Can Collagenous Colitis go away?

[rhart]

I was originally diagnosed with collagenous colitis about 7-8 years ago. I have controlled it with a gluten free diet, various drugs from my gastro doc, and Pepto Bismol tablets. About 3 months ago, I started having more abdominal pain, lower back pain, and fibromyalgia pain. My gastro doc decided I needed another colonoscopy. He did a biopsy like he did in previous colonoscopies. The test came back normal and they said I don't have CC anymore!

Can it just go away? Why would my symptom be so much worse and me not not have it anymore? I am so confused!!

[tex]

Why would my symptom be so much worse and me not not have it anymore? I am so confused!!

Hi,

Since this is your first post -- welcome to the board.

The answer to your question is not simple. CC is forever, so you still have it. It can go into remission, but it is always there, waiting for us to slip up on our treatment. The reason why your GI doc and pathologist can't find it is probably because the diagnostic criteria for the disease are poorly defined. A normal colon has collagen bands approximately 3 to 5 microns in thickness. If the collagen bands exceed 10 microns, CC is indicated. The problem is, when we follow a proper diet, the inflammation subsides, and the collagen bands begin to shrink. The range from 5 to 10 microns is uncharted waters, and that's probably what your biopsy samples show. IOW, your collagen bands are not thick enough for an official diagnosis, but they're still too thick to be normal.

Your disease is obviously still active, (as indicated by your symptoms), but your doctor has no formal way to diagnose it, due to problems with the description of the diagnostic criteria.

I wonder if the pathologist even bothered to do a lymphocyte count. If he or she didn't, then the CC may have segued into LC, and they missed it. The lymphocyte criteria is another disaster. A count over 20 indicates LC. The problem is that a normal colon typically has from 5 to 10 lymphocytes per 100 enterocytes. The range from 10 to 20 is no-man's-land, because it's too low for an official diagnosis, and it's too high to be normal. Paucicellular lymphocytic colitis falls into this range, but virtually none of the GI docs are familiar with it. In fact, most of them have never heard of it. If everything else checks out OK, ask your GI specialist to look up paucicellular lymphocytic colitis. It may explain why they missed your diagnosis.

Or, you may have an elevated mast cell count (mastocytic enterocolitis). 70% of us do, but pathologists almost never bother to do a mast cell count on biopsy samples, unless the GI doc requests it, and GI docs almost never request it. IOW, they are blissfully ignorant of the existence of mastocytic enterocolotis unless the patient insists on requesting that a mast cell count be made.

Ask your doc to request that the pathologist reexamine your biopsy samples, after staining them with a tryptase-based stain to make the mast cells more easily visible. Since you've been faithful to the diet and yet you seem to be developing one or more additional autoimmune diseases, this suggests that you may possibly have either mastocytic enterocolitis or mast cell activation disorder (MCAD), either of which adds another level of complexity to MC.

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

Tex

[rhart]

Thanks for the prompt reply. I'm afraid the doc won't continue to treat me for it. I have had little help from any of the drugs given me, or just temporary relief. I know I'm very sensitive to gluten. In fact, I'm probably intolerant to other foods, but don't know what they are. In the past, using an ALCAT test, I was found sensitive to 12 different foods. I took them from my diet for 2 years. Gluten was not on the list, but wheat and rye were. This was before my CC diagnosis. I was also on a candida free diet. It took me 20-30 years to get my diagnosis! And, yes, I do have other autoimmune diseases, like fibromyalgia.

I will print your reply out and take it with me next week.

[MBombardier]

Welcome! I have CC, too. I was blind-sided by this diagnosis, having expected a clean bill of health. I didn't even know the GI doc was going to check for anything. Over time, I have concluded (based on a gene test, and further symptoms) that I probably have celiac disease and mast cell involvement. I treat myself with diet modification alone. It's not perfect, but I have had symptom-free times, have been able to add back foods into my diet, and rarely deal with CC-related fatigue, joint/muscle pain, brain fog, etc. I am getting better.

I hope you will spend time reading the wealth of information on the forum. There are lots of people here with lots of good knowledge found on their own journeys to health, and Tex is our hero.

Welcome again, and if you can't find something, or don't understand something, please feel free to ask. And if you need to rant and rave, or cry, we're here for that, too. We've all been there.

[tex]

Regarding identifying other food sensitivities, roughly 80 to 85 percent of those of us who are gluten-sensitive are also sensitive to casein (the primary protein in all dairy food). Slightly over half of us are sensitive to soy and all legumes. A much lower percentage of us are also sensitive to eggs, corn, or various other proteins.

If I were in your shoes, I would cut out dairy and soy for a week or two, and see if that clears up or at least reduces the intensity of your symptoms. if it does, then you can try adding them back into your diet, one at a time, to see if one or both of them are problems.

Tex

[rhart]

A couple years ago, I did take diary out of my diet for a couple months. I didn't notice any difference. I hardly ever eat soy products, but I do eat legumes on a regular basis. I know I have to do something. I have been thinking of trying the dairy again, but honestly don't think it is the problem. I am a registered sanitarian, profession wise, and a foodie, hobby wise. I am very careful about what I eat, so figuring this out shouldn't be too hard. I just have to do it.

I know a cousin of mine is currently following a paleo diet. I saw where some on this group are following that, also. I'll look into that, too.

Lately, besides the normal colitis symptoms, I've been having a constant feeling of fullness. Due to that feeling, I've been eating very little. It doesn't seem to matter what I eat. That feeling is with me all the time. Along with it I've been having major lower back pain and sciatica. Does anybody else have these symptoms associated with a spinal stenosis? I was diagnosed with that several years ago and have constant back pain, but not as bad as it has been recently. It seems the worse my back hurts, the worse my colon hurts! I wish I could get 1 doctor to listen to me and put it all together!

[tex]

Yes, lower back pain seems to be fairly common with this disease, and I'm surprised that spinal stenosis is mentioned more often than I would expect. I have lower back issues myself, but I've never pursued any type of diagnosis, because I doubt that much could be done about it anyway. Sciatica has been a problem for several other members, also, but usually on a temporary basis. Though it isn't often mentioned, and I doubt that many GI specialists even realize it, CC is a connective tissue disease, by definition, (FWIW).

I'm convinced that you're right about the back problems being connected with the GI issues. Before I was able to get my GI issues under control, my back/spinal problems were almost constant. Compared with that, my back problems are minimal, now.

A few EnteroLab tests could remove any questions about food sensitivities.

Tex

[rhart]

What tests do I ask for? I know a number of people on another support group have used their tests, but I didn't know what I needed.

I did some research today and I agree I may have mastocystic enterocolitis. I have had pressure urticaria for years and though I have told various doctors, they just disregarded it. It all fits with the joint pain, too. And I had sinus problems for years. This got better with the GF diet, but I still have seasonal allergies. I'm definitely going to insist on the other tests now!

[tex]

The most likely food sensitivities after gluten are casein (dairy), soy and egg, in that order.

Tex

[mrigden]

MBombardier
Hello Marliss,

I just discovered this forum while researching treatments for CC. I've used Entecort but want to find more natural treatments. I was struck by your following comment "and rarely deal with CC-related fatigue, joint/muscle pain, brain fog, etc. "
I have these same symptoms but have considered them side effects of Type 1 diabetes. I would appreciate pointers to any documentation on these as side effects of CC so that I can discuss with my GI and diabetologist.

regards,
Mike

[tex]

Hi Mike,

Welcome to the board. This thread is 8 months old, and Marliss hasn't been posting regularly, lately, so she may not see your post. I'll try to address your question.

Anti-inflammatory drugs can suppress inflammation, but they cannot prevent it from redeveloping. You've probably noticed that when you discontinue the drugs, your CC will relapse. That's because the inflammation is being regenerated, by either drug sensitivities or food sensitivities. When the genes that predispose to MC (or LC or CC) are triggered, genes that predispose to certain food sensitivities are also triggered at the same time. MC symptoms can be perpetuated by sensitivities to drugs, or to certain foods. To cut to the chase, the key to remission with or without drugs, is to eliminate problem drugs and problem foods from our diet. When we eliminate the source of the inflammation, then after our gut heals, the disease will go into remission.

As far as rigid medical studies are concerned (that is, research based on random, double blind protocol), I'm not aware that any exist, that show that MC causes those symptoms (fatigue, pain, brain fog, etc.), and frankly, I doubt that any such studies will ever be undertaken. That's why most GI docs aren't even aware that they're associated with MC. IOW, without rigid documentation, they just assume that it doesn't exist. The only data available involve epidemiological evidence, such as the combined experiences of the members of this discussion board. Trust me, those are common symptoms with MC, and if you're wondering if I'm qualified to make such a statement, let's just say that I wrote the book on Microscopic Colitis (because I actually did. LOL.)

Incidentally, you might be interested in the following quote from chapter 16 of the book:

Let’s consider, for example, how this applies to diabetes mellitus
Research done as far back as 1997 and published in 1999 showed that type 1 diabetes is clearly associated with increased intestinal permeability.34 Research data that were published in 2004 showed that type 1 diabetes could be prevented simply by eliminating or preventing increased intestinal permeability.35 In 2009, research revealed that one or more of the peptides in the gluten molecule appears to be a factor in the development of type 1 diabetes, and Visser et al. (2009) hypothesized that increased intestinal permeability is essential to the development of autoimmune disease.4 Clearly, if it can be validated, that’s a very profound observation, with far-reaching implications.

So now we have to ask, “Are mast cells also involved in the development of diabetes mellitus?” And the answer, of course, is “Yes”. While experiments with human subjects haven’t been done, research using rats and mice clearly shows that mast cells are involved in the development of diabetes.36, 37 It's well known that Type 1 diabetes is associated with gluten-sensitive enteropathy, so the discovery of a mast cell connection is a logical extension of that association, given the information in this chapter. Research done by Liu et al. (2009) suggests that obesity can even be reduced by using a treatment to stabilize mast cells, to prevent their inappropriate degranulation.37

And other research shows that the final link, stress, is clearly implicated as a factor that drives blood sugar excursions that can lead to insulin resistance and the development of diabetes.38, 39 In addition, Wellen and Hotamisligil (2005) discuss mechanisms by which inflammation may lead to obesity, and this was verified by Liu et al. (2009), as mentioned above. The bottom line is that all of the components of my theory are present in the development of diabetes mellitus.

Here are the references associated with that quote:

4. Visser, J., Rozing, J., Sapone, A., Lammers, K., & Fasano, A. (2009). Tight junctions, intestinal permeability, and autoimmunity: celiac disease and type 1 diabetes paradigms. Annals of the New York Academy of Sciences, 1165(1), 195–205. doi:10.1111/j.1749-6632.2009.04037.x

34. Carratù, R., Secondulfo, M., de Magistris, L., Iafusco, D., Urio, A., Carbone, M. G., . . . Prisco, F. (1999). Altered intestinal permeability to mannitol in diabetes mellitus type I. Journal of Pediatric Gastroenterology & Nutrition, 28(3), 264–269. Retrieved from http://journals.lww.com/jpgn/Fulltext/1 ... in.10.aspx

35. Fasano, A., Watts, T., Sapone, A., & Zielke, R. (2004). P0086 Pp Zonulin-Dependent Increased Intestinal Permeability Is Involved in the Pathogenesis of Type 1 Diabetes and Can Be Blocked to Prevent the Onset of the Disease. Journal of Pediatric Gastroenterology & Nutrition, 39(1), S89–S90. Retrieved from http://journals.lww.com/jpgn/Fulltext/2 ... l.210.aspx

36. Geoffrey, R., Jia, S., Kwitek, A. E., Woodliff, J., Ghosh, S., Lernmark, A., . . . Hessner, M. J. (2006). Evidence of a functional role for mast cells in the development of type 1 diabetes mellitus in the biobreeding rat. The Journal of Immunology, 177(10), 7275–7286.Retrieved from http://www.jimmunol.org/content/177/10/7275.full

37. Liu, J., Divoux, A., Sun, J., Zhang, J., Clément, K., Glickman, J. N., . . . Shi, G-P. (2009). Genetic deficiency and pharmacological stabilization of mast cells reduce diet-induced obesity and diabetes in mice. Nature Medicine, 15(8), 940–945. doi:10.1038/nm.1994

38. Lloyd, C., Smith, J., & Weinger, K. (2005). Stress and diabetes: A review of the links. Diabetes Spectrum, 18(2), 121–127. doi:10.2337/diaspect.18.2.121

39. Wellen, K. E., & Hotamisligil, G. S. (2005). Inflammation, stress, and diabetes. Journal of Clinical Investigation, 115(5), 1111–1119. doi:10.1172/JCI200525102

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

Tex

[rhart]

Since I last posted, I have had continuous problems. Since I have been determined "free" of CC, the GI started concentrating on other parts of my digestive system. I can't say nothing was going on. I had my appendix out in October 2011 and my gall bladder July 2012. But I now face constant nausea, pain in my left side, and of course, the dreaded D word! I have had every test in the world, even for mast cells (negative). I had 2 tests that showed insufficient pancreatic enzymes and was put on enzymes. Within a week, I had missed work, then developed hives! They are from a pork source and it seems I have now developed a sensitivity to pork! Sounds like a permeable bowel to me! But the GI seems to not be able to find me any help.

The only thing that seems to help is fiber in the form of psyllium seed and konjac with my meals, and the addition of ginger. That (the ginger) actually stopped the D for awhile! But the back pain is becoming debilitating. And it still gets worse when the gut is acting up. And at Christmas, I got what I believe was norovirus. That started all the symptoms up and they won't stop. I'm now contemplating early retirement to get away from the stress of work. I'm on a whole new bunch of medication for arthritis pain and mostly nothing for the abdominal problems. I have taken dairy from my diet (no change again) and pork, but no changes. I'm not sure I can stick to a paleo diet with everything else going on in my life.

[Zizzle]

I'm on a whole new bunch of medication for arthritis pain

What kinds of meds are you on for the arthritis? MCers can't take NSAIDS, so I'm curious about what you are able to take and tolerate. Maybe the meds are causing your GI trouble?

[rhart]

I'm currently on Voltaren, Lyrica and Norflex and have been for about 7 years. Yes, Voltaren is an NSAID, but I did quit taking it last year for a couple weeks and noticed no difference. I did hurt worse! These haven't been helping much recently. So, I'm now taking hydroxychloroquine. Was also taking Cymbalta for fibromyalgia, but after 1 month quit because I was constantly sleepy. The only thing I'm taking Med wise for my digestive problems is ranitadine and Bella-phenobarb. I'm not supposed to go back to my GI for another 4 months because the last time I saw her, I was more or less doing OK. She wanted me to go on a proton pump inhibitor, but I refuse because I already don't have enough calcium in my bones! Today has been awful. I can hardly move and the D has been bad. Work was almost impossible. Thankfully, I got to sit n front of a computer today and didn't have to go out and inspect.