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Hi Guys,
This board is so full of helpful and kind people! I want to say thanks to the provider of this helpful forum. It did not take long to figure out a lot of attention and TLC goes into it.
So, here's my story....
I had a colonoscopy ten years ago because of a positive home stool test. I was told I was fine - nothing found. However, no biopsies were taken. Until then I had lived with chronic constipation all of my life, dealing with what my family calls "poop attacks" (long bathroom sessions with severe cramping and pain). But, starting with the clean out, I have had left side cramping and pain (constant about five years - about half the time now) and chronic diarrhea off and on since, alternating with mild constipation. I also have other random pain and cramping, plus burning pain across the lower abdomen, but the left side pain came first. I got e. coli four years ago, which increased the number of spells of D. I've noticed along the way that a lot of foods cause D, such as soy, sugar alcohols and dairy. I used to treat the D with Loperamide, but became concerned when I realized the D was "normal" for me and stopped using it unless I was away from home or needed to leave my house because I was not sure it was safe to use regularly.
I have seen what I though were tiny amounts of blood in my stool and blood on the tissue off and on since not long after I had the first scope and have always blamed it on internal hemorrhoids, since nothing was found during the first scope and because I saw blood on the tissue sometimes before the scope. In May, after passing blood, I discovered there was a lot more blood on my stool than I had ever seen. I was also becoming very ill (weak, no appetite, slight fever, etc.) after a three month spell of almost daily explosive diarrhea. My blood tests showed signs of infection so I was put on an antibiotic. I had a scope (colonoscopy and endoscopy) in June. One benign polyp was removed, and even though he saw an area of minimal "ulceration" he told me on follow up, while reading the biopsy report, "they don't really know what you have" and prescribed Asacol. I also went on medication for stomach issues.
He referred me to another doctor in his clinic who has a better understanding of colitis (studied gastroenterology for 12 years, but is not a gastroenterologist - there is not one where I live) and she says the biopsy results show LC. I asked about the blood in my stool and she said it was from the internal hemorrhoids. I asked about the ulceration the scope doctor saw. She said it had nothing to do with the colitis and was likely a result of the clean out for the scope.
She also says I will very likely go into remission on Asacol, plus the Ranitidine and Zyrtec she prescribed for the LC on July 20th. I'm having a hard time with the idea of taking the Ranitidine since I've read it's one of the medicines thought to cause MC. I also recently started using Analpram for the hemorrhoids. So far, my condition is virtually unchanged except I have fewer episodes of D since going off dairy, and slightly fewer on Asacol.
Personally I think I've been dealing with colitis for years and didn't know it. This last ordeal was no worse than other times, except for the blood I passed and the infection. Actually, it has not been that long since I noticed that things had settled down quite a bit - in the last year or two. Maybe because I've learned to avoid problem foods. However, I have been under so much stress in the last couple of years that I have been having memory problems and I forgot I can't tolerate milk very well and increased my intake dramatically early this year (using Lactaid). Last February, out of the blue, my heart was racing and my blood pressure shot up. I thought it was too much MSG so I cut out all prepackaged foods. I decided to try to reintroduce dairy as a replacement. Huge mistake!
You might be wondering how anyone could "forget" they can't tolerate dairy and try to reintroduce it to their diet. I've had fibromyalgia since 1991 (and chronic fatigue syndrome from 1980 to 1985) so I already have a lot of brain fog and memory problems. I've been under tremendous stress (ill mother, death of my father, and work at home job contract terminated) for two years and the first thing I noticed was my memory deteriorated dramatically. My health had been so funky for about a year and I simply was not thinking straight at all. Actually, I already knew I don't tolerate MSG well, but I was in such a fog I kinda forgot about that, too, and was not paying attention. Anyway, I thought if I tried dairy with Lactaid I might do okay. It took passing blood to get my attention and put two and two together.
I’ve given up so many foods it’s hard to get geared up for going gluten free, but I’m almost ready. One stool test, done by Diagnos-Techs, showed I am not allergic to wheat. I am currently waiting on food allergy blood test results from Alletess. The biopsy did not show celiac, but from reading this board it sounds like the test is not usually accurate. My primary doctor, located in another town, is an MD who practices alternative medicine. He gave me the kits to have the stool testing done. I may get some of the tests offered by Dr. Fine, depending on what the other test shows.
So, like most new visitors, I'm very confused and overwhelmed by the situation. I need advice on some things, but I will save that for another post since this one is getting so long. Thanks for being here!
Robbie
PS This is what my doctor said indicates LC -- MUCOSA, SIGMOID COLON, BIOPSY: MILD CHRONIC COLITIS WITH FOCAL INTRAMUCOSAL HEMORRHAGE AND LYMPHOID FOLLICLE, WITHOUT OTHER DISTINGUISHING FEATURES. Sections reveal a biopsy of colonic mucosa. A lymphoid follicle is present producing nodular configuration. A well formed germinal center is present, with an asymmetric cap of bland appearing lymphocytes. A small amount of intramucosal hemorrhage is present. Other areas of the mucosa composed of simple tubular glands which reach all the way to the muscularis mucosa. There is a small area of intramucosal hemorrhage associated with refractile granules suggestive of hemosiderin, this suggesting previous a small area of intramucosal hemorrhage. In a couple of areas is mildly expanded also by plasma cells, lymphocytes and occasional eosinophils. No crypt abscesses, areas of fibrosis, granulomas, or pseudeomembranes are present.
Another Newbie
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Robbie, we are very glad you found us. This has sure been newbie week!
Hi Robbie,
Welcome! My heart goes out to you - you have been symptomatic for so long.
I think addressing the gluten issue is a necessary one for you. Gluten is most definitely associated with brain fog. Giving up gluten is not easy, but if you start to feel better it makes it very worthwhile. Enterolab is a good choice, but if they have already ruled out celiac, there is no reason to wait to start a gluten free trial and see if it helps.
I am curious why your doctor ordered ranitidine and zyrtec? Did they do a tryptase stain and see an increased number of mast cells in your gut? That's not a treatment for LC, but they could suspect a mast cell issue. Your incident with racing heart and blood pressure spike are suspicious for that. In fact, so is your unexplained bleeding. Also, why asacol and not entocort? One of the things you will learn on this forum is that you MUST question your doctor - often they are not up to speed on MC or mast cell issues.
You have found the right place to get some long overdue answers.
Welcome aboard!
Mary Beth
Welcome! My heart goes out to you - you have been symptomatic for so long.
I think addressing the gluten issue is a necessary one for you. Gluten is most definitely associated with brain fog. Giving up gluten is not easy, but if you start to feel better it makes it very worthwhile. Enterolab is a good choice, but if they have already ruled out celiac, there is no reason to wait to start a gluten free trial and see if it helps.
I am curious why your doctor ordered ranitidine and zyrtec? Did they do a tryptase stain and see an increased number of mast cells in your gut? That's not a treatment for LC, but they could suspect a mast cell issue. Your incident with racing heart and blood pressure spike are suspicious for that. In fact, so is your unexplained bleeding. Also, why asacol and not entocort? One of the things you will learn on this forum is that you MUST question your doctor - often they are not up to speed on MC or mast cell issues.
You have found the right place to get some long overdue answers.
Welcome aboard!
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
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Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Robbie I can certainly understand the issue of Brain Fog.. It was most certainly related to gluten for me. I also am intolerant to soy and dairy. Changing my diet while hard at first has been one of the best things I could have done to manage this disease.
Mary Beth has definitely is one of the many experts on this site and the advice given has certainly helped in my case
Welcome to the group
--Joe
Mary Beth has definitely is one of the many experts on this site and the advice given has certainly helped in my case
Welcome to the group
--Joe
Joe
Hi Robbie,
Welcome to our internet family. Wow! What a history. Regarding your brain fog - that's a common symptom of MC, for those of us who have neurological involvement. I'm not a medical professional, so I'm certainly not a pathology expert, but when I look at your biopsy report, try as I may, I'm unable to justify a diagnosis of MC from the pathology information that you provided, (at least not the most common forms of MC). First off, the intramucosal hemorrhage is troubling - MC does not cause bleeding, so that histology marker is definitely not connected with common forms of MC, (LC and CC). In fact, the report does not even mention a lymphocyte count, (nor a measurement of submucosal collagen band thickness), so it is impossible to identify, (or rule out), a diagnosis of LC or CC from that report. You can only find MC if you look for it, and I get the impression that the pathologist who wrote that report did not even have MC on his or her radar, at the time.
That said, you probably do indeed have MC, your biopsy samples were just not properly originally analyzed, for diagnosing the disease.
You desperately need to see a qualified GI doc, who really knows his or her stuff, or else have your biopsy slides examined by a pathologist who is really up to date on new developments. It is possible to re-stain your biopsy specimens, for example, with a special stain, in order to make the mast cells visible under the microscope. That would allow a pathologist to determine whether you do indeed have a mast cell problem.
Your biopsy report doesn't indicate any clear-cut markers on which to make a diagnosis, but of course, the possible presence of an elevated mast cell count was not even considered, when your slides were originally examined by a pathologist.
I also agree with Mary Beth that gluten in your diet is almost certainly your primary problem. It would be extremely rare for someone to be sensitive to the protein in dairy products, without also being sensitive to gluten. Gluten crosses the blood/brain barrier, and causes, (among other neurological issues), brain fog. That is not normally a symptom of dairy-sensitivity. It's not only possible, but likely, that by eliminating gluten from your diet, your other autoimmune issues, (and your other symptoms), will be significantly improved.
Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
Welcome to our internet family. Wow! What a history. Regarding your brain fog - that's a common symptom of MC, for those of us who have neurological involvement. I'm not a medical professional, so I'm certainly not a pathology expert, but when I look at your biopsy report, try as I may, I'm unable to justify a diagnosis of MC from the pathology information that you provided, (at least not the most common forms of MC). First off, the intramucosal hemorrhage is troubling - MC does not cause bleeding, so that histology marker is definitely not connected with common forms of MC, (LC and CC). In fact, the report does not even mention a lymphocyte count, (nor a measurement of submucosal collagen band thickness), so it is impossible to identify, (or rule out), a diagnosis of LC or CC from that report. You can only find MC if you look for it, and I get the impression that the pathologist who wrote that report did not even have MC on his or her radar, at the time.
That said, you probably do indeed have MC, your biopsy samples were just not properly originally analyzed, for diagnosing the disease.
I certainly agree on the points that Mary Beth raised. Those issues in the quote above, together with the potent effect that stress seems to have on you, suggests to me that you might have Mastocytic Enterocolitis, or mast cell issues. This is even indicated by your biopsy report, (occasional eosinophils). Eosinophil granulocytes, usually called eosinophils, (or eosinophiles), are white blood cells that are one of the immune system components responsible for combating multicellular parasites and certain infections. Along with mast cells, they also control mechanisms associated with allergy and asthma. The presence of eosinophils in the lower GI tract is associated with disease, and disease severity. Epsinophils are also used by the immune system to fight helminth (worm) colonization and may be slightly elevated in the presence of certain parasites. It's possible that the bleeding could be due to the presence of parasites, for example - were your stool samples ever checked for parasites? In your case, however, the presence of the eosinophils is probably due to mast cell issues.Robbie wrote:Last February, out of the blue, my heart was racing and my blood pressure shot up. I thought it was too much MSG so I cut out all prepackaged foods. I decided to try to reintroduce dairy as a replacement. Huge mistake!
You desperately need to see a qualified GI doc, who really knows his or her stuff, or else have your biopsy slides examined by a pathologist who is really up to date on new developments. It is possible to re-stain your biopsy specimens, for example, with a special stain, in order to make the mast cells visible under the microscope. That would allow a pathologist to determine whether you do indeed have a mast cell problem.
Your biopsy report doesn't indicate any clear-cut markers on which to make a diagnosis, but of course, the possible presence of an elevated mast cell count was not even considered, when your slides were originally examined by a pathologist.
I also agree with Mary Beth that gluten in your diet is almost certainly your primary problem. It would be extremely rare for someone to be sensitive to the protein in dairy products, without also being sensitive to gluten. Gluten crosses the blood/brain barrier, and causes, (among other neurological issues), brain fog. That is not normally a symptom of dairy-sensitivity. It's not only possible, but likely, that by eliminating gluten from your diet, your other autoimmune issues, (and your other symptoms), will be significantly improved.
Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
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 warm welcome. I've been lurking for quite a while and noticed there are a lot of newbies. Seems odd for something considered to be rare.
Mary Beth, I'm more than willing to give up gluten and see what happens. I've been so sick and have lost so much weight that I simply have not been ready to take the plunge. I can afford to lose the weight - lots of weight - but I am alarmed at the rate I'm losing (2-4 pounds a week - close to 30 in 3 months). I don't have the energy to worry about what to eat so I've been eating what I know I can tolerate. I seem to tolerate wheat and oats just fine, but I realize the true test will be giving them up. Rye is another matter - I know it bothers me and avoid it.
They did not do a tryptase stain that I know of. I had to ask for the Celiac biopsy, but I did not know to ask about the stain and nobody has ever mentioned it to me. I was put on the Zyrtec and Ranitidine on a follow up visit with the doctor that diagnosed LC. I found out after she put me on it that Ranitidine is thought to possibly cause MC (I think I read it here, and elsewhere online). I asked her about it and she said she had never heard of that and would have to see the research on it. She never explained the Zyrtec - just that it's a treatment for LC. As for the Asacol, she did not put me on it - the doctor who did the scopes did, and then referred me to her.
I agree - we do have to question our doctors, but I've been too sick to accomplish much in that department. If I felt better I'd have gone out of town for the scope, but I did that ten years ago and it got me nowhere. Now I'm too sick and too tired. The woman I'm seeing really wants to help. She takes her time with me and is open to questions. I just need to know what to ask.
I did ask about cutting back on the Asacol (it's been two months) and she did not argue with me, so I just started on half of what I was taking a few days ago. She went over some other medicines, briefly, but said "We don't use that" and dropped it. I have no idea what she was talking about. I can ask her about Entocort, but I understand it's expensive. I don't have any income (I am disabled) so I am very concerned about the expense. Even the expense of Asacol. And I've had other expenses trying to get to the bottom of my increased pain issues. I've had fibromyalgia and lower back pain for a long time, and plenty of other pain (wrists, arms, legs, neck, feet, migraines, etc.), but never have I been so bad. The doctor who did the scope said my worsened back pain could be from colitis, but the current doctor says no way. Blood tests and x-rays show arthritis in my neck, back and wrists, so maybe there is no connection. Either way, the increased pain is a huge problem now, too. The stress of spending even more of my savings probably contributes to the D, so I walk a fine line. I have insurance, but my deductible is $5,000.
I am really hoping the Analpram will stop the bleeding, but in ten days of use I've seen no difference. My blood pressure is much better now that things have settled down a bit.
I do feel better now that I've posted, though. I've been trying to get around to joining in for over a month. You are all so nice! Sorry to ramble...it's the fibro-fog.
Robbie
Mary Beth, I'm more than willing to give up gluten and see what happens. I've been so sick and have lost so much weight that I simply have not been ready to take the plunge. I can afford to lose the weight - lots of weight - but I am alarmed at the rate I'm losing (2-4 pounds a week - close to 30 in 3 months). I don't have the energy to worry about what to eat so I've been eating what I know I can tolerate. I seem to tolerate wheat and oats just fine, but I realize the true test will be giving them up. Rye is another matter - I know it bothers me and avoid it.
They did not do a tryptase stain that I know of. I had to ask for the Celiac biopsy, but I did not know to ask about the stain and nobody has ever mentioned it to me. I was put on the Zyrtec and Ranitidine on a follow up visit with the doctor that diagnosed LC. I found out after she put me on it that Ranitidine is thought to possibly cause MC (I think I read it here, and elsewhere online). I asked her about it and she said she had never heard of that and would have to see the research on it. She never explained the Zyrtec - just that it's a treatment for LC. As for the Asacol, she did not put me on it - the doctor who did the scopes did, and then referred me to her.
I agree - we do have to question our doctors, but I've been too sick to accomplish much in that department. If I felt better I'd have gone out of town for the scope, but I did that ten years ago and it got me nowhere. Now I'm too sick and too tired. The woman I'm seeing really wants to help. She takes her time with me and is open to questions. I just need to know what to ask.
I did ask about cutting back on the Asacol (it's been two months) and she did not argue with me, so I just started on half of what I was taking a few days ago. She went over some other medicines, briefly, but said "We don't use that" and dropped it. I have no idea what she was talking about. I can ask her about Entocort, but I understand it's expensive. I don't have any income (I am disabled) so I am very concerned about the expense. Even the expense of Asacol. And I've had other expenses trying to get to the bottom of my increased pain issues. I've had fibromyalgia and lower back pain for a long time, and plenty of other pain (wrists, arms, legs, neck, feet, migraines, etc.), but never have I been so bad. The doctor who did the scope said my worsened back pain could be from colitis, but the current doctor says no way. Blood tests and x-rays show arthritis in my neck, back and wrists, so maybe there is no connection. Either way, the increased pain is a huge problem now, too. The stress of spending even more of my savings probably contributes to the D, so I walk a fine line. I have insurance, but my deductible is $5,000.
I am really hoping the Analpram will stop the bleeding, but in ten days of use I've seen no difference. My blood pressure is much better now that things have settled down a bit.
I do feel better now that I've posted, though. I've been trying to get around to joining in for over a month. You are all so nice! Sorry to ramble...it's the fibro-fog.
Robbie
Happy for you (as well as for myself) that you found this board. Nobody I know could really relate to what I've been going through, so finding a group of nice people who have first hand experience with MC and lots of knowledge and great advise is amazing.
Just a word of encouragement - I thought it would be impossible for me to give up wheat products (grew up in Norway where bread is part of every meal), but have discovered that it is in fact quite easy. I'm well into my second month of being gluten free, and have adapted amazingly quickly as there are so many gluten free options available.
Lots of luck to you in your pursuit of health!!!
Just a word of encouragement - I thought it would be impossible for me to give up wheat products (grew up in Norway where bread is part of every meal), but have discovered that it is in fact quite easy. I'm well into my second month of being gluten free, and have adapted amazingly quickly as there are so many gluten free options available.
Lots of luck to you in your pursuit of health!!!
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
Tex, you said what I've been thinking - that the doctors and the lab here are not up to speed, much like the one in the big city who did not even take biopsies ten years ago. I wondered why the pathology report did not say MC, and from reading online I got the impression there should have been a count. My doctor has not mentioned mast cells at all, so I will ask about staining.
The local lab did a stool test for Salmonella, Shigella, Escherichia coli 0157, Campylobacter, Yersinia, ova and parasites, Giardia, WBC and nothing was found. My alternative medicine MD had me do a stool and saliva test with Diagnos-Techs in Seattle. I just got the results in the mail, but have not gone over them with him. It says Roundworm was detected in saliva - that a positive finding may indicate a recent or ongoing exposure or a residual titer. It also says the Bacterial Stool Cu. shows "Pathogens/Bacterial Overgrowth Detected", Toxoplasma Ab, SIgA (Saliva) is positive, Total Intestinal SIgA (Stool) is depressed, Intestinal Lysozyme (Stool) is elevated (indicating ongoing colonic inflammation), Alpha Anti-Chymotrypsin (Stool) is 138 which equals "Mild/Distal Colitis", and Tapeworm (T.solium) SIgA (Saliva) is "Equivocal". So---sounds like it could very well be worms (ick!). However, the lab results also say it's a screening test, not a diagnostic test, so I guess it doesn't really confirm anything.
I have other biopsy results, and the "Mucosa, Esophogus Biopsy" is called "Mild chronic esophogitis with features consistent with reflux", which also mentions "infrequent eosinophiles". Could that also indicate a mast cell issue? The duodenum biopsy does not say that, but the "random biopsies" mention "infrequent eosinophiles" just like the sigmoid colon biopsy. I can type it out for you, if you want to take the time to read them all, but maybe this says something......
I know I have to go gluten free. I believe it will help me. I've been too sick to try to find another doctor. I am hoping with the help I know I will get from you all that I can get things handled (for now, anyway) with my local doctor. She really tries to help, and wants to help. She takes plenty of time with me and answers all of my questions. However, I am thinking about getting referred to a GI doctor out of town. It will take two months to get in, so maybe by then I will be up to the trip. Boy - I sound like a wimp, but I am so exhausted I cannot stand the thought of going.
Thanks,
Robbie
The local lab did a stool test for Salmonella, Shigella, Escherichia coli 0157, Campylobacter, Yersinia, ova and parasites, Giardia, WBC and nothing was found. My alternative medicine MD had me do a stool and saliva test with Diagnos-Techs in Seattle. I just got the results in the mail, but have not gone over them with him. It says Roundworm was detected in saliva - that a positive finding may indicate a recent or ongoing exposure or a residual titer. It also says the Bacterial Stool Cu. shows "Pathogens/Bacterial Overgrowth Detected", Toxoplasma Ab, SIgA (Saliva) is positive, Total Intestinal SIgA (Stool) is depressed, Intestinal Lysozyme (Stool) is elevated (indicating ongoing colonic inflammation), Alpha Anti-Chymotrypsin (Stool) is 138 which equals "Mild/Distal Colitis", and Tapeworm (T.solium) SIgA (Saliva) is "Equivocal". So---sounds like it could very well be worms (ick!). However, the lab results also say it's a screening test, not a diagnostic test, so I guess it doesn't really confirm anything.
I have other biopsy results, and the "Mucosa, Esophogus Biopsy" is called "Mild chronic esophogitis with features consistent with reflux", which also mentions "infrequent eosinophiles". Could that also indicate a mast cell issue? The duodenum biopsy does not say that, but the "random biopsies" mention "infrequent eosinophiles" just like the sigmoid colon biopsy. I can type it out for you, if you want to take the time to read them all, but maybe this says something......
I know I have to go gluten free. I believe it will help me. I've been too sick to try to find another doctor. I am hoping with the help I know I will get from you all that I can get things handled (for now, anyway) with my local doctor. She really tries to help, and wants to help. She takes plenty of time with me and answers all of my questions. However, I am thinking about getting referred to a GI doctor out of town. It will take two months to get in, so maybe by then I will be up to the trip. Boy - I sound like a wimp, but I am so exhausted I cannot stand the thought of going.
Thanks,
Robbie
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Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Robbie no that was not a dream.. But also I feel the 'FMS' was due to the MC and more importantly the reaction to gluten. As I have eliminated gluten (soy & dairy) the pain levels have gone down immensely. I still see some lower back and hip pain, but that is usually related to the MC or Crohns flaring up a bit as well.
I believe the pain diagnosis of FMS about 10 years ago really was the start of MC for me. It has just taken until this past April for the GI symptoms to get to the point of needing to be tested. There were 'hints' of GI symptoms, unexplained short bouts of D that you would write off to a bad meal or a stomach bug... Too bad it took 10 years of pain treatments and pain pills to figure it out.
--Joe
I believe the pain diagnosis of FMS about 10 years ago really was the start of MC for me. It has just taken until this past April for the GI symptoms to get to the point of needing to be tested. There were 'hints' of GI symptoms, unexplained short bouts of D that you would write off to a bad meal or a stomach bug... Too bad it took 10 years of pain treatments and pain pills to figure it out.
--Joe
Joe
Robbie,
I hear you - just getting out of bed and getting dressed can be a major accomplishment some days, when the symptoms are raging. The price of Entocort, (and most drugs, for that matter, in this country), is a crime. There is a way around it, though, and this works, because we have several members using this product. For details, see my post in this thread:
http://www.perskyfarms.com/phpBB2/viewt ... ight=budez
If you need that information in the future, you can also find it in the "Information on Medications" forum, under Announcements.
I believe your doctor is wrong about the back pain. Many of us have had lower back problems that appear to be related to MC. Also, I had major arthritis issues before I cut gluten out of my diet, (I still have a couple of crooked and twisted fingers to prove it), but I no longer have any noticeable arthritis symptoms. Before I started the diet, my knees got so bad that I had to use a cane, (sometimes 2 canes), just to get around. I walk just fine, now.
Please don't feel like the Lone Ranger. When my symptoms started, (uncontrollable D), and I went through the clinic tests, (about 10 years ago, also), my GI doc didn't take biopsies, either.
Awareness of the disease has improved a lot since then, so they're much better at diagnosing it. They just need to figure out some better ways to treat it, than the ones they're recommending.
Tex
I hear you - just getting out of bed and getting dressed can be a major accomplishment some days, when the symptoms are raging. The price of Entocort, (and most drugs, for that matter, in this country), is a crime. There is a way around it, though, and this works, because we have several members using this product. For details, see my post in this thread:
http://www.perskyfarms.com/phpBB2/viewt ... ight=budez
If you need that information in the future, you can also find it in the "Information on Medications" forum, under Announcements.
I believe your doctor is wrong about the back pain. Many of us have had lower back problems that appear to be related to MC. Also, I had major arthritis issues before I cut gluten out of my diet, (I still have a couple of crooked and twisted fingers to prove it), but I no longer have any noticeable arthritis symptoms. Before I started the diet, my knees got so bad that I had to use a cane, (sometimes 2 canes), just to get around. I walk just fine, now.
Please don't feel like the Lone Ranger. When my symptoms started, (uncontrollable D), and I went through the clinic tests, (about 10 years ago, also), my GI doc didn't take biopsies, either.
Awareness of the disease has improved a lot since then, so they're much better at diagnosing it. They just need to figure out some better ways to treat it, than the ones they're recommending.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.
Oh, Kari, I could not believe my eyes when I found this forum. I knew I hit the mother lode! I had been searching and searching for information and thought I'd never find what I was looking for. Actually, I kept seeing the site in searches, but did not click for the longest time because I thought it was a site only for animals because of the word "farms". I guess that was the brain fog at work! I just wish I'd have gotten around to posting sooner.
I also wish there were not so many others out there dealing with what I'm dealing with, but I guess if there has to be others then it's good that we can all connect and help each other. I don't have much knowledge about it, but I can, hopefully, offer support.
I've never been big on bread so I think I will be okay without it. I'm not even really getting much gluten in my diet right now. What I am not excited about is making the effort of finding all sources and eliminating them. I gave up wheat for one month 15 years ago and did not miss it a bit. The hardest part was making sure there was no hidden wheat in my food. I suppose I should have stayed with it, but it was wheat only and I noticed no health benefits at all. Oh, there is one thing I will miss - my beloved soda crackers. I've been sick to my stomach all or part of every day since about the age of 15 (I'm 53) and soda crackers are my best medicine.
Robbie
I also wish there were not so many others out there dealing with what I'm dealing with, but I guess if there has to be others then it's good that we can all connect and help each other. I don't have much knowledge about it, but I can, hopefully, offer support.
I've never been big on bread so I think I will be okay without it. I'm not even really getting much gluten in my diet right now. What I am not excited about is making the effort of finding all sources and eliminating them. I gave up wheat for one month 15 years ago and did not miss it a bit. The hardest part was making sure there was no hidden wheat in my food. I suppose I should have stayed with it, but it was wheat only and I noticed no health benefits at all. Oh, there is one thing I will miss - my beloved soda crackers. I've been sick to my stomach all or part of every day since about the age of 15 (I'm 53) and soda crackers are my best medicine.
Robbie
Possibly, though in "doctor jargon", the term "infrequent" probably refers to a minimal amount, whereas they should be numerous. Eosinophilic esophagitis involves mast cells, for example:Robbie wrote:"infrequent eosinophiles". Could that also indicate a mast cell issue?
http://www.ncbi.nlm.nih.gov/pubmed/18681944
There are GF rice crackers available. Edwards and Sons makes some, for example, (available in health food stores), that are pretty good. There are various flavors available, but you have to read the labels, to make sure that the individual versions do not contain something that you are sensitive to.
Concerning the name of the domain - one day we realized that we were in need of a new discussion board, and since I already owned a domain, (with a commercial website set up), I just volunteered it, converted it, and removed most of the original web site, so that we could use it as a discussion board. At the time, it was much cheaper than buying a new domain name. It is a bit misleading, though.
Tex
P. S. I almost forgot - if you are willing to take responsibility for your own health, (as most of us here do), then the only reasons why you might need a doctor, are to give tests, and to write prescriptions. For those purposes, the main consideration in selecting a doctor, is to find one that is willing to listen to your needs, and willing to work with you, and it sounds as though you already have one who meets those requirements.
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.
Joe, I'm so sorry you had to suffer so much before you could start to get well! I suppose that's the case for everyone here....
I believe all of my "stuff" is related, too. I guess it's time for me to give up gluten and find out if it helps. I also need to be more strict with dairy and soy. I avoid them but I'm not making sure they are not hidden in something. I don't think so, but I'm probably not being as careful as I need to be.
Robbie
I believe all of my "stuff" is related, too. I guess it's time for me to give up gluten and find out if it helps. I also need to be more strict with dairy and soy. I avoid them but I'm not making sure they are not hidden in something. I don't think so, but I'm probably not being as careful as I need to be.
Robbie