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.
Your diagnosis is very interesting. You've resolved your LC, but still have ME. It's looking more and more like those of us with recalcitrant MC have a mast cell problem. We think we're still battling MC, but in reality, we're dealing with mast cells and need to redirect our efforts towards reducing our histamine intake.
You've refined your diet so well; the only suggestion I can make is to eliminate cinnamon and any other high-histamine spices you may be using. It seems like the amount we use is too small to make a difference, but they must be listed for a reason.
Mary Beth,
Thank you for the link you provided. Like Monique, I noticed some differences from previous lists. This one allows mangos; others do not. I guess in the end, we have to go by how our bodies react. Luckily for me (I think ), I get mouth sores within a couple of hours of eating something high in histamines, so I can tell pretty quickly when I've erred.
Gloria
You never know what you can do until you have to do it.
Kari wrote:I brought along your book, Tex, and he said he would order it for the clinic.
Wow! Awesome!
You know, looking at your prescribed treatment program (antihistamines+), I can't get the tricyclic antidepressants out of my mind. I wonder if this has ever been tried as a treatment for ME? I'm not sure if you read my post in response to Monique's observation about Elavil, so I've repeated it here for your consideration:
Monique wrote:'ll venture to say that you don't have histamine issues because you take Elavil. I am certain of it. Elavil is the only thing that calms down my histamine issues.
You are right on target, Monique. In fact, SINEQUAN (doxepin hydrochloride) and Elavil (amitriptyline) are the two most powerful antihistamines known to medical science. Believe it or not, Elavil is about 800 times more potent than diphenhydramine hydrochloride, otherwise known as Benadryl.
And doxepin hydrochloride is about 4 times more potent than amitriptyline hydrochloride, so that makes it about 3,200 times more powerful than Benadryl. So it's no wonder that the tricyclic antidepressants can have a powerful effect on mast cell issues (and of course, MC).
Love,
Tex
Furthermore, all tricyclic drugs (with the exception of desipramine hydrochloride) are more potent as antihistamines than they are for the reason why they are typically prescribed (namely to block the neurotransmitter acetylcholine in the brain). This suggests that dosage rates too low to have a significant effect as an anticholinergic, might still be very effective as an antihistamine, thus possibly minimizing the risk of side effects. I'm thinking less than 10 mg per day, whereas typical starting doses for treating depression run from 25 to 100 mg per day, and upwards.
I'm not suggesting that you should immediately try to talk your doctor into writing a prescription, but you might want to keep it in the back of your mind, in case the OTC antihistamines don't seem to get the job done, or you eventually develop a tolerance for them. Of course, you would eventually be very likely to develop a tolerance for Elavil (or some other tricyclic antidepressant), also, but starting at such a low dose offers plenty of room for increasing the dosage as tolerance develops. Anyway, this might provide you with some additional options for long-term control.
IMO, one should postpone using this class of medications, and view them as sort of a last resort option, because they are extremely difficult to discontinue, after using them for while. They are very powerful, though. It would be interesting to know your doctor's thoughts (or Dr. Lewey's opinion) on this possible treatment option for ME.
Love,
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.
Tex - you never seize to amaze me - you're certainly on a mission, and all of us here are the fortunate beneficiaries of your relentless research and original thoughts. I do remember reading about Elavil here and seem to connect Carol to that conversation, but it certainly did not come to mind as a possibility for my own treatment plan. Your logic sounds impeccable to me, and I will not hesitate to try that option if all else fails.
When I have a chance, I will mention it to my GI (Dr. Lawrence). He works with several other GI's in a clinic called Rocky Mountain Gastroenterology Group. Incidentally, he did mention that I should try doubling the recommended dose of OTC anti-histamines, which kind of goes along the lines of your thinking.
It seems that so many of us here have mast cell issues, and likely have undiagnosed ME as I did, so focusing on possible treatment plans for it is a very worthwhile endeavor - your efforts are and will continue to be greatly appreciated by so many of us.
Monique - thanks for your wishes - I'm finally starting to feel a bit better :). It sure would be nice if there was a simpler diagnostic test for colitis instead of the horror of a colonoscopy.
Gloria - because of your symptoms, I would be willing to bet that you have resolved your MC and are now dealing with ME instead. Thanks for remembering to mention cinnamon. I used to boil apples and pears with it, but had stopped after realizing that it is high in histamine :(.
Love,
Kari
"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
Frankly Kari I was puzzled when I read your new rx. Gastrocom (which is really pricey) and a rotation of all those anti-histamines...Couldn't figure out why you weren't on Elavil. I assumed (wrongly) that you doc must know about elavil and that, perhaps, it was better than elavil. Since I know of no one here who takes gastrocom...there are a few of us who take elavil: Carol, me, Terri and we have discussed it many times.
I was prescribed Elavil from the very beginning of my dx. I kept trying to get off of it because of my persistent repulsion of drugs. Alas, I can't live without it. I have surrendered.
For me it is the only thing that works. As Tex stated, it is so much more powerful than the anti-histamines. Anti-histamines have not worked for me. They have worked marginally and then I become symptomatic again. I only take 10 mg, which is the smallest dose available and it works. I don't indulge in high histamine foods even though I probably could. (Not sure about that one, though).
And the price? 10 bucks for 3 months.
This is surely something you should discuss with your doc on your next visit.
Hope you feel better from the horrific colonoscopy. It takes me a week or more to recover and it leaves me dehydrated and weak. Last time I insisted on an IV of electrolytes pre-treatment and they did. I recovered much faster.
I have eliminated cinnamon too :-(
Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
Wow Monique - that's quite amazing testimony for Elavil. I didn't realize it was prescribed for MC. Do you feel that between Elavil and watching your diet you are able to control all your symptoms? Would appreciate if you could elaborate a bit about your experience, or alternatively, point me to a thread where there is some more detailed information. I don't always get around to reading everything here. Elavil is sounding more and more intriguing, but I have to admit it worries me that it's difficult to get off.
Love,
Kari
"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
I can tell you unequivocally that without elavil, I am bedridden. I am so nauseated I can't function. And I don't eat either. I started eating when I went on elavil. I had gone down to 95 lbs. I had skin on bones. It wasn't a pretty sight. Several people thought I was dying. Elavil calmed down my gut and I started eating again. No nausea, nothing. I follow the anti-histamine list that Jean provided us and I am good. I also take mesalamine which is an anti-diarrheal. Sometimes I am going to try to reduce the dose of mesalamine and see if I can stay without it.
All my symptoms are related to mast cell issues. I never get D.
I propose that you start with 10 mg. Now 10 mg is not good if you were actually taking it for depression. The standard prescribed dose is 25 mg minimum. Ten milligrams calms the gut. It is prescribed for IBS as standard therapy as well. I am told that 10 mg is really a very minimal dose and you shouldn't concern yourself with it. Elavil works on serotonin and I understand that something like 80% of the serotonin we have is located in the gut and the rest in the brain.
I am not concerned about getting off of it. I tried it and I revert back to nausea and sickness. When I went off, I cut my pill in two for a week then eliminated it altogether. It wasn't difficult at all except for the symptoms retuning en masse after 3 weeks without it.
So that's my experience. Terri (tiras) has been on it (25 mg) for over 20 years. And she swears by it.
Love,
Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
Thank you so much for taking the time to write a thorough response. I'm getting more and more convinced to "try" Elavil. I say "try" because I am so tired of having my hopes sky high, and then feeling crushed when a new approach doesn't work for me. The wild card in dealing with our crazy symptoms seems to be individual differences.
Thanks again.
Love,
Kari
"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
You're welcome. If you get it, flag me down so that I can tell you when it is best to take it so that you don't spend half of your mornings half asleep. The other thing about elavil is that I don't have any insomnia anymore. It is a great sleeping aid. I sleep 8-9 hours without getting up at 3 a.m and not being able to go back to sleep (which was my usual pattern).
Love,
Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
I've been taking Elavil for 20 years...25mgs. I was prescribed it for chronic headaches and insomnia. I have developed a tolerance to the drug as it no longer really works near as well as it used to but apparently since I haven't had D since September that the anti-histamine properties I have not developed a tolerance to and would not require more of the drug. I have had D on this drug though on and off for 20 years. Never understood why I was so prone to getting D. However it did help with the nausea I used to get and the stomach tremors. I find it odd that if this drug is controlling any histamine issues that I MAY have, that I have never required more of it. I think with me it was gluten and beta blockers that caused my D. My vitamin D levels are around 80 and will always take the Elavil and I do believe they both help me. So I'm glad someone mentioned the Elavil to you in case the OTC stuff doesn't work. But just so you know, it's not an easy drug to get off of...I'm on it for life!
I also take B-12 as I'm a little low. I take the form that dissolves in the mouth and have no issues with it. So if it dissolves in the mouth, does it still go through the GI tract? I feel like I'm asking a stupid question here.
Good luck and so happy to hear you no longer have LC. I fear the colonscopy as I'm afraid it would put me in a D flare and I couldn't handle that again.
Keep us updated!
PS: Just fyi....I eat a lot of histamine foods...I only react to gluten and beta blockers, maybe dairy if I was brave enough to try it, and overindulging in sugar. So either Elavil is doing a dynamite, miraculous job on me or I don't have Mast cell issues. I don't think I'll ever know!
Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
I want to second what Terri says about the difficulty of getting off Elavil. I took it many years ago for depression. I don't remember the dosage I was on but it was more than 10mg. I remember that it gave me back my appetite and helped me sleep although I am not so sure it helped with the depression. Getting off it was literally a nightmare. Missing one night's dose would make me feel awful. I had to wean off it very slowly. I had begun to feel as if the problem of getting off it was worse than the depression it was meant to treat. I am glad that people here have found it very helpful in their recovery and maybe a small dosage does not present as much of a problem but don't try it thinking it is a benign drug. The problem of stopping Elavil is very real and can be very unpleasant.
So true Jean....one night without it and I'm good for nothing the next day. I was started out on 12.5 mg for about 3 months, then neurologist increased to 25 mgs after that. Worked miraculously for my headaches so thought I'd taper off. Doctor said..."sure just stop taking them". Didn't even to tell me to wean off the stuff. Felt awful and dealt with it but just couldn't get over the withdrawals. Doctor was stumped to why I was having these symptoms....saying the drug was only habit forming and not addicting. Whatever. So hopefully on lower dosages there won't be a problem getting off but finding it hard to believe. The only time I was able to get off successfully was when I got pregnant...thank goodness for that! After my son came, so did my anxieties and had to get back on the drug. That was 15 years ago. I've had better luck in the past getting off Librium than Elavil. I honestly think this drug has caused Tachycardia for me though no doctor will up and tell me that. Been taking it way too long. I sure hope it's helping my gut or it's a totally useless drug for me as it no longer helps me sleep or gets rid of my headaches. My cardiologist wanted to up the dosage back when I was having the D. I told him No way....got to be another way...and luckily there was!
Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
No doctor warned me about the problems of stopping either. I too went cold turkey initially and it was awful. Literally couldn't function. Eventually I just had to figure out how to wean off for myself. No way would I ever take it again.
yeah...the second time I tried to get off I knew better and slowly weaned down....never felt 100% though but then immediately got pregnant and had no issues getting off of it totally. Something about those pregnancy hormones! Yeah...wish I wasn't stuck on it so hopefully it's doing something for me! The idea of having a mast cell issue is not a pleasant thought but if I do and the med is working for that then I'm grateful. Glad you got off it successfully since it apparently wasn't working for you. Not the best med for depression. Sounds like you do awesome with your diet. How long have you been in remission?
Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
I took Elavil in the 80's when the tricyclics were the only game in town. I believe that my mood issues went away when I started eating Paleo about 10 years ago. I wish I had stuck to it more closely and not allowed dairy to sneak back in and then there were all those eggs and chicken that did me no favors but still I am no longer troubled by either depression or anxiety.
I do not consider myself to be in remission. What is good is that I no longer have D. In fact I tend more towards c and am working on ways to manage that. Plus I have weird neuro-muscular issues that are hard to describe so I generally don't talk about them. These leave me uncomfortable 24/7. As the constant D becomes a memory I am learning how to better interpret this discomfort so that I am not constantly anxious that it foretells another mad dash to the bathroom. I guess I will be willing to say I am in remission when I can get up in the morning and out the door with no more than a passing thought to my intestinal tract. I still have to give myself several hours in the morning before it feels safe to leave the house.
Jean...thanks so much for sharing that with me. Interesting about the Paleo diet and all it can do for you. I would like to end up there one day. One week I gave up rice and corn products and lost a pound and freaked....just can't overload my gut with too many veggies and the meat gets blah tasting to me real quick...not much of a meat eater till I got this disease. I've been eating more beef as I find it tastier than my plain ole chicken I've been eating too much of. Afraid though that the beef will give me issues with my cholesterol.
Oh, but isn't it nice to say D is a thing of the past...same for me! I'm just now getting to the point where I don't really think about it anymore. I'm like you and tend to get sluggish every now and then...that's when I up the fiber. It helps but tend to get bloated. I'm sorry you are having other issues. I do as well as my TMJ pain can sometimes be chronic and now just last week I'm dealing with a chronic eye condition called Blepharitis. Had it 6 years ago...now I understand why I can't wear contacts! On an eye hygiene regimen for the rest of my life now as this pain is not something I want to have every day. It's getting better but just started the treatment yesterday. I seem to trade one thing for another.
I applaud your diet....Paleo seems tough to do especially for me...when the Elavil has me craving the bad stuff. Will have to try it though ...especially if there is a chance I could get rid of all this anxiety I have...would be worth a little weight loss I suppose!
Take Care,
Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
), I get mouth sores within a couple of hours of eating something high in histamines, so I can tell pretty quickly when I've erred.
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