New MC dx -- yrs of issues -- Allergy/MTHFR/Cholecystectomy

[Permafrost]

I still have a lot of questions about biopsy results, diagnosis, and the way forward... but I'm getting treatment... sort of.

I'm military, so I feel like I need to tread carefully with how I proceed so that I don't find myself forced out the door (either out of the doctors door or out of a job entirely due to a diagnosis stating I can no longer serve) with a rushed diagnosis.

My GI has been VERY difficult to get a hold of. A biopsy was done months ago. Results were in to the GI clinic months ago as well. He never contacted me. I contacted him, left messages, no calls back. I started calling the 'accountability office' and I finally got a diagnosis of MC. When I asked the GI doc about it, he said collagenous. When the GI doc said this, over the phone, it seemed like it wasn't a true diagnosis so much as just throwing the words at me to appease me because I was seeking to hold the GI office accountable for their lack of communication. I have not met face to face with my GI since before the colonoscopy/biopsies. When I look at the biopsy (below), I get the impression of lymphocytic colitis and possibly something else that the oncologist is trying to allude to without diagnosing. I will see him later this month.

It's taken me around 5 years of suffering to get to the point of a diagnosis. It started with what I thought was lactose intolerance, led to the discovery of a large gallstone, then led to this with a doctor/clinic that is proving difficult to communicate with.

I'm looking to be an informed advocate for my health. Is there anything more specific I can ask him, to facilitate my treatment?

# Current treatments as per GI #
Budesonide 9mg for 8 weeks (currently about a week in)
FODMAP (this seems to help)
Previously tried as much as 10g of fiber per day (no real positive or negative difference, I don't think)

# Current treatments as per Allergist #
Allegra(Fexofenadine) h1 antagonist - 180mg x 2/day
Shots - Dust, Cats, Trees, Grass

# Personal Treatment Protocols #
For dehydration: Watered down Powerade
For osteoarthritis/tendonitis in lieu of NSAIDS: Arthromax Advanced: Glucosamine sulfate 2KCI (derived from corn) 1500 mg, AprèsFlex Indian frankincense (Boswellia serrata) extract (gum resin) [std. to 20% AKBAΔ (20 mg)] 100mg, UC-II standardized cartilage 40mg, Total Collagen 10mg, Boron (calcium fructoborate as patented FruiteX B OsteoBoron) 1.5mg
For management of BP so that it doesn't get to the point where I must be on statins or similar: Genius Heart - 300mg Pantesin pantethine, 300mg MegaNatural BP grape seed, 100mg of MicroActive coQ10, and 60mcg of MenaQ7 vitamin K2
For mood/focus (helps counter the mental crap MC does to me): Qualia or Qualia Mind - too many ingredients for simple listing, but I don't think there are any contraindications to my MC treatment
For gut/overall well-being: Garden of Life Probiotic Mood+ 50 Billion CFU, Magnesium Glycinate 400mg

FODMAP has helped a lot. Onion/garlic seem to be a very strong trigger. I don't think gluten is an issue (yet), but I haven't had enough time to figure this. Sandwhiches seem to pose no issue. Malty beer seems to pose no issue. However, hoppy beer does seem to cause a response, mostly in my sinuses.

# Future Considerations #
An H2 Antagonist?
Something for bone health due to budesonide - Mg, Ca, K2, D3?
L-Glutamine?

Previous blood tests
No pancreas/liver/kidney issues... and no food sensitivities.

Biopsy
The biopsy shows a mild increase in chronic inflammation in the colonic mucosa as well as prominent lymphoid aggregates with a pronounced mantle zone. There is polarization of the germinal centers.
B cells are positive for CD20 and are polyclonal for kappa and lambda and negative for BCL-1.
The T cells are positive for CD3.
These findings are consistent with benign lymphoid aggregate.
---
Antibody Probe --- results
BCL-1 --- Lymphoid cells negative, endothelial and epithelial cells positive
CD20 --- B-cells positive
CD3-Mono --- T-cells positive
CD43 --- T-cells positive, Plasma cells positive
KAPPA --- Plasma cells positive
LAMBDA --- Plasma cells positive

Methylation breakdown
MTHFR C677T hetero
VDR Bsm homo
MAO-A R297R homo
COMT V158M hetero
COMT H62H hetero
MTRR H595Y homo
MTRR K350A homo
CBS A360A hetero
ACAT1-02 hetero

[tex]

Hi,

Welcome to the group. First, thank you for serving in the military, and second, the shoddy treatment (or runaround, or whatever you choose to call it) you're receiving from your gastroenterologist is appalling. Civilian gastroenterologists also leave a lot to be desired when it comes to understanding MC, but at least they're willing to talk with a patient, even though they don't know much about successfully treating the disease.

I'm confused about your biopsy results. It appears they only took a single sample. Is the section you listed supposed to be associated with your CC diagnosis? I don't see anything that addresses the actual diagnostic markers of either LC or CC (lymphocyte count or collagen band thickness).

The FODMAP diet is similar to the diet we usually follow for treating MC. And you're certainly right that we have to use discretion regarding this disease in certain places. Most of us find ourselves in the uncomfortable position of knowing more about actually controlling this disease than our gastroenterologist, unfortunately, which makes dealing with them tricky at best.

Anyway, I'm glad you finally got a diagnosis, so at least you have some idea of what you are dealing with (rather than having the clinical symptoms and not knowing why).

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

Tex

[Permafrost]

Thank you for what you do for us, Tex.

Civilian gastroenterologists also leave a lot to be desired when it comes to understanding MC, but at least they're willing to talk with a patient, even though they don't know much about successfully treating the disease.

My current GI is also civilian, just working in a military facility.

I'm confused about your biopsy results. It appears they only took a single sample.

Me too! I've never been so over my head looking at medical information as I am now.

I wasn't awake for the procedure, but it's my understanding that biopsies were taken from a few areas. What I have is lab results performed by someone in a different state for the GI doc. The report states:
"Specimen: random colon
Gross Description: A: ([my name] -random colon biopsy) Received in formalin are multiple fragments of yellow-tan adipose tissue ranging in size from 0.2 to 0.4 cm in greatest dimension. The specimen is submitted in toto in cassette A1.
Final Diagnosis: Colon, Random, Biopsy: Mild Chronic Colitis with Benign Lymphoid Aggregates (see comment)."
The 'see comment' it references is what I put into my original post.

The diagnosis above is from oncology, as I understand it, before the lab results got to my GI's hands. In a phone call, my GI then relayed to me "MC". I had already seen the lab results, so I asked, "LC?" to which he responded "CC".

Is the section you listed supposed to be associated with your CC diagnosis? I don't see anything that addresses the actual diagnostic markers of either LC or CC (lymphocyte count or collagen band thickness).

These are good questions. I don't see anything that specifically implies LC or CC. What I do see is some sort of issue that possible crosses into tumor/lymphoma territory... unless someone has a better understanding of what this lab shows.

please feel free to ask anything.

My biggest questions are what I need to be able to speak to my GI doc intelligently. What you pose above is a good start for me. If anyone has anything else, I'm all ears.

I don't see the GI until 3 weeks from now, but I think I can go on base tomorrow to the Records people to make a lab results inquiry. I have 3 pages in front of me and they tell me nearly verbatim what I've relayed here. I can requisition more to see if I'm missing anything, but I think this is it.

[tex]

To indicate CC, there has to be a line somewhere in a pathology report stating increased collagen band thickness) in the lamina propria of at least one biopsy sample. Normal thickness is 10mm or less.

But that's all sort of irrelevant, anyway. The clinical symptoms are the same, and the treatment is the same for all types of MC.

Most GI docs don't look forward to questions about MC because they aren't likely to know the correct answers, anyway. And most GI docs seem to resent patients who know too much about a disease or who question the docs judgement or knowledge, but that's understandable. We've found over the years (from member experiences), that many GI specialists ignore or misinterpret what the pathology report actually says. But those are usually doctors who dispute the pathologist's diagnosis because the patient's colon looked normal through the scope.

Tex

[Polly]

Hi Permafrost,

If you have had a cholecystectomy, has anyone recommended a trial of cholestyramine, a bile binder? Many who have diarrhea after a cholecystectomy have found this med to be a lifesaver.

Polly

[Lilja]

Hi Permafrost,

You have come to the right place. This forum has helped me tremendously.

I just noticed your comment: For gut/overall well-being: Garden of Life Probiotic Mood+ 50 Billion CFU, Magnesium Glycinate 400mg.

Your intake of magnesium (glycinate, malate, threonate are all good ones) should be 10 mg per kilo body weight.

I have found it best to take several kinds of magnesium during the day.

Soaking your feet in magnesium sulfate (Epsom salt) for 30 min 2-3 times a week is also recommended.

Lilja

[Polly]

Hi Lilja!

Have you tried floating? We have a new spa nearby where one can float for 60-90 min. in an Epsom salt bath. I haven't tried it yet but it is supposed to be incredibly relaxing and rejuvenating.
The water is about 8 inches deep and due to the heavy salt content, you float on your back in it without sinking.

Polly

[Lisa_D]

Hi Permafrost,

I take Boswellia Serrata for my Lymphocytic Colitis and have found it to be helpful in managing the pain/cramps. However, I take a much higher dose (400mg 3 times a day). You may ask your GI if they recommend you increase the dose to help with Colitis symptoms as well.

Good luck!
Lisa

[Permafrost]

If you have had a cholecystectomy, has anyone recommended a trial of cholestyramine, a bile binder? Many who have diarrhea after a cholecystectomy have found this med to be a lifesaver.

Polly, my GI did mention it briefly pre-colonoscopy, but after the colonoscopy led to this diagnosis, the decision was straight to budesonide. I'll bring it up again because I don't want to assume budesonide is not working when it might be bile that is part of the problem too.

[Permafrost]

Your intake of magnesium (glycinate, malate, threonate are all good ones) should be 10 mg per kilo body weight.

Lilja, thank you for your post. I've done a lot of reading on the forums, but I didn't see that dosing. Is there a reference somewhere I can see so I can learn more? Based on this dosing, I'm at least 200mg too low.

I loved L-threonate, but I find it is a bit expensive. I still get 75mg 5x/week as it is included in the Qualia I take. Have you found an affordable blend? Or do you buy everything individually?

Soaking your feet in magnesium sulfate (Epsom salt) for 30 min 2-3 times a week is also recommended.

I've never considered this, but I'm willing to try anything!

[Permafrost]

I take Boswellia Serrata for my Lymphocytic Colitis and have found it to be helpful in managing the pain/cramps. However, I take a much higher dose (400mg 3 times a day). You may ask your GI if they recommend you increase the dose to help with Colitis symptoms as well.

Lisa, I found similarly high doses in my research in other places. I'm glad you've had success. I'll bring that up when I meet with my GI later this month, but I imagine he'll want nothing to do with it so we can see how the budesonide works on it's own. I'd love if it was something that could be prescribed!

[tex]

Polly, my GI did mention it briefly pre-colonoscopy, but after the colonoscopy led to this diagnosis, the decision was straight to budesonide. I'll bring it up again because I don't want to assume budesonide is not working when it might be bile that is part of the problem too.

I agree with Polly. Your GI doc may have made a bad decision when he decided to by-pass a trial with a bile acid sequestrant. Here's why that may be the case: a major problem with MC is that the inflammation compromises bile acid recycling. Normally, about 90 % of unused bile salts are recycled (they are reabsorbed in the terminal ileum). Absence of a gall bladder compounds the problem because bile is instantly released as it is produced, rather than being metered out as it is needed to digest a meal. You were probably already well aware of all this.

One of the reasons why budesonide is so effective for treating MC is because published research shows that cortisol regulates bile uptake. So in addition to decreasing inflammation by suppressing mast cell activity, budesonide assists in increasing bile acid recycling. That not only lessens the likelihood of diarrhea, but it also benefits nutrition by increasing fat absorption (rather than allowing the fat to be lost because of bile acid malabsorption (BAM). That suggests that a bile acid sequestrant might in some cases be a suitable substitute for budesonide, or alternatively, it might be useful as a supplement to budesonide to tie up the remaining bile acids so that they will be purged from the system (so that they can no longer contribute to diarrhea).

Control of bile reuptake by cortisol is a proven fact. The rest of the previous paragraph is my opinion, based on that fact. So please be aware of that if you decide to act on this.

Tex