MICROSCOPIC COLITIS SUPPORT

Hello and hoping this finds you all safe, well and as stress-free as possible.

I recently ventured into the Enterolab testing-realm after nearly 2 years-post MC diagnosis.
I had known I was Celiac since around 2016 but was not terribly sick until hit hard with CC in the early spring of 2018, at which point my diet became extremely limited/ bland and vigilantly GF. Fortunately, I found this forum and all of the kind, generous and wise souls here to help me regain my clarity and direction on what to do and how to proceed.
(I had been DF for years prior.)
So heading into this test (A1/ C1), I have been two full years GF, DF, Soy free, corn free and oat free.. no processed foods, additives, etc.
I am concerned because of a very high Anti-gliadin that came back as 340 Units
and also, the Quantitative Fecal Fat at 847.
No food groups were 'non-reactive' ( I was over the normal limit for eggs, soy and milk, which was no surprise.)
Only Cashews were 1+
Most all of the others were 2+ and then Walnut, Tuna and Corn were all 3+.
My 'Mean Value of the Antigenic foods' that were tested, was 21.

So, just putting it out there for those who have had the testing done, for any insight at all.

(I am extremely vigilant about any contamination, cook most all of my own food and have a very limited diet at this point, so the contamination factor is baffling.
I also realize that if the immune system is bad enough initially, after some healing the IgA levels can go up.)

I would be very grateful to learn of anyone else's journey with interpreting and working with results.

Thanks so much in advance!
Take care~

Wow, Jacqueline, that is crazy! I don't have answers for you but want you to know I'm sending you strength and healing prayers. I'll be very interested to hear what you learn. xoxo

Jacqueline wrote:I had known I was Celiac since around 2016

That implies that you might not have been 100 % compliant to the GF diet for a couple of years following diagnosis. Antibody levels continue to climb if a particular food sensitivity is not strictly followed. Anti-gliadin antibodies have a half-life of 120 days. Most other food sensitivities result in antibodies that have a half-life of only 5 or 6 days, by comparison. This means that when celiacs do not strictly follow the GF diet, anti-gliadin levels can eventually become very high for certain individuals. Due to the extremely long half-life, anti-gliadin antibodies tend to decline very slowly after the diet is invoked. Therefore if one's anti-gliadin level is allowed to climb to a very high level before the diet is followed, it can take years for the level to decline.

I could be wrong, but I have a hunch that if you did delay complying with the diet for a couple of years after your celiac diagnosis, then your high levels on that test may be a reflection of extremely high levels when you started the diet. Also, with such high starting levels, a cross-contaminated diet would probably have an exaggerated effect since it would seriously slow down the rate of antibody level decline.

The point is, those high levels could be a sign of cross contamination, or they might just mean that your anti-gliadin level was in the stratosphere when you became serious about following the diet, and it will require a very long time to return to normal.

Just thinking out loud here, and as I pointed out, I could be wrong.

Tex

Hi Tex,
I appreciate your insight.. it helps keep things in perspective as I continue to try to put the pieces together.
I was 'diagnosed' around 5 or so years ago but probably had the Celiac situation going on for a really long time, probably since childhood. I recall some pretty significant stomach/ GI issues from that time period of my life.

There would be a lot of years for damage to have built up, so your theory could be right on with the 'stratosphere' initial numbers.

Looking at my limited diet, I have cut out the few possible contamination sources (a gluten free organic millet that I was getting from bulk bin and a grain free, gluten free--but not certified GF-- bar with nuts and seeds.)
I am also cutting out most of the foods on my 2+ list from Enterolab, but have to be careful because there is not much left for options. I was eating a lot of rice but have cut that out, unfortunately, because I found it so filling and satisfying.

I really cannot afford to lose anymore weight or have less energy in my days-- not having fatigue was something I had gotten used to and I can tell a difference in just a few days after having cut out some of my 'staples' that I was sensitive to on my test. My energy is not as great-- trying to find good proteins is difficult. Bone broth was something I felt was helping but with chicken on the 2+ list, I've decided to try some turkey and lamb broth-- just picked up the product today. I have been rigid with only seafood for such a long time, so this is a big step for me, but definitely worth trying out. I will try to eat the turkey and lamb meat as well as it seems that they are gentle alternatives for many of us.

Hoping more will become clear in the near future as I continue to sort through it all and experiment daily with cleaner choices, that should less triggering for my system.

I realize it is such a fine line between getting enough nutrients/ protein in for healing but not overdoing it to stress and/or re-damage the tissues of the GI tract. So, I remain grateful that I am not feeling horrible or having pain or diarrhea at this point-- just not feeling settled after most meals and daily stool(s) rather loose. Also grateful to find these things out, get a chance to fine-tune/ improve and ultimately prevent a flare and facilitate needed absorption and healing. Mostly just so grateful for the support I have found here.

Thanks so much again and hope you are staying well in TX!

Decades of gluten sensitivity before diagnosis certainly might have generated a truly high antibody level. And it may take a quite a while before your colon learns how to properly perform if it's had many years of corrupted behavior.

I'm laying low and doing fine, thank you. But speaking of the virus, I notice that Covid-19 cases have spiked in my county during the last week. And almost all of the new cases are being diagnosed in the largest city in the county (which is not particularly large as cities go), where there have been regular, relatively large demonstrations during the past couple of weeks. Of course many businesses reopened during that time frame, also, but that does't appear to have affected the Covod-19 case numbers in the other cities in the county. I can't help but wonder how case counts are responding in all the big cities.

Tex

Hi Tex,
Thanks again for the continued insight/ correspondence.. and as for the virus, I have been following the case counts across the country and locally for quite some time. At our hospital, in-patient numbers are down overall, but I am still wary of a surge after the summer months of more social activity and re-opening (we went 'green' phase on Friday). I see the reports of younger cases in certain locations across the nation, which makes sense with that population being social, and have noticed other states like TX, AZ and CA. How are you? The bigger cities have definitely been hit worse than rural areas where there is less density, per capita... I have been wondering how things are going for you as I see the reports from your state.
I am grateful that we seem to have a better handle on how to treat it clinically and that perhaps the second wave will be less severe, but that remains to be seen. I believe the fall/ winter months will tell us a lot regarding all of that.
Several colleagues have had it in our department.
I still remain extremely vigilant with distancing and masking with friends/ family and am trying to learn as much as possible as they uncover more understanding about how the virus works.

I have been feeling much better, cutting out all grains (rice is really the only thing I was eating consistently, along with a small amount of Millet). I spoke with Dr. Fine several weeks ago and now have a better perspective on how damaging those may have been for me. I also am cutting back on a few supplements that have microcrystalline cellulose (corn?), since that was a 3+ for me. I am also aware now that bone broth was not helping, but hurting the overall irritation and triggering (chicken was a 2+). I have been off those things, increasing Zinc to twice a day and overall feel almost 100% better, with completely different/ consistent daily stool and no fatigue. (I did find out that Turkey is not a possibility for me-- two disastrous days after that experiment!)
Seafood, steamed veg and yuca and cashews/ cashew milk are working well, along with olive oil, coconut, roasted parsnips, sweet potatoes and sometimes turnips.
I am hoping that with continued healing I will be able to add more things in?

I am awaiting a pancreas elastase and a few other 'markers' to determine how much is inflammation and how much is pancreas function issues... and also to fine-tune a possible probiotic regimen (will be cautious with that.)

I am also going to contact my dentist tomorrow to find out if my dental guard, which I have had for the last 5 years for teeth grinding, contains gluten. I found journal articles and info online that some contain a plastic that includes gluten additives. It has been known to keep some with Celiac in an inflammatory state-- it would be crazy if that would be my cause, but I'm committed to finding any hidden sources and getting rid of them at this point.
Grateful to be feeling better and have a few more clues under my belt as I travel this path...

Again, I hope you are well and thanks so much again for the insight.
Take care!

Jacqueline,

You're very welcome. And thanks, I'm doing fine so far, continuing to maintain a low profile.

Thank you for pointing out your issue with turkey. Sensitivity to turkey is very rare. I've been telling everyone that it's safe for all. I wonder if that turkey might have had an issue such as rosemary extract (the extraction process is usually done using soy oil), or some other source of contamination.

Covid-19 cases in Texas took off as soon as the Governor began allowing businesses to reopen. Too many people ignore the rules. I believe you're right about younger people. Texas is beginning to close the parks and beaches again, because when they're open, they're filled with young people who tend to ignore the distancing and mask rules. After trying raised limits for only about a week, restaurants are back down to 50 % capacity again, and bars are closed (again). The TV news in Austin announced that last weekend about a hundred high school students had held a "secret" party at a lake, and now authorities are trying to track them and their contacts down, because some of them have tested positive. Many hospitals are very close to the limit (for ICU beds and ventilators) and we'll probably blow past that limit this week at the current rate of infection. It doesn't look good. Even way out here in the country, we have neighbors who have Covid-19.

Your pancreatic test results will probably indicate pancreatic inflammation because IMO many of us have inflammation (and consequently lowered enzyme production) for numerous digestive organs after we have had digestive system inflammation for a significant length of time. Usually, the problem is resolved as we get our MC (and the inflammation) under control.

Good detective work on the dental guard. It's certainly possible that it might be contaminated. The things we're exposed to every day are almost always the biggest challenges we face (for maintaining remission) because we trust them, so we often fail to even consider them as risks.

Thanks — I appreciate your insight, also.

Tex

Hi Jacqueline,

I'm glad your energy is better!

My Mom is 84 years old and is celiac. She does not have MC. My n=1 experiment with Mom and my theory is that it is tougher for celiacs to put on weight depending upon how nub like their villae are. Mom eats a large breakfast, a large lunch and an average
size dinner but her weight maintains at around 120 pounds. She eats way more calories than most 84 year olds.

I have confidence that you will gain weight but it may take time. As you heal it will be easier to put on weight.

Brandy.

Seafood, steamed veg and yuca and cashews/ cashew milk are working well, along with olive oil, coconut, roasted parsnips, sweet potatoes and sometimes turnips.

This sounds tasty!

Hello Jacqueline,

Looks like your test results are similar to mine. I just retested this month after 6 years and my results are much worst now after 10 years of gluten free diet and 6 years of dairy, soy free diet.
I am so confused. My fecal fat score is 711, Anti-gliadin IgA 154, Anti-casein IgA 24, egg IgA 20, soy IgA 42; Mean value 17 units
There are no foods to which there was no significant immunological reactivity. 1+ for oats, pork, almonds, cashew and white potato, 2+ corn, rice, tuna, beef, 3+ chicken, walnut

Like you I am cooking all of my own foods, have been eating mostly lamb and turkey, home made bone broth, white potatoes, carrots, bananas and like you lots of white rice which I thought was fine.
I can't get out of the CC flare up since the middle of March. I am underweight at 114lbs and unable to gain any weight.

Did you stop eating all the foods listed by EnteroLab?
I think I need to stop all the foods listed but it is overwhelming and I feel very stressed and unsettled about these new results.

Warm regards,
Ania