Feel free to discuss any topic of general interest, so long as nothing you post here is likely to be interpreted as insulting, and/or inflammatory, nor clearly designed to provoke any individual or group. Please be considerate of others feelings, and they will be considerate of yours.
On the subject of mouth sores I have never had bad problems described by some, but I have had little rice sized pustules occasionally. They started a few months before chronic D set in so maybe there was a connection. After all I believe that the mouth is part of the GI tract.
Linda, you are probably right about not getting proper nutrition when MC is flaring. It is important to check your vit and mineral levels. I even have IV of vit and minerals having learned how low they were. Please ask any questions you like here and say anything you want to. Let us know more about you and your diagnosis if you want to. There are lots of people here to try and help.
Yes, mouth sores are a side effect of MC, and as Ant suggests, they are usually caused by a vitamin deficiency. Many/most of us with MC, have a malabsorption problem, causing malabsorption of fat and all fat-soluble vitamins, (which includes most of the "B" vitamins). The fact that an iron supplement seems to help, suggests that you are deficient in B-12, which is a very common problem with this disease. Most GI docs seem to be unaware of this problem, presumably because they don't learn in medical school, that MC can cause malabsorption issues.
Conventional vitamins are very poorly absorbed by patients with malabsorption problems, so many of us take sublingual lozenges, which are designed to be dissolved under the tongue, where they will be absorbed directly into the blood stream, thus bypassing the malabsorption issues in the intestines. In order for B-12 to be utilized by the body, an adequate supply of folic acid is necessary, so lozenges that contain a combination of B-12 and Folate, in a sublingual form, are ideal for this purpose. The sublingual form of B-12 is known as Methylcobalamin. (The cheaper, and less absorbable form is called cyanocobalamin.). I'm pretty sure that most of us are deficient in both B-12 and folic acid, if we have active MC, or celiac disease, and we are not taking sublingual supplements, or we are not getting monthly injections of those vitamins, from our doctor.
A deficiency of either B-12 or folic acid, can cause mouth sores:
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.
Yes, this was my first post, having just finally joined today, but I have popped in to read topics voraciously when ever I have had time for the last year or so, ever since I found this wonderful forum.
I hestitated to write my story as it's long (13 years worth!) and I have so little time for research on this as it is but will try to be brief. Thank you for the encouragement. It has taken me years to finally figure out that at least one of my "causes" is an allergy to casein, but the journey to finding that out was long, sad, convoluted and frustrating. If I had had a forum like this back then, I think years of my suffering could have been prevented. Bravo to you all for doing this!
I have never really been normal in my BM's vacillating between C and D, for most of my life. ( I was intrigued by a post by Tex that indicated this is often a precursor to MC or an alternative form of symptomology.) In 1997, a year or so after a devastating (to me) divorce, at 44 yrs., I suddenly developed non-stop diarrhea, with up 20 or 30 bm's per day. It was getting difficult for me to function and work and I was finally diagnosed with MC in 1998, "cause unknown." Asacol was prescribed but only made me worse, and basically the doc just left me high and dry with no other options offered. I really relate to other people on here who have said you just get to the point where you are afraid to eat anything! I tried eliminating various foods (milk, wheat, soy) from my diet with no improvement, and finally went to a Chinese acupuncturist in Calgary Alberta ( actually from China) who treated me with light/heat therapy, acupuncture and black cohosh, and for six months I was gloriously symptom free! Then I moved to a small town in British Columbia, had difficulty finding work, got very stressed and my symptoms returned. I tried a local acupuncturist but did not get the same results. I just went on dealing with it as best I could, got another sigmoidoscopy and this time the doctor I saw told me about Pepto Bismul relieving symptoms. I swear this bit of information has saved my sanity. I do not use it often, only when i know I will be out in public and may be eating food away from home (conferences, etc.) but it has made my life bearable.
It turned out that I also had a very high level of a parasite called blasto cystis (common in many people but not such high levels, and apparently harmless...) and I thought that might be the root of my problem. I took very strong antibiotics to get rid of it, to no avail. Meanwhile a stool test came back with a note from the lab tech saying there was something in my stool that indicated there could be an allergy present. So I went back on line to research food allergies and discovered that there was such a thing as a casein allergy. My mother was very allergic to milk (she sneezed) so it made sense that I might be but when I had tried eliminating milk from my diet first time, 7 years before, I had continued to use coffee mate , not knowing it had casein in it. On a milk allergy website I read about casein and coffeemate and it all began to make sense, and when I started avoiding all milk products, my symptoms got significantly better. But milk is sure insidious, and I seem to be constantly inadvertently poisoning myself. I also suspect there are other things I react to that i just have not identified yet (peas???, lettuce, peanuts? ) . Wheat does not seem to be one of them (oh, Lord, I pray not!). In fact like others here, I seem to do better if I eat a bit of bread every day. That is such a joy of this site.. to find out others are like You!!
I have not had an (unaided) normal bowel movement in over 10 years , and although I have good days (3-4 BM's) and bad days ( 15-20) , good weeks and bad weeks, as others have reported, I often react and I have no idea why. I am interested to learn more about cortico-steroids for treatment of MC. The last time I was at a specialist, 6 or 7 years ago, this was not being used to treat it.
I am going to my GP to ask about getting on Enterocort in two weeks. We do not have a gastro specialist anywhere near here.. the closest is about 350 miles away, I think. I am not sure if the GP will feel comfortable doing this but it's worth a try.
Thanks for listening to my story (so much for being brief!) And for being here....
Linda in BC
"Be kind whenever possible. It is always possible."
The 13th Dali Lama
Thank you for this information, Tex )Wayne :-)) . I had tried to research b calcium and mouth sores on the web but found nothing.. it was just my intuition that said try this and see, and it worked. I will definitely try to find some sublingual vitamins. Makes sense! I also wonder about calcium and magnesium. If I miss taking my calcioum and magnesium supplements for even just one night, I get brutal leg cramps, which suggests to me that I am not really getting enough out of the ones I take orally and am just on the edge of deficiency.
Linda
"Be kind whenever possible. It is always possible."
The 13th Dali Lama
If you have a diagnosis of MC, by a GI specialist, in your records, your GP may be willing to prescribe Entocort EC for you, especially since it's so far to the nearest GI specialist. It's certainly worth a try, as you say.
Leg cramps can also be caused by electrolyte deficiencies, especially potassium. I treat to eat a banana every day, for that reason. I used to get bad leg and foot cramps, before I started taking a multivitamin. Vitamin D3 is very important, also, especially at your high latitude, in BC, Canada. Many of us are low on D3, and that makes us susceptible to catching viruses, and being low on vitamin D interferes with healing. At your latitude, (with a relatively low sun angle), you should probably be taking around 5,000 to 6,000 IU per day, of vitamim D3.
Thanks for the update, on your history. I agree that you probably do have other food intolerances that you may need to avoid.
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.
Welcome to the site. I hope you will find answers to help you resolve your MC. It can be a debilitating disease, but with diet and/or medication, you should be able to resume a normal life.
I previously posted about my mouth sores, which are similar to canker sores. I tried changing toothpaste, and an increased dosage of Entocort, but the sores were always there.
I've recently discovered that I am intolerant to all fruits, even the ones lowest in fructose, lemons and limes. I eliminated them and the mouth sores went away. But they returned when I ate my homemade mayonaisse one day. I used apple-cider vinegar in the recipe. I replaced the apple-cider vinegar with rice vinegar and the mouth sores went away completely.
I'm not saying that you are intolerant to fructose, but there is probably a relationship between your mouth sores and what you are eating.
Gloria
You never know what you can do until you have to do it.
Hi there, the small pea-like structures you describe, in the back of your throat, are called tonsil stones. They can vary in size from tiny (less than a grain of rice) to pea size. I get a tiny one once in a while. There is lots of information about them if you search under "tonsil stones". Sylvia
Thank you both, gloria and Tex, for you helpful comments. I have been eating a lot of fruit lately (for a while there frui twas not bothing my guts) so I will observe this and see if that might have something to do with the mouth sores. And I did not know that low electrolytes could cause leg cramps! I do eat a banana 2 or 3 times a week for the potassium but perhaps I need more.
thanks again.
Linda
"Be kind whenever possible. It is always possible."
The 13th Dali Lama
After all I believe that the mouth is part of the GI tract. 
