Hello everyone!
I have been lurking here for a couple of weeks now and need to begin with a huge "thank you" to all of you for the information and wisdom I have already found. As you all know, this can be such a frustrating, discouraging and isolating journey, and it has been wonderful to find people who know what this is like and are so supportive of each other.
I apologize in advance, because this will probably be a pretty lengthy introduction, but I'm hoping if I go over my history maybe some of you can help me to figure things out better, maybe catch something I'm missing, and help me to move forward.
While I am new to the boards, I am not new to my diagnosis - mastocytic enterocolitis. I first got sick in March of 2007 and was extremely fortunate to be referred to an excellent GI doctor (a rarity, indeed!). He was quite tenacious with testing and I was diagnosed just 4 months later, not only with the colitis, but also with Inappropriate Sinus Tachycardia (a really obnoxious heart condition). Many of the standard meds (zyrtec, zantac, cromolyn, etc.) didn't pan out due to my heart, but I tolerated pepcid ok, so we went with that. I moved out of state a year after my diagnosis, leaving my awesome doctor behind, and have struggled to find any help with this disease since.
I was on 80mg of pepcid and fairly stable symptom-wise when I moved, but was stuck on a pretty restricted diet and things stayed that way until I became pregnant in 2009. I guess my pregnancy put me into remission because as long as I didn't eat bacon or look at spinach I could eat pretty much anything I wanted without any symptoms and I was finally able to gain weight again. My OB made me stay on the pepcid and my beta-blocker, just to be safe, but I'm pretty certain I could have done without the pepcid, at least. I stayed in remission for the year that I breastfed, then I got pregnant again and the remission continued. I finally came off the pepcid entirely in April of 2012 when my 2nd child was 4 months old. In all that time the only health issue I really had was fatigue and dizzy spells from the beta-blocker pushing my blood pressure too low, and I quit taking that at the same time I stopped the pepcid, because my heart issues seemed to have gone into remission also.
Just over a year ago I started having an odd mix of symptoms that seemed to be coming out of nowhere, but in hindsight life had gotten seriously stressful for a multitude of reasons. I was getting a lot of numbness and tingling in my hands, feet and left arm, which can sometimes happen with my tachycardia, but my heart seemed to be behaving really well at the time. I was nauseous a lot of the time, lost my appetite and started losing weight. I was having weird random aches and pains. I was having visual disturbances that my opthamologist said were probably from painless ocular migraines. I started getting sick all the time and wound up with a serious case of bronchitis that took almost 2 months to get over. The levoquin I took for that touched off a major battle with insomnia and panic attacks. I started having the worst bouts of PMS I have ever had (which gave this normally mild mannered, peace loving girl her first experiences with RAGE). I saw a neurologist who ran a lot of tests that didn't show anything, so he thinks I have fibromyalgia, but didn't bother to send me to a rheumatologist to be sure because he says I have so many medication sensitivities I wouldn't be able to take anything for it. I can't get my ob/gyn to check my hormone levels - he says if my hormones seem out of whack I should just get on a birth control pill, which my opthamologist forbids me to do because he's pretty sure I'm a stroke risk.
The colitis finally joined the party last October (at least, I'm pretty certain it's the culprit). I got a sudden, intense pain just above my belly button that wouldn't let up for quite a while, followed by several rounds of diarrhea. That particular pain lessened in intensity, but continued for several days and was quite tender if pressed on. When I got sick in 2007, that's pretty much exactly how it started. I went to my PCP who ordered an ultrasound which was clean except for some trapped gas in a completely different part of my abdomen, then I was referred to a GI. I took my records from the first GI with me and was not surprised that the new guy had never heard of mastocytic enterocolitis. He seemed really nice and told me not to worry, he was committed to getting me well for my kids and I felt pretty good about it all until he said it sounded to him like I must also have IBS, and that's pretty much what he's treating me for. He did give me the go ahead to restart the pepcid (at 40mg this time because I have some concerns about taking higher doses for too long) and he put me on VSL#3, which seems to be helping some. To make the party complete, my heart started going berserk again about 6 weeks after the colitis, so I'm back on the beta-blocker, also. I did seem to be making some progress the first few months, but for Christmas Santa brought my household a stomach virus and I lost the ground I had gained and can't seem to feel any better since.
Where I'm at now is this: The diarrhea didn't stick around long, but it didn't the first time I was sick either - I seem to be more of a constipation kind of gal, but even that hasn't been too bad. I mostly get this weird pattern of being fairly normal for several days or a week, then a day or two of diarrhea-like urgency with several rounds of things just not being very well formed. Or I'll swing toward constipation and maybe skip a day altogether, then have an uncomfortable time going for a week or so. As far as all of that goes, things could be much, much worse and I know I'm very lucky. The main symptoms for me right now are abdominal pain in several locations that comes and goes, discomfort while eating and especially after I eat (even when I don't eat much), joint pain, serious brain fog and mind-numbing fatigue. In the last 2 weeks I've started getting pain with my ocular migraines. I've lost 23 pounds over the last 16 months and I really can't spare any more.
My diet is quite restricted at this point, but I am unsure if anything I eat is actually safe. That being said, I haven't yet dropped gluten (gasp!). I know I probably need to take that step, I guess I just figured since I seemed to achieve remission before while eating tons of bread, pasta and muffins, that I must be an anomaly in that department. I'm seriously questioning that line of thinking now. I tested negitive for celiac in 2007 with both the blood test and the small intestine biopsy, but I know I could be sensitive to gluten, anyway. I haven't had any dairy that I am aware of since November. Also, I recently started learning about histamine triggers in food and am thinking that could definitely be playing a role, so I'm trying to tweak some things from that standpoint. I am seriously considering EnteroLab and MRT testing, but really don't know if we can afford it right now. The flip side is that with a 2-year-old and a 3-year-old who both have some issues of their own that I'm constantly helping them with, I have very little time to focus on tracking down what all of my food sensitivities and other triggers might be, so I definitely see the value in having test results that could give me a head start on healing.
So, for anyone who made it all the way through this incredibly long and rambling post (sorry, guys!): any advice or wisdom for me?
Newbie hoping for some guidance...
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi,
Wow! Your symptoms and pattern of reactions are very similar to mine, starting with the alternating diarrhea/constipation cycle, and including the acephalgic migraines (painless ocular migraines), and peripheral neuropathy (paresthesia, or tingling in extremities).
To cut to the chase, in my case the acephalgic migraines were apparently due to monosodium glutamate, but the basic problem can be traced to the same source of most of your other symptoms, namely gluten (just as you are beginning to suspect). Gluten is a very sinister enemy. It wreaks havoc within our digestive system, all the while feeding opiates into our brain to make us continue to crave it, and it manages to deceive us into thinking that something else in our diet (or in some cases, everything else) is the problem.
Assuming that your doctors have recently ruled out pernicious anemia (or some other cause of a vitamin B-12 deficiency), the peripheral neuropathy is almost certainly due to gluten damage in the brain. Early on (IOW if treated soon enough by a GF diet), the damage can be reversed, but in my case it went on long enough to cause extensive neurological damge. So for over 4 years now, I have taken a prescription vitamin mix (of the active forms of vitamins B-12, B-9, and B-6) known as Metanx. This product is usually prescribed for diabetics who develop peripheral neuropathy, but is seems to work just as well for gluten-induced peripheral neuropathy. The problem is that precious few neurologists (I haven't found a single one yet) are even aware that gluten can cause peripheral neuropathy. This issue is well researched and the information has been available in neurological journals for over 10 years now, but apparently neurologists are in no particular hurry to update their education.
See the link below for more information. In my case for example, I was mistakenly (I'm pretty sure the diagnosis is incorrect) diagnosed with Parkinson's disease, because gluten can cause virtually all of the symptoms that are diagnostic of Parkinson's disease (including gait and balance issues).
Gluten sensitivity as a neurological illness
So if I were in your situation, obviously the first thing that I would do is to ditch the gltuen, and hope that everything eventually resolves. It will take time, because the damage done to the intestines by gluten is slow to heal, but the right diet will definitely allow your digestive system to heal. If all the symptoms don't resolve, Metanx might help with some of them. Another thing that the Metanx will help is endothelial dysfunction. I believe that this is another of my issues (also attributed to gluten damage), and some of your cardiovascular symptoms sound suspiciously to me as though they may be related to endothelial dysfunction issues.
Welcome to our internet family. And please feel free to ask anything.
Tex
Wow! Your symptoms and pattern of reactions are very similar to mine, starting with the alternating diarrhea/constipation cycle, and including the acephalgic migraines (painless ocular migraines), and peripheral neuropathy (paresthesia, or tingling in extremities).
To cut to the chase, in my case the acephalgic migraines were apparently due to monosodium glutamate, but the basic problem can be traced to the same source of most of your other symptoms, namely gluten (just as you are beginning to suspect). Gluten is a very sinister enemy. It wreaks havoc within our digestive system, all the while feeding opiates into our brain to make us continue to crave it, and it manages to deceive us into thinking that something else in our diet (or in some cases, everything else) is the problem.
Assuming that your doctors have recently ruled out pernicious anemia (or some other cause of a vitamin B-12 deficiency), the peripheral neuropathy is almost certainly due to gluten damage in the brain. Early on (IOW if treated soon enough by a GF diet), the damage can be reversed, but in my case it went on long enough to cause extensive neurological damge. So for over 4 years now, I have taken a prescription vitamin mix (of the active forms of vitamins B-12, B-9, and B-6) known as Metanx. This product is usually prescribed for diabetics who develop peripheral neuropathy, but is seems to work just as well for gluten-induced peripheral neuropathy. The problem is that precious few neurologists (I haven't found a single one yet) are even aware that gluten can cause peripheral neuropathy. This issue is well researched and the information has been available in neurological journals for over 10 years now, but apparently neurologists are in no particular hurry to update their education.
See the link below for more information. In my case for example, I was mistakenly (I'm pretty sure the diagnosis is incorrect) diagnosed with Parkinson's disease, because gluten can cause virtually all of the symptoms that are diagnostic of Parkinson's disease (including gait and balance issues).Gluten sensitivity as a neurological illness
So if I were in your situation, obviously the first thing that I would do is to ditch the gltuen, and hope that everything eventually resolves. It will take time, because the damage done to the intestines by gluten is slow to heal, but the right diet will definitely allow your digestive system to heal. If all the symptoms don't resolve, Metanx might help with some of them. Another thing that the Metanx will help is endothelial dysfunction. I believe that this is another of my issues (also attributed to gluten damage), and some of your cardiovascular symptoms sound suspiciously to me as though they may be related to endothelial dysfunction issues.
Welcome to our internet family. 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.
Thank you so much for the warm welcome!
I have always believed that my mixed bag of symptoms were related somehow, but never could put the pieces together (and in my experience the doctors tend to treat you like a hypochondriac if you bring too many issues to the table at once). For a long time I wondered about dysautonomia, then when this colitis flare started it made me consider whether I could have a more system-wide mast cell problem. Either way it does seem that gluten must be a factor, because I've read of so many people who find at least partial relief of their symptoms by ridding themselves of it. Thank you for helping me fit a bit more of this puzzle together.
I have always believed that my mixed bag of symptoms were related somehow, but never could put the pieces together (and in my experience the doctors tend to treat you like a hypochondriac if you bring too many issues to the table at once). For a long time I wondered about dysautonomia, then when this colitis flare started it made me consider whether I could have a more system-wide mast cell problem. Either way it does seem that gluten must be a factor, because I've read of so many people who find at least partial relief of their symptoms by ridding themselves of it. Thank you for helping me fit a bit more of this puzzle together.
Welcome! Tex is our expert and he is so on target with his advise. Anyone on this forum who has seen improvement and/or remission has gotten rid of gluten from their diet. There are so many foods that we can react to and it could be overwhelming for you to deal with that while you have small children. Having the whole family go GF will help everyone feel better! If that doesn't seem like enough, then you can decide to tackle other food intolerances.
However,because you were dx with mastocytic colitis, mast cells probably have a lot to do with your condition. That means that you really should be avoiding foods with a lot of histamine in them. Google high histamine foods and you will get a list. It's a bit daunting at first. I know. I have histamine issues also. With your heart condition, I don't know if you can take OTC antihistamines, but they make a huge difference for me. The Pepcid is an H-2 antihistamine and drugs like Allegra/Claritin/Benadryl are H-1 antihistamines. As soon as I started taking them, my symptoms improved. I take an Allegra in the am and a Benadryl in the pm.
Tex just posted a Histamine article that I received from DR. Chris Kessler's web site. It's a great article that explains the whole histamine issue really well.
Anyway, welcome and please keep us posted on your progress
Leah
However,because you were dx with mastocytic colitis, mast cells probably have a lot to do with your condition. That means that you really should be avoiding foods with a lot of histamine in them. Google high histamine foods and you will get a list. It's a bit daunting at first. I know. I have histamine issues also. With your heart condition, I don't know if you can take OTC antihistamines, but they make a huge difference for me. The Pepcid is an H-2 antihistamine and drugs like Allegra/Claritin/Benadryl are H-1 antihistamines. As soon as I started taking them, my symptoms improved. I take an Allegra in the am and a Benadryl in the pm.
Tex just posted a Histamine article that I received from DR. Chris Kessler's web site. It's a great article that explains the whole histamine issue really well.
Anyway, welcome and please keep us posted on your progress
Leah
Hi, Leah - thank you so much for the advice and information. I saw the article earlier this evening - it was really helpful!
I only just recently started learning about histamine levels in food and am working out how to ditch the problem foods I'm eating without sacrificing too many more calories and nutrients. I have stopped making the big batches of chicken that I was eating on for several days. Now I keep the chicken in the freezer and only cook enough for that day. I also stopped using anything with vinegar in it. My diet is pretty limited at the moment and I feel sometimes like I've backed myself into a corner with it and can't figure out how to get out. I've wondered if doing the MRT testing, in addition to helping me identify triggers, might give me some ideas of foods that would be safe to try that I just haven't thought of.
I've always been extremely intolerant of medicines, but my heart makes it even more tricky. I would love to be able to do an H1/H2 combo, but H1 antihistamines ramp my heart rate way up and I can't find one that works for me. Even benadryl is a no-go. I know so many people who use it as a sleep aid, but it makes me absolutely climb the walls.
I'm hoping that the combination of going gluten and casein free and watching out for histamine/mast cell degranulators will go a long way to helping me, and I know my sons will benefit from the changes, also. Even before I came out of remission in October I was looking into GF/CF for them. My 3-year-old was diagnosed with autism last year and my 2-year-old has several sensory issues and developmental delays (but he's probably not on the spectrum, thank goodness). We hit early intervention hard with both of them and they have made huge strides so far, but I really want to see what diet can do for them. Getting sick again kind of derailed me for a while, but I'm ready to move forward and see where this takes us. I'm so glad I found this group to guide me through this somewhat overwhelming journey.
I only just recently started learning about histamine levels in food and am working out how to ditch the problem foods I'm eating without sacrificing too many more calories and nutrients. I have stopped making the big batches of chicken that I was eating on for several days. Now I keep the chicken in the freezer and only cook enough for that day. I also stopped using anything with vinegar in it. My diet is pretty limited at the moment and I feel sometimes like I've backed myself into a corner with it and can't figure out how to get out. I've wondered if doing the MRT testing, in addition to helping me identify triggers, might give me some ideas of foods that would be safe to try that I just haven't thought of.
I've always been extremely intolerant of medicines, but my heart makes it even more tricky. I would love to be able to do an H1/H2 combo, but H1 antihistamines ramp my heart rate way up and I can't find one that works for me. Even benadryl is a no-go. I know so many people who use it as a sleep aid, but it makes me absolutely climb the walls.
I'm hoping that the combination of going gluten and casein free and watching out for histamine/mast cell degranulators will go a long way to helping me, and I know my sons will benefit from the changes, also. Even before I came out of remission in October I was looking into GF/CF for them. My 3-year-old was diagnosed with autism last year and my 2-year-old has several sensory issues and developmental delays (but he's probably not on the spectrum, thank goodness). We hit early intervention hard with both of them and they have made huge strides so far, but I really want to see what diet can do for them. Getting sick again kind of derailed me for a while, but I'm ready to move forward and see where this takes us. I'm so glad I found this group to guide me through this somewhat overwhelming journey.
You're welcome. You definitely have a lot on your plate. Try to remember that it takes a long time for the gut to heal, so be patient if you can. I haven't done MRT, but I know that many people have found it to be very helpful in identifying foods that they wouldn't have thought to add or subtract.
Good luck
Leah
PS the website that the histamine article is on is a very good site. You may want to delve into some of the other articles and get on the their e-mail list so you can get the latest updates ( considering your children's' issues). Food can be a powerful medicine :)
Good luck
Leah
PS the website that the histamine article is on is a very good site. You may want to delve into some of the other articles and get on the their e-mail list so you can get the latest updates ( considering your children's' issues). Food can be a powerful medicine :)
Hi, You and I can both add fibromyalgia to the above list. I can also add a chronic cough coming from deep within my gut.The main symptoms for me right now are abdominal pain in several locations that comes and goes, discomfort while eating and especially after I eat (even when I don't eat much), joint pain, serious brain fog and mind-numbing fatigue. In the last 2 weeks I've started getting pain with my ocular migraines.
My short story is that adhering to a very strict diet, including the complete elimination of gluten, has helped a lot.
Welcome!
DJ
Thank you for the welcome, DJ!
I have been reading board archives feverishly for the last several days to get a handle on making the diet transition. I am dropping gluten, dairy (I've been pretty much dairy-free since October, anyway) and also soy, yeast and other high histamine foods. I'm hoping these changes will get me to where I want to be.
Wish me luck!
I have been reading board archives feverishly for the last several days to get a handle on making the diet transition. I am dropping gluten, dairy (I've been pretty much dairy-free since October, anyway) and also soy, yeast and other high histamine foods. I'm hoping these changes will get me to where I want to be.
Wish me luck!