Does anyone here have micosopic colitis

[Beachgrl]

I have microscopic colitis. Having a bad flare of D.  On Budesonide for first time for this. It's helping some- only on it a week. Do you think gluten free would help even if tested negative a few years ago?  Was gluten free yesterday and no BM changes. Even had cramps this AM that wasn't really having before. Thank you!!

[GFinDC]

Hi Beachgrl,

We have had members with microscopic colitis before, usually in addition to celiac disease.  Have you been tested for celiac disease?  The reason I ask is, it is much better to be tested for celiac before starting the gluten-free diet.  The primary tests for celiac are to detect antibodies to gliaden in the bloodstream.  Those antibodies start to decline when a person stops eating gluten, so the tests become useless.

There is no reason a person can't have more than one digestive system disease.  So it is smart to be tested for celiac disease if you can get the testing arranged.  Any change in symptoms after stopping gluten is an indicator that gluten is causing a reaction of some kind.  It could be celiac, or it could be non-celiac gluten intolerance, (NCGI).  There aren't any reliable tests for NCGI yet.

Welcome to the forum!

[Beachgrl]

I was tested a few years ago and was not positive. However I wanted to try this as I'm to have surgery in a duplex months and am doing all I can to not have D!! Thx!!!

[Alwayssomething]

The first time they tested me for Celiac I only came back with Micro Colitis and I was given medicine to take daily.     I was actually diagnosed with Celiac through the skin tests for DH at a later time (after more suffering) I ditched the medicine for the colitis and went 100% gluten free.     (I was also diagnosed with a couple other auto immune all around the same time)

On ‎8‎/‎29‎/‎2016 at 7:01 PM, Beachgrl said:

Was gluten free yesterday and no BM changes. Even had cramps this AM that wasn't really having before

I don't think you could possible see any sort of change in one day.    If you would like to try gluten free to help the MC you need to commit 100% and give it time.   For me personally the first three weeks where crazy and tons of withdrawl, but then I noticed little things had changed.  My face was not as red and had stopped burning, my joints hurt less.   Less stomach issues.....and each day gets better and better

 

[GFinDC]

Hi Beachgrl,

It won't hurt anything to go gluten-free now, except the possibility of getting a diagnosis of celiac disease.  When i went gluten-free, it seemed like the initial changes were spread over about 6 weeks.  I had gut spasms for that time.  And other changes, all for the better.  Initial recovery from celiac damage can take up to 18 months, so it can be a slow thing.  Some people get better much faster of course, because we are all individuals and not identical.

Going gluten-free for celiac disease is a lifetime commitment though, and some people have a hard time doing that without a diagnosis.  Even minor amounts of gluten can cause us to react, so it is best to eat a very simple diet of whole foods at first.  Avoid dairy and processed foods.  I hope it works out for you.  I know some people with Crohns disease eat gluten-free and find it helps them.  Gluten is a tough thing to digest for all people, but most don't have an immune reaction to it like celiacs do.

 

[Posterboy]

Beachgirl,

I do not have microscopic colitis but I agree with GFinDC.   It is not uncommon to have multiple GI diseases in the same person. 

It is called Co-Morbidity.

I do a lot of nutrition research (5+ years since my Celiac diagnosis) and it is sad to see how often doctor's don't find/recognize gluten as the trigger and a totally avoidable condition could be eliminated.

Most people will show symptom improvement (flareup remission) in a month of being dedicated gluten free though in most people it takes a diagnosis of Celiac for people to try as GFinDC notes.

Concerning your microscopic colitis check out this study that Jefferson Adams reported on at Celiac.com

https://www.celiac.com/articles/22610/1/High-Rates-of-Microscopic-Colitis-in-Celiac-Disease-Especially-Among-Middle-Aged-Women/Page1.html

where the Canadian researchers note quoting

"These findings showed a strong association between microscopic colitis and celiac disease. In fact, the diseases occurred together in the study population at rates of about 50-times those expected in the general population."

As far as do you need to test again for Celiac I would say definitely YES!  It just means at the time of your test (however many years ago that was) that damage to the Villi was not yet occurring.

See this new research on Celiac.com

Where they say 90+ percent of those who have NCGS will develop Celiac disease when challenged with Gluten. 

Sadly I don't think the article says how long that takes to happen.   

https://www.celiac.com/articles/24448/1/Gluten-Definitely-Triggers-Symptoms-in-Some-NCGS-Patients/Page1.html

See new research at the link below of what/why this is and that explains the difference between a wheat allergy and NCGS.

Open Original Shared Link

You may now have advanced to a Celiac diagnosis.  Only another test or biopsy will tell.

According to the article linked above

"In celiac patients, the Open Original Shared Link occurs in the small intestine. In healthy people gluten passes harmlessly through the digestive system, but in people with celiac the body mistakenly mounts an immune response against the proteins found in wheat, causing extensive damage to the intestinal lining. People with suspected celiac are Open Original Shared Link that looks for anti-gluten antibodies. The disease is then diagnosed with an intestinal biopsy showing this damage. However, celiac patients do not have an associated spike in their blood markers indicating high immune activity.

This is where NCGS patients differ. While these patients don’t show the same kind of damage when they’re given a biopsy, their blood panels tell a completely different story. This group showed a spike in blood markers associated with intestinal damage unlike anything seen in the celiac or control group. They also showed a systemic immune reaction after consuming wheat, which is a major difference from the more limited immune reaction of celiac patients."

According to Dr. Mark Hyman if the serology (blood work) is positive biopsy may not be needed for his money's worth.

Open Original Shared Link

While biopsies can be a piece of mind security he (Dr. Hyman says) that is not necessary.

Quoting Dr. Hyman in the HuffPost

"In light of the new research on the dangers of gluten sensitivity without full blown celiac disease, I consider any elevation of antibodies significant and worthy of a trial of gluten elimination. Many doctors consider elevated anti-gliadin antibodies in the absence of a positive intestinal biopsy showing damage to be “false positives.” That means the test looks positive but really isn’t significant.

We can no longer say that. Positive is positive and, as with all illness, there is a continuum of disease, from mild gluten sensitivity to full-blown celiac disease. If your antibodies are elevated, you should go off gluten and test to see if it is leading to your health problems."

So In summary it wouldn't  hurt anything to get some blood work done and see if your antibodies are high and then get off gluten. And as he (Dr.Hyman) noted 5+ years ago quoting again "as with all illness, there is a continuum of disease"  and the science is now catching up to this fact.

The question is where are you on the continuum now.  ONLY another blood test (and maybe biopsy) if you still think you want to go for the "gold standard" will tell but Dr. Hyman (read whole article) says it is probably not necessary today.

To quote an old adage "Where there is smoke there is fire".  The antibodies is the smoke the fire is the damage of the villi and according to new research on NCGS 90+ percent  (noted above) do indeed burn up their Villi on a gluten challenge.

And linked here again for your convenience https://www.celiac.com/articles/24448/1/Gluten-Definitely-Triggers-Symptoms-in-Some-NCGS-Patients/Page1.html

Sadly we don't know how long that will take but we can be sure it is happening if gluten antibodies show up in the blood work.

I hope this is helpful.

Sorry for the long post but I covered a lot of information in this post.

Good Luck on your Journey back to health.

Posterboy,