this stuff, what works for one, may not work for another, you have do a bit of trial and error and figure out what works for you... but getting onto a low inflammation safe eating plan is the best way to minimise symptoms while you sort the other stuff out..

hope this helps
Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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