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MICROSCOPIC COLITIS SUPPORT
Discussion and Support Forum for Collagenous Colitis, Lymphocytic Colitis, Microscopic Colitis, Mastocytic Enterocolitis, and Related Issues

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Misty

United States

Joined: 28 Jan 2015

Posts: 7
User's local time:
2017 Jun 27 - 9:42 AM


Food Intolerances : Gluten oats barley Corn Eggs Beef Walnuts Soy MSG Lactose Preservatives

PostPosted: Tue Mar 10, 2015 8:52 pm    Post subject: MANY THANKS Reply with quote

Many thanks for this forum and your book and Dr. Fine and Phyllis Zermeno RN at Enterolab...And the PhD who does the lab tests...My MC misery began suddenly on Dec 2 after 2 months of Prevacid and 3 days of never-taken Alleve for a torn muscle. Prevacid had been prescribed after a double scope done for severe nausea of recent date. For 12 weeks I struggled with little sleep due to D up to 30 times a day and always urgent, surprising, well you know, only nice part losing 25 pounds (nice only in retrospect)...all GI doc lab tests normal except for white cells in the stool so GI doc ordered blood celiac gene testing (after 2 weeks off gluten, so wasn't going to be accurate) and at least the DLQ 2 (I think?) gluten gene expression was present...She wanted to do a REPEAT scope to confirm medication-induced Microscopic Colitis since it was clear from September I didn't have Crohn's or UC. Meantime blessedly I had learned about this website, read your wonderful book Tex and was trying to eat differently than recommended by my GI doc because I was worse (which I found unreal) on the white toast and beef broth or beef gelatin suggested to me...Just wanted to cry without sleep and trying to be sane at work and so very tired...Finally tests from Enterolab ordered as well advised by Dr. F and Mrs. Z and I discovered that I am allergic to gluten, oats, corn, eggs, beef, walnuts, borderline on soy in addition to my known susceptibilities to lactose, MSG, preservatives, artificial sweeteners...4 days after stopping all of these I was SO MUCH BETTER, I could not believe it. My new internist (very open-minded, eager to learn, appreciative of the "cowboys" or cutting edge folks who get out there ahead of conventional medicine) then suggested I drop the Metformin of 20 years in case it was contributing (no trouble ever before) and 5 days after that my blood sugar was normal and so was my GI tract! I still can't believe it when I sleep through the night and don't have to jump up at work to flee for the, you know...I also take Probiotics twice a day (with Lactoba GG) and wonder if they should not be given with every new recommendation of a proton pump inhibitor... No nausea now either... My GI doc has said never in her experience has diet helped anyone with MC, never! So although tempted to cancel my follow up at month's end, I am going in so she hears that it does, it does. I sent my Enterolab results to her of course and to my new internist so hopefully the good word will spread...I am DELIGHTED to have Green Valley lactose-free kefir as a substitute for mayo and to take my own food to friends' homes or meet now at Central Market to have lunch or dinner...my energy is starting to come back so I can exercise too...and with my new internist's blessing I am not to be scoped again...new info about CRE on scopes in California as well as the risks of perforation and anesthetic, golly, I don't mind at all not having an official diagnosis if going through that is required...my last test will be a cheek swab for celiac from Enterolab...I am SO GRATEFUL to ALL HERE. Please forgive this long post but I am computer illiterate and scared to hit paragraph tab . sometimes I lose everything that way. And I am finally feeling well enough to start doing all I have left undone for the past 14 weeks...THANK YOU SO MUCH. I realize how truly blessed I am to have such a mild situation compared to everyone whose posts I have read. I pray my results will not discourage you, I know how blessed I am to have this outcome...It helps me to know that anything I have suffered in other ways may help some other people...please know that you and what you have suffered have touched and helped me...I am praying for you all...God bless and keep you all!
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Lilja
Rockhopper Penguin
Rockhopper Penguin
Norway

Joined: 25 Aug 2014

Posts: 871
User's local time:
2017 Jun 27 - 3:42 PM


Food Intolerances : Gluten, casein, soy
Location: Oslo

PostPosted: Wed Mar 11, 2015 1:05 am    Post subject: Reply with quote

Hi Misty,
What an uplifting message! You seem to have done all the right things with the support of good and open-minded doctors, and this board.

I'm sure some of the "veterans" on the board will fill me in, but you are lucky you found us at an early stage.

I was struggling alone for 4 years, until I discovered this forum, and now I feel that I'm on right track. At least for now, we'll see how it ends when I'm off Entocort some time in May.

Lilia
_________________
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30082
User's local time:
2017 Jun 27 - 9:42 AM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Wed Mar 11, 2015 9:53 am    Post subject: Reply with quote

Hi Misty,

Thank you for such an uplifting update, and many thanks for all the kind words. We certainly appreciate the compliments, but remember that you are the one who is responsible for successfully resolving your symptoms. All we can do is to offer information and share our experiences. You deserve all the credit for utilizing that information to formulate a plan to restore your health, and for being dedicated enough to successfully carry out that plan. And kudos to your internist for being open-minded, supportive, and willing to learn new things outside of the usual medical channels.

Your suggestion that all new PPI prescriptions should be accompanied by a recommendation for taking a probiotic is right on target, in my opinion. I'm not a fan of PPIs, but if someone is going to use them, then a good probiotic should surely help to prevent an otherwise increased risk of developing an antibiotic-resistant C. diff infection and/or other adverse events associated with the gut bacteria changes caused by PPIs.

Thank you for posting your success story. I hope that your remission continues forever and your new lifestyle continues to provide many additional benefits to your health for the rest of your life.

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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twirlitgirl
Adélie Penguin
Adélie Penguin


Joined: 21 Aug 2014

Posts: 167
User's local time:
2017 Jun 27 - 9:42 AM


Food Intolerances : gluten,dairy,corn,soy, nightshades these are the ones known
Location: Canada

PostPosted: Wed Mar 11, 2015 1:36 pm    Post subject: Reply with quote

Hi Misty,
way to go... all the best going forward , big High 5 and hugs.. Your story was inspiring and thanks so much for sharing.
red-haired girl
_________________
diagnosed with LC by biopsy
in May 2013 , supplements B complex, Vit C ,Vit D3 Zinc, with a multivitamin, and magnesium to round out the pack.
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humbird753
Rockhopper Penguin
Rockhopper Penguin


Joined: 28 Nov 2011

Posts: 935
User's local time:
2017 Jun 27 - 9:42 AM


Food Intolerances : Gluten, Casein
Location: Wisconsin

PostPosted: Wed Mar 11, 2015 10:10 pm    Post subject: Reply with quote

Congratulations, Misty, and thank you for the positive update.

Very Happy

Paula
_________________
Paula

"You'll never know how strong you are until being strong is the only choice you have."

"Life is not about waiting for the storm to pass... It's learning to dance in the rain."
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