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Hi Everyone,
I took Entocort last Spring and it worked really well. I've been feeling pretty good since then except that I seem to have fallen into a pattern of feeling horrible every winter, especially when I come back from my annual trip to see my family, and it either seems to take a month or so to get better or gradually turns into the full watery diarrhoea thing.
I'm completely exhausted, and I've got back and hip aches, my muscles feel weak and my eyes are burning. I'm casting around, thinking is it vitamin D, magnesium, potassium, B12, thyroid, etc etc, or some dietary thing? I'm mostly paleo except a little dairy. Is it accidental gluten when traveling? My bowels are a little off, but not too bad.
I searched the site and it seemed lots of people have the fatigue, aches etc and relate it to gluten. I wondered, if you accidentally eat gluten after being off it for a long time, what happens to you, and how long does it last? Or is there something else that triggers recurrence of the achy fatigue?
Thanks for any help!
Binky
Fatigue and aches and pains
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Binky,
I tend to flare in the winter more too. Like you I travel every Christmas and it triggers something. Vitamin D may play a role, as well as stress and accidental glutening. When I get glutened I feel it within about 6-8 hours and I stay achy for a few days. Many of us have noticed a seasonal problem.
Mary Beth
I tend to flare in the winter more too. Like you I travel every Christmas and it triggers something. Vitamin D may play a role, as well as stress and accidental glutening. When I get glutened I feel it within about 6-8 hours and I stay achy for a few days. Many of us have noticed a seasonal problem.
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
Hi Binky,
Sorry to see that you're having relapse problems. There is a good chance that vitamin D does play a role in wintertime flares, because research shows that Crohn's disease causes malabsorption of vitamin D, and presumably so do the other IBDs. And, conversely, low vitamin D levels make one more susceptible to developing an IBD, or experiencing a flare.
We seem to do best if we keep our 25(OH)D level above about 30 ng/ml, (and preferably up around 50 ng/ml). One member, who was diagnosed with Crohns and MC simultaneously, found that his 25(OH)D level was 2, and he is having some difficulty pushing it up to where he wants it, though he is making steady progress. If you are sensitive to it, (and most of us on this board are), casein, (in all dairy products), can cause basically the same symptoms as gluten sensitivity. Incidentally, casein sensitivity can sometimes present as constipation, for the GI portion of the reaction, and it often exacerbates classical allergy symptoms. IOW, if allergy symptoms seem to be worse, casein might be a prime suspect.
Regarding the way that gluten affects us after we avoid it for a significant period of time - our immune system seems to be more sensitive to it, after the antibody level has had time to decline. It seems as though the threshold for a minimum dose that causes a reaction, may be lowered, but I'm not aware that this has ever been confirmed by any research, (or even investigated, for that matter).
Also, as you mentioned, many of us tend to be deficient in magnesium, and the "B" vitamins, especially B-12, which may contribute to some of the symptoms that you listed. We have to be careful with magnesium supplements, though, because of the laxative effect. Some members use a topical spray supplement, for a transdermal treatment.
Another possibility is soy, but you may already be avoiding it if you are on the paleo diet. Over half of us are sensitive to soy, and it is ubiquitous in processed foods these days. For those who are sensitive to it, it seems to cause worse symptoms than gluten.
Food sensitivities can be very tough to avoid, when traveling, obviously. Considering the winter pattern of your issues, though, I would definitely suggest checking your 25(OH)D level.
Tex
Sorry to see that you're having relapse problems. There is a good chance that vitamin D does play a role in wintertime flares, because research shows that Crohn's disease causes malabsorption of vitamin D, and presumably so do the other IBDs. And, conversely, low vitamin D levels make one more susceptible to developing an IBD, or experiencing a flare.
We seem to do best if we keep our 25(OH)D level above about 30 ng/ml, (and preferably up around 50 ng/ml). One member, who was diagnosed with Crohns and MC simultaneously, found that his 25(OH)D level was 2, and he is having some difficulty pushing it up to where he wants it, though he is making steady progress. If you are sensitive to it, (and most of us on this board are), casein, (in all dairy products), can cause basically the same symptoms as gluten sensitivity. Incidentally, casein sensitivity can sometimes present as constipation, for the GI portion of the reaction, and it often exacerbates classical allergy symptoms. IOW, if allergy symptoms seem to be worse, casein might be a prime suspect.
Regarding the way that gluten affects us after we avoid it for a significant period of time - our immune system seems to be more sensitive to it, after the antibody level has had time to decline. It seems as though the threshold for a minimum dose that causes a reaction, may be lowered, but I'm not aware that this has ever been confirmed by any research, (or even investigated, for that matter).
Also, as you mentioned, many of us tend to be deficient in magnesium, and the "B" vitamins, especially B-12, which may contribute to some of the symptoms that you listed. We have to be careful with magnesium supplements, though, because of the laxative effect. Some members use a topical spray supplement, for a transdermal treatment.
Another possibility is soy, but you may already be avoiding it if you are on the paleo diet. Over half of us are sensitive to soy, and it is ubiquitous in processed foods these days. For those who are sensitive to it, it seems to cause worse symptoms than gluten.
Food sensitivities can be very tough to avoid, when traveling, obviously. Considering the winter pattern of your issues, though, I would definitely suggest checking your 25(OH)D level.
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.
Thanks for the replies and advice Mary Beth and Tex. I've had Vit D levels checked before and they've been 20-30. I've taken the 50,000 units weekly before and it's really helped with muscle weakness. At the moment I'm taking D drops and playing it by ear, as I feel like it's probably low again.
I have another question, if you don't mind, as you are all so knowledgeable here.
I did Enterolab tests 6 years ago and at that time had fatty D and lots of weight loss. I had negative celiac blood tests but Enterolab abs for gluten, casein and soy were all positive, about 50. I stopped eating gluten and later stopped casein and soy for a year or so. HLAs were DQ2 and 7, I think. At that time I had quite a high score for fat malabsorption, which later improved. I got better, but not completely, and after maybe 3 years I started getting much more frequent diarrhoea, up to 30 times a day, but with watery instead of fatty stools, and with no weight loss. That was when I was diagnosed with CC. I wish I'd checked the Enterolab malabsorption score again. My question is, what kind of numbers do people with CC usually have for fecal fat from Enterolab? Does MC cause fat malabsorption?
I'm wondering about these things because I'm seeing oil again, and have lost a couple of pounds. It makes me think gluten. This might be wishful thinking though, hoping it's a one off gluten thing, which will pass.
Tex, I was last here about a year ago and I've been feeling guilty about the dairy ever since! It seems to be the most difficult thing to give up for me. I go round the houses with no lactose or goat's milk, and at the moment I'm eating 24 hour yoghurt and creme fraiche but am thinking about giving it up.
Thanks,
Binky
I have another question, if you don't mind, as you are all so knowledgeable here.
I did Enterolab tests 6 years ago and at that time had fatty D and lots of weight loss. I had negative celiac blood tests but Enterolab abs for gluten, casein and soy were all positive, about 50. I stopped eating gluten and later stopped casein and soy for a year or so. HLAs were DQ2 and 7, I think. At that time I had quite a high score for fat malabsorption, which later improved. I got better, but not completely, and after maybe 3 years I started getting much more frequent diarrhoea, up to 30 times a day, but with watery instead of fatty stools, and with no weight loss. That was when I was diagnosed with CC. I wish I'd checked the Enterolab malabsorption score again. My question is, what kind of numbers do people with CC usually have for fecal fat from Enterolab? Does MC cause fat malabsorption?
I'm wondering about these things because I'm seeing oil again, and have lost a couple of pounds. It makes me think gluten. This might be wishful thinking though, hoping it's a one off gluten thing, which will pass.
Tex, I was last here about a year ago and I've been feeling guilty about the dairy ever since! It seems to be the most difficult thing to give up for me. I go round the houses with no lactose or goat's milk, and at the moment I'm eating 24 hour yoghurt and creme fraiche but am thinking about giving it up.
Thanks,
Binky
The test result numbers tend to vary all over the place, and since there doesn't seem to be any correlation with the severity of clinical symptoms, we haven't been separating the results in our database, with regard to the various types of MC. I believe that Dr. Fine once commented that the high test results for anti-gliadin antibodies, (I'm thinking several hundred or so), may correspond with celiac disease, (but I could be wrong about that). Fecal fat scores are usually low for the members of this board, with occasional exceptions. For those members with fecal fat scores over 1000, it appears that some have a celiac gene, while some do not.Binky wrote:My question is, what kind of numbers do people with CC usually have for fecal fat from Enterolab? Does MC cause fat malabsorption?
In case you haven't come across our test results, they are tabulated here:http://www.perskyfarms.com/phpBB2/viewtopic.php?t=10089
Yes, MC can cause fat malabsorption issues, which disappear as remission is attained, of course. Since high fecal fat scores relate to small intestinal damage, I often wonder if individuals with relatively high anti-gliadin test results, and high fecal fat scores, might actually have celiac disease, as well as MC. I note that you have a copy of the most common celiac gene, as well.
FWIW, it's claimed that for someone who is casein-sensitive, casein can cause the same type of villus atrophy that gluten causes in the small intestine of celiacs, and of course, this can happen independently of classic celiac disease. If that's the case, then it's possible that this could be what is happening in your case, and as the damage continues to progress, your symptoms are becoming more pronounced, as your malabsorption issues continue to increase. A fat malabsorption test might be illuminating, but if you're already noticing oily stools, then the handwriting is on the wall, so to speak.
Yes, dairy is very difficult to give up, and it seems to be true that we crave the foods to which we are sensitive, unfortunately.
You're very welcome, and I hope that some of this is helpful,
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.