Hello all. This forum has been very helpful in that it has provided alot of information that I wasn't getting anywhere else. As I beleive most have experienced, my GI doctor has been almost totally useless. I have some questions related to treatment and my current symptoms which are somewhat strange. I want to see if any others have experienced these to confirm it is MC related. Sorry in advance for the long post!
I was first diagnosed after coloniscopy with LC about 2-1/2 years ago after having major digestive issues. I didn't really have diarrhea, but very bad gas, bloating, weigth loss (initially due to not eating, but continued even on a 2000+ calorie diet for awhile). After many tests the only items found were the LC, minor diverticulosis, and small benign hemmangiomos in my liver. Was blood tested multiple times for celiac and biopsied during the colonoscopy with no signs small intestinal damage. GI doc diagnosed IBS and suggested a low FODMAP diet. I also found this forum and had the full Enterolab testing done. I have celiac gene and another gluten sensitivity gene. Only food sensitivity found was for gluten. The test didn't include the fecal Anti-Tissue Transglutaminase Antibody test (wish it did now). I continued the no gluten/low FODMAP diet for number of months, but never got completely better. I still had gas/bloating (not as bad) and started gaining weight back. I was never fully convinced that gluten was the issue as I have eaten it all my life and I soon quit following. I didn't really notice any change for the worse when I reintroduced the gluten.
Fast forward to the last couple months. My GI symptoms started getting a little worse again, but no where near as bad as the first time (I think some of the severity the first time was due to my own panic/stress). I didn't think much of it, but started getting other weird issues. I first noticed the palms of my hands and even more so the tips of my fingers got redder than normal (especially after toucing or grabbing something) I also noticed that at times my hands and feet would get a hot feeling, the fingers/toes get even redder, and at those times the veins on top of my feet and back of hands would become very pronounced. I have always had prominent veins, but when this occurs they bulge the whole way into my fingers. I can even see little blue veins under the skin above the last joint in my fingers. At one point the tips of my fingers even got sore to the point it hurt to type on the computer. I also have gotten what seems like intermittent neuropathy in my hands/feet and somewhat in lower arms/legs. This occurs mostly at night while sleeping. Finally, I am getting intermittent dry eyes and mouth/throat. When this happens I drink water thinking I may just be dehydrated, but it ends up going right through me, so that isn't the cause.
Anyone else have similar issues and/or could the MC cause these? Wondering if histamine can cause any of these? I believe histamine is some component of my MC as I sometimes get stuffy nose, stinging eyes, and sneezing. These are definitely related to my gut as they occur when I lay down and I start to feel food start moving again.
Since this all started, my main continuous symptoms have been gas/bloating, discomfort, and slightly loose stools. The MC in my original colonoscopy was in only in the acending and transverse colon, but not the descending. I am thinking this may be why I have not had issues with diarrhea. I am guessing here,but I think this still limits the amount of waste that can be processed in my colon and everything gets backed up. No matter how early I eat dinner, it seems that food just sits in my small intestine all night long creating gas/discomfort. I know the gas is primarily in my small intestine as I can feel it bubbling into my colon in the lower right quadrant when it finally moves and then I can release it a few minutes later. This can go on for 20-30 minutes ince it fianlly starts moving. The only way I can get things moving at times is to lay down and rotate from my back to my side and back again. Sometimes this doesn't really work either and I don't think my small intestine ever really clears and cleans itself the way it is supposed to. I most definitely seem to have SIBO, but can only guess the MC is the real cause. Anyone else have similar issues with gut motility?
I went gluten free again 2 weeks ago, but no major improvement yet. Would it still be normal to have signs of a histamine reaction as I am still sneezing frequently when I lay down? Is the histamine issue a sign that I still just need to heal or is it indicative of some other food sensitivity that I still need to find? Gluten was the only food identified on my prior Enterlab test.
How long should I give the gluten free diet to see improvement? If it doesn't work soon, I am considering trying the Pepto Bismol treatment myself or going back to the GI doctor to get a short term prescription to treat. My thinking is that a short term prescription treatnent could at least verify that the MC is causing all my symtpoms if they go away. This confirmation would then give me the push I need to investigate other triggers. Which one should I ask to try? Budesonide?
I also just started seeing a Naturopathic Doctor. She (unlike my GI) is having me do a SIBO breath test. My GI never did a SIBO test, she jsut gave me a prescription for Xifaxin that didn't work. She is also starting me on digestive enzymes and supplements to help soothe/heal the gut. She also wants to get me off Nexium which I had already weaned down to 10mg/day a year of so ago. I have been on Nexium for 10 plus years due to reflux, mild hiatal hernia, and Barretts Esophagus. I now wonder if the gluten issues are the toot cause of this old issue...maybe the gluten has been causing the reflux for a long time and only recently caused enough other damage to cause other symptoms.
Thanks for any help/feedback that you can provide.
Confirmation of symptoms and treatment advice
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First of all, welcome here! I'm also a new member with not so much experience in MC. Anyway I reply you, because I also have/had very similar gastrointestinal symptoms (started 2 years ago). No diarrhea but loose stools and huge ammount of gas. My symptoms got better when I completly stopped eating fruits. All of the fruits caused problems for me. Limitating fats and excluding raw vegetables also helped a lot.
I also thought that gluten is not problematic for me but I listened to other (more experienced) member's words and went GF 2 days ago. Let's see what will happen.
How is your diet looks like?
I have no issues with my skin, so can't advise anything in that field.
I also thought that gluten is not problematic for me but I listened to other (more experienced) member's words and went GF 2 days ago. Let's see what will happen.
How is your diet looks like?
I have no issues with my skin, so can't advise anything in that field.
Male. | Age of onset: 31. | Diagnosis of collagenous colitis at the age of 33. (A few days ago.) | Symptoms: mild morning diarrhea or loose stool once a day. Severe watery diarrhea (3-4 times after eating triggering food) once or twice in a month.
Hi,
Welcome to our Internet family. You've asked a lot of questions. I'll try to address as many of them as I can remember.
Yes, most of your symptoms are MC-related, either directly or indirectly (secondary). Gergely is right. Fruit is a problem for MC patients, especially raw fruit, because of the fructose, the fiber, and the digestive problems it can cause.
Your first issue is a chronic magnesium deficiency, which is made much worse by MC, because MC causes malabsorption of magnesium, vitamin D, and some of the B vitamins. If you have been symptomatic for two years you could even be Vitamin B-12 deficient, which could cause the sensitivity problem in the fingers. The vein issues are probably due to a vitamin B-6 deficiency, which can cause endothelial dysfunctin, leading to peripheral neuropathy. You may not be short on B-6, rather you're short on the active form of B-6 due to methylation issues, which is common with MC. IOW, your body is not capable of properly converting the inactive form of certain vitamins (vitamins that require activation by going through a methylation process) into the active form so that your body can actually use them.
To get back to the magnesium, when you have dry eyes, you're always thirsty but water goes right through you (pre-diabetes symptoms), and you have restless legs and other neurological issues that usually show up during the night (as your body runs out of magnesium reserves), You have a chronic magnesium deficiency. Doctors are never able to diagnose a chronic magnesium deficiency because magnesium deficiency isn't even on their radar, and you can't find it if you don't know how to look for it. The tests they use for measuring magnesium have such poor sensitivity that they are lucky to even be able to diagnose an acute magnesium deficiency, but they are even rarely able to do that. We have to figure out a magnesium deficiency ourselves, or it will never be treated and resolved.
These nutrient deficiencies can keep you from healing, despite being on a GF diet. Without the deficiencies, it usually takes about 3–6 months to reach remission on a GF diet, but it can take a year or longer in some cases. Every case is different.
The gas/motility issues is classic MC. Almost all of us have such issues — either too much or too little motility, and the inability to get rid of gas when we need to
You probably have histamine issues if you have methylation issues. Seasonal pollen allergies can make symptoms worse because excess histamine accumulates. Antihistamines usually help the MC symptoms. They can be as effective as budesonide for some patients.
The problem with naturopathic practitioners is that with MC, less is more. The less junk you put into your body, the faster you will heal. Naturopaths tend to overtreat MC patients with all sorts of things that never help, may cost a lot of money, and may make your symptoms worse or even prevent you from ever reaching remission. Less is more.
You're wasting your time and money on a SIBO test. We all have SIBO when our MC is active, and it resolves on it's own as our MC comes under control.
PPI's are classic triggers for MC. Many, many, cases are due to PPI's. It's an iatrogenic drug, IMO.
I hope that some of this is helpful. Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our Internet family. You've asked a lot of questions. I'll try to address as many of them as I can remember.
Yes, most of your symptoms are MC-related, either directly or indirectly (secondary). Gergely is right. Fruit is a problem for MC patients, especially raw fruit, because of the fructose, the fiber, and the digestive problems it can cause.
Your first issue is a chronic magnesium deficiency, which is made much worse by MC, because MC causes malabsorption of magnesium, vitamin D, and some of the B vitamins. If you have been symptomatic for two years you could even be Vitamin B-12 deficient, which could cause the sensitivity problem in the fingers. The vein issues are probably due to a vitamin B-6 deficiency, which can cause endothelial dysfunctin, leading to peripheral neuropathy. You may not be short on B-6, rather you're short on the active form of B-6 due to methylation issues, which is common with MC. IOW, your body is not capable of properly converting the inactive form of certain vitamins (vitamins that require activation by going through a methylation process) into the active form so that your body can actually use them.
To get back to the magnesium, when you have dry eyes, you're always thirsty but water goes right through you (pre-diabetes symptoms), and you have restless legs and other neurological issues that usually show up during the night (as your body runs out of magnesium reserves), You have a chronic magnesium deficiency. Doctors are never able to diagnose a chronic magnesium deficiency because magnesium deficiency isn't even on their radar, and you can't find it if you don't know how to look for it. The tests they use for measuring magnesium have such poor sensitivity that they are lucky to even be able to diagnose an acute magnesium deficiency, but they are even rarely able to do that. We have to figure out a magnesium deficiency ourselves, or it will never be treated and resolved.
These nutrient deficiencies can keep you from healing, despite being on a GF diet. Without the deficiencies, it usually takes about 3–6 months to reach remission on a GF diet, but it can take a year or longer in some cases. Every case is different.
The gas/motility issues is classic MC. Almost all of us have such issues — either too much or too little motility, and the inability to get rid of gas when we need to
You probably have histamine issues if you have methylation issues. Seasonal pollen allergies can make symptoms worse because excess histamine accumulates. Antihistamines usually help the MC symptoms. They can be as effective as budesonide for some patients.
The problem with naturopathic practitioners is that with MC, less is more. The less junk you put into your body, the faster you will heal. Naturopaths tend to overtreat MC patients with all sorts of things that never help, may cost a lot of money, and may make your symptoms worse or even prevent you from ever reaching remission. Less is more.
You're wasting your time and money on a SIBO test. We all have SIBO when our MC is active, and it resolves on it's own as our MC comes under control.
PPI's are classic triggers for MC. Many, many, cases are due to PPI's. It's an iatrogenic drug, IMO.
I hope that some of this is helpful. Again, welcome aboard, and please feel free to ask anything.
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.
Hi and welcome!
Almost all of us have to go GF to go into remission. Give it 10-16 weeks. You should see some improvements. A 2 week trial is not long enough. Complete healing may take 2 years depending upon your age.
IF you don't already have Tex's book check it out in the upper right hand corner. It is the only book on MC.
When you are struggling at first less supplements are better. Our guts can't digest them. The exceptions would be to keep transdermal magnesium and possibly D3 (drops if possible).
Almost all of us have to go GF to go into remission. Give it 10-16 weeks. You should see some improvements. A 2 week trial is not long enough. Complete healing may take 2 years depending upon your age.
IF you don't already have Tex's book check it out in the upper right hand corner. It is the only book on MC.
When you are struggling at first less supplements are better. Our guts can't digest them. The exceptions would be to keep transdermal magnesium and possibly D3 (drops if possible).
Thanks for the replies. I had already excluded raw vegetables/fruits for the most part. When symptoms were mild for the last 2 years I would sometimes eat a salad or other things with no apparent effect...I just didn't eat those things regularly. For the last few weeks I cut them all out again.
Tex...I should clarify that I don't really get thirsty...my mouth and eyes just seem to dry up at random times. I tried drinking water thinking I might be dehydrated, but apparently that is not the case. For example, if I wait it out and don't drink anything, the moisture in my mouth my will return to normal in a short while even if I don't drink anything.
When I first got diagnosed (and now again for the last few weeks), I have been taking an an active B complex(Doctors Best), chelated magnesium, and VitD3. The problem has been that I don't really know if I am deficient which I assume would dictate how much of each to really take. I am just following what is on the bottle, but who knows if that is enough if truly enough if defiecient and you have trouble absorbing. Just last week I did get tested for B12, magnesium, and folate. I decided to do this on my own and selected Magnesium RBC for the test as I had read it is better than the plain serum level (but maybe still not the best way to measure?). Results were all well into the normal ranges listed (magnesium RBC-5.4 mg/dL, serum B12-514 pg/mL, serum folate-8.8 ng/mL). What are your thoughts on proper dosages and/or did I do the proper tests to confirm any deficiencies?
Tex...I should clarify that I don't really get thirsty...my mouth and eyes just seem to dry up at random times. I tried drinking water thinking I might be dehydrated, but apparently that is not the case. For example, if I wait it out and don't drink anything, the moisture in my mouth my will return to normal in a short while even if I don't drink anything.
When I first got diagnosed (and now again for the last few weeks), I have been taking an an active B complex(Doctors Best), chelated magnesium, and VitD3. The problem has been that I don't really know if I am deficient which I assume would dictate how much of each to really take. I am just following what is on the bottle, but who knows if that is enough if truly enough if defiecient and you have trouble absorbing. Just last week I did get tested for B12, magnesium, and folate. I decided to do this on my own and selected Magnesium RBC for the test as I had read it is better than the plain serum level (but maybe still not the best way to measure?). Results were all well into the normal ranges listed (magnesium RBC-5.4 mg/dL, serum B12-514 pg/mL, serum folate-8.8 ng/mL). What are your thoughts on proper dosages and/or did I do the proper tests to confirm any deficiencies?
Hi,
How do you know you're not dehydrated? Moisture returning to the mouth is not a dehydration test — it's normal until you run completely out of water. The only way I've been able to tell that I'm dehydrated is by taking my blood pressure. It will be lower than usual (due to hypovolemia, especially first thing in the morning) if I'm dehydrated, but that's a pretty crude way to monitor dehydration. If urgency to urinate is a frequent problem (and of course thirst usually comes with that), that's a pretty clear marker for either magnesium deficiency or diabetes/prediabetes. YMMV.
Check both the front and rear labels on the Doctors Best Magnesium Glycinate. The front label shows twice the amount of magnesium as is actually in each tablet. If it shows 200 mg, for example, each tablet only contains 100 mg. At least that's true of every bottle I've seen.
You selected the best magnesium test that's probably available to most of us, but the problem is the listed "normal" range for results was determined using a group of subjects that turned out to be 80 % magnesium deficient, so the data are skewed for the official results. The proper range is probably about 6.0–6.8 mg/dL, but the "normal" range has never been corrected. (See Dr. Carolyn Dean's website for an expert medical viewpoint — she's won some awards for her work). So at 5.4, you are not critically low (like I was), you just don't have much of a reserve supply to get you past days when your diet comes up short on magnesium. If you don't notice any leg cramps during the night, or have any "restless leg" symptoms, your deficiency is not very serious.
Your other test results seem OK. Many MC patients (those who have methylation issues due to MTHFR gene mutations) do better when their B-12 level is higher, even though it is in the so-called "normal" range. This is because their body is unable to properly convert the inactive form of numerous vitamins (including B-12) into the active form so that various systems in their body can use them. The active form of B-12 is methylcobalamin and this is the best form to take if you want to take a supplement.
Of course this is just my strictly unprofessional opinion, and it's not chiseled in stone.
Tex
How do you know you're not dehydrated? Moisture returning to the mouth is not a dehydration test — it's normal until you run completely out of water. The only way I've been able to tell that I'm dehydrated is by taking my blood pressure. It will be lower than usual (due to hypovolemia, especially first thing in the morning) if I'm dehydrated, but that's a pretty crude way to monitor dehydration. If urgency to urinate is a frequent problem (and of course thirst usually comes with that), that's a pretty clear marker for either magnesium deficiency or diabetes/prediabetes. YMMV.
Check both the front and rear labels on the Doctors Best Magnesium Glycinate. The front label shows twice the amount of magnesium as is actually in each tablet. If it shows 200 mg, for example, each tablet only contains 100 mg. At least that's true of every bottle I've seen.
You selected the best magnesium test that's probably available to most of us, but the problem is the listed "normal" range for results was determined using a group of subjects that turned out to be 80 % magnesium deficient, so the data are skewed for the official results. The proper range is probably about 6.0–6.8 mg/dL, but the "normal" range has never been corrected. (See Dr. Carolyn Dean's website for an expert medical viewpoint — she's won some awards for her work). So at 5.4, you are not critically low (like I was), you just don't have much of a reserve supply to get you past days when your diet comes up short on magnesium. If you don't notice any leg cramps during the night, or have any "restless leg" symptoms, your deficiency is not very serious.
Your other test results seem OK. Many MC patients (those who have methylation issues due to MTHFR gene mutations) do better when their B-12 level is higher, even though it is in the so-called "normal" range. This is because their body is unable to properly convert the inactive form of numerous vitamins (including B-12) into the active form so that various systems in their body can use them. The active form of B-12 is methylcobalamin and this is the best form to take if you want to take a supplement.
Of course this is just my strictly unprofessional opinion, and it's not chiseled in stone.
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.