Just got back from my follow up with my GI and the result from the biopsies showed no problems (also, my one polyp was benign and no visible signs of colitis, diverticulitis). Here I was on this site chatting away like I had MC.
My GI is still concerned, however, because of the ongoing weight loss and the anemia. I am now going to get a CAT scan and more blood tests to check for another malady. Seems the concern is maybe my small intestine, liver or pancreas. Can celiac sprue cause D without MC? I was checked for MS a couple of months prior to the D because of sudden peripheral neuropathy and got a clean bill of health there.
I'm wondering; if this D and weight loss was a medication induced MC and my last medication was a 6 day course of Cipro and Flagyl 4 weeks before the colonoscopy, could that be long enough to significantly reduce the lymphocytes and/or collagenous laminates? Maybe clear it up enough to be undetectable on a biopsy?
Can inflammation continue for a long time after the signs of LC or CC are no longer detectable? I had stopped all other medication 11 weeks before the colonoscopy and went gluten free around 5 weeks before the colonoscopy. Before all this started I only occasionally, deliberately, ingested gluten (e.g. pizza with my brother once every few months, donuts at work roughly once a month). The WD cleared up several weeks ago (start of Aug - it's now mid Sept) - now I am going once a day with a mostly formed, mushy stool.
Baffling!
John R.
Apparently, I'm a Fraud (sorry)
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Re: Apparently, I'm a Fraud (sorry)
John,
Both celiac disease and microscopic colitis are not actually diseases, but symptoms of gluten sensitivity. Celiac disease mostly affects the small intestine, and microscopic colitis mostly affects the large intestine, otherwise, they are very similar. It's possible, in fact it's somewhat common, for celiacs to be asymptomatic. Likewise, a small percentage of MC patients sometimes have periods of spontaneous remission. It's somewhat common for doctors to miss a diagnosis (that is fail to diagnose) of either disease. Obviously, something caused your symptoms. At least 12 different kinds of microscopic colitis have been described in the medical literature. Most doctors are aware of only two, lymphocytic colitis and collagenous colitis.
Enjoy your remission while it lasts. Of course, since your stools are not actually normal, you're not actually in remission, although your symptoms have backed off significantly. Hopefully you'll find out more about your actual situation, eventually.
Tex
Both celiac disease and microscopic colitis are not actually diseases, but symptoms of gluten sensitivity. Celiac disease mostly affects the small intestine, and microscopic colitis mostly affects the large intestine, otherwise, they are very similar. It's possible, in fact it's somewhat common, for celiacs to be asymptomatic. Likewise, a small percentage of MC patients sometimes have periods of spontaneous remission. It's somewhat common for doctors to miss a diagnosis (that is fail to diagnose) of either disease. Obviously, something caused your symptoms. At least 12 different kinds of microscopic colitis have been described in the medical literature. Most doctors are aware of only two, lymphocytic colitis and collagenous colitis.
Enjoy your remission while it lasts. Of course, since your stools are not actually normal, you're not actually in remission, although your symptoms have backed off significantly. Hopefully you'll find out more about your actual situation, eventually.
Tex
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.
Re: Apparently, I'm a Fraud (sorry)
Yes, I agree that I am not in remission and I am not convinced I don't have some form of MC. I have no plans to discontinue my diet (pork, lamb, sweet potatoes and bananas, occasionally beef), it isn't a bad diet, except for the dearth of eggs.
I'll go through with the CAT scan and blood tests just to make sure it is not something else.
John R.
I'll go through with the CAT scan and blood tests just to make sure it is not something else.
John R.
Re: Apparently, I'm a Fraud (sorry)
John,
I don't remember if you're using an elimination diet, or a recovery diet based on EnteroLab results, but if you're on an elimination diet, you should be able to safely test chicken eggs after you're in remission, to see if they can add them back into your diet. To test them, try a little one day, and a little more the next day, and a still larger helping the third day. If you don't react to them after the third day, you should be able to safely add them back into your diet. If chicken eggs don't work, wait a few days to settle down again, and then test duck eggs.
A biopsy from a normal colon will usually show 5 to 7 lymphocytes per 100 epithelial cells. The diagnostic minimum for lymphocytic colitis is 20 or more lymphocytes in the same area. The range in between those limits is undefined, as far as most gastroenterologists are aware. But if you happen to have paucicellular lymphocytic colitis, or microscopic colitis NOS (not otherwise specified), for example, the lymphocyte count could be anywhere in that "undefined" range. That doesn't seem to be on the radar for most pathologists, so therefore, it isn't on most gastroenterologists' radar, either.
Tex
I don't remember if you're using an elimination diet, or a recovery diet based on EnteroLab results, but if you're on an elimination diet, you should be able to safely test chicken eggs after you're in remission, to see if they can add them back into your diet. To test them, try a little one day, and a little more the next day, and a still larger helping the third day. If you don't react to them after the third day, you should be able to safely add them back into your diet. If chicken eggs don't work, wait a few days to settle down again, and then test duck eggs.
A biopsy from a normal colon will usually show 5 to 7 lymphocytes per 100 epithelial cells. The diagnostic minimum for lymphocytic colitis is 20 or more lymphocytes in the same area. The range in between those limits is undefined, as far as most gastroenterologists are aware. But if you happen to have paucicellular lymphocytic colitis, or microscopic colitis NOS (not otherwise specified), for example, the lymphocyte count could be anywhere in that "undefined" range. That doesn't seem to be on the radar for most pathologists, so therefore, it isn't on most gastroenterologists' radar, either.
Tex
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.
Re: Apparently, I'm a Fraud (sorry)
I have not gone through with the EnteroLab panels yet. I based my elimination diet on the examples that people on this site have posted as well as the lists of problem foods/medications found here as well. I thought the best definition of remission I've seen on this site is when you are back to where you were before the flare, and until I am there for a while I was not going to add anything, with the exception of vitamin D3, topical magnesium and Blackstrap Molasses (thought I may have had a slight reaction to the molasses but then I recently read where the sealing glue on envelopes contains gluten - I had licked some envelopes two or three days before that reaction).
Tex, I apologize if I came across as skeptical in my first post on this thread, I am anything but skeptical about the knowledge available here - everything in your book and on this site has rung true with my own experience as well as the other literature I have read raising the alarm on gluten and soy (and sugar). I was just so sure the labs from the biopsies would diagnose LC or CC and it threw me for a loop when they did not.
I have been rereading "Microscopic Colitis" and your chapter on diagnosis (chapter 3) points out how the inflammation in the colon can be patchy and thus missed by the gastroenterologist. So I'm thinking either that or I have one of the far less well known colitis's that you mentioned. The diet continues.
John R.
Tex, I apologize if I came across as skeptical in my first post on this thread, I am anything but skeptical about the knowledge available here - everything in your book and on this site has rung true with my own experience as well as the other literature I have read raising the alarm on gluten and soy (and sugar). I was just so sure the labs from the biopsies would diagnose LC or CC and it threw me for a loop when they did not.
I have been rereading "Microscopic Colitis" and your chapter on diagnosis (chapter 3) points out how the inflammation in the colon can be patchy and thus missed by the gastroenterologist. So I'm thinking either that or I have one of the far less well known colitis's that you mentioned. The diet continues.
John R.
Re: Apparently, I'm a Fraud (sorry)
Hi John,
Generally anemia is much less common in men than women. Understand anemia can be a symptom of celiac sprue.
I'm assuming you were using the blackstrap for the anemia? When you feel you are sufficiently healed to take a supplement I found the proferrin iron really helps me to bring up my ferritin scores. It was the only iron supplement that I could tolerate. It is made from centrifuged cows blood. I take the supplement with a meal. The down side is that it is kind of pricey.
Generally anemia is much less common in men than women. Understand anemia can be a symptom of celiac sprue.
I'm assuming you were using the blackstrap for the anemia? When you feel you are sufficiently healed to take a supplement I found the proferrin iron really helps me to bring up my ferritin scores. It was the only iron supplement that I could tolerate. It is made from centrifuged cows blood. I take the supplement with a meal. The down side is that it is kind of pricey.