Please help! 😢

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sctn10
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Joined: Mon Apr 09, 2018 8:49 am

Please help! 😢

Post by sctn10 »

Hi all!

I’m new to the message board and semi-new to MC. I’ll give you some background in hopes that you all can help me.

I’m 24 and started having symptoms around 21. I had uncontrollable D, I absolutely could not stop it. I visited my family doctor and she put me on a GF diet. When I saw changes, she diagnosed me with a gluten sensitivity. Fast forward a year, I saw great changes but still had symptoms that progressively got worse. I went back and got a referral to a GI. In August of 2017 I had a colonoscopy and an EGD. It was then I was diagnosed with Celiac disease and Mocroscopic colitis. Since my diagnosis I have had blood in my stool on two separate occasions. After being checked for hemorrhoids and there were none, I was told this is just a symptom of my diseases. I’ve also gained about 10-15 pounds that I’ve contributed to the medication.

My GI put me on budesonide (which is incredibly expensive, might I add.) It has helped tremendously, but I still have D that is sometimes uncontrollable. The only food sesitivites I’ve found are popcorn and some vegetables (no raw vegetables at all.) And of course I stil far away from gluten. I’ve taken 9mg a day since October. When I tried to go down to 6mg all of my symptoms came back.

I can’t figure out what is normal and what isn’t. Fortunately, no one I know personally has these issues. The down side to that is I have no one that even remotely knows how this feels.

I’m not sure what my next steps are. My doctor says the plan is for to one day stop taking the steroids but I can’t see light at the end of the tunnel. I have dreams of traveling and starting a family but can’t even begin to consider it given my symptoms and medication.

If anyone has any advice, testimony, solutions or ideas, I am ALL ears.
Thank you in advance!
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tex
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Post by tex »

Hi SC,

Welcome to the group. In general, you need to find out what other foods cause you to react, because you can't stay on budesonide forever. In addition to gluten, most of us are sensitive to dairy, soy, and chicken eggs. If you can justify the cost of the EnteroLab tests (Panels A1 and C1) your job of selecting safe foods for your recovery diet will be greatly simplified. However, if you have been taking budesonide for more than about 6 months, the tests may not work, due to the fact that corticosteroids suppress the immune system.

You have been misinformed — celiac disease and and microscopic colitis do not cause blood in the stool — that's a symptom of Crohn's, UC, or ischemic colitis. So you need to check that out. Are you taking any NSAIDs (such as aspirin)?

Again, welcome aboard, and please feel free to ask anything.

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.
sctn10
Posts: 3
Joined: Mon Apr 09, 2018 8:49 am

Post by sctn10 »

I’m starting a food elimination diet this week. If I had to guess, excess amounts of dairy are one of my issues.

I had nott taken NSAIDs before my first bout, and I’ve made sure not to take any since.

Thank you for your help! I’ll also check into the tests. I would try just about anything at this point.
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Gabes-Apg
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Post by Gabes-Apg »

welcome to the board

agree with everything Tex has said above.
fine tuning diet and removing high inflammation ingredients (like dairy) is very important to long term successful 'living with MC' management plan

we have a guidelines to recovery section that has good information on low inflammation gut healing eating plan, and other resources to assist.

https://perskyfarms.com/phpBB2/viewforum.php?f=79

hope this helps, happy healing
Gabes Ryan

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