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Hi friends,
A bunch of questions/thoughts:
1. I think it's time to start entocort again. I've been eating only chicken and potatoes and eggs, a tiny bit of applesauce, a little fish and pork, and coconut oil — and that's it! — since I got back from my vacation last week. But I'm getting worse, not better. The fire hose D continues, and I'm up to about 6-8x day and climbing. This flare has been going on since August, and I had it fairly under control (Norman was back) within about a month or 6 weeks, but shortly before leaving for vacation, things started getting worse again. By the end of my vacation I was quite concerned about the return of the D, and now, even on this very limited diet, I'm not seeing any improvement. I must have quite a bit of inflammation and any food is adding to the irritation. Since I'm trying to get pregnant, I need to make sure that I'm absorbing nutrients, which clearly I'm not right now. Do you think I'm on the right track to see if I can start the entocort again?
2. If it seems like the medication route is the wisest path, do I need to find a gastroenterologist (I just hate them!)? Or is it worth trying to convince my primary care doctor to prescribe it for me? And dosage? I remember that people have started at 9 mg and tapered down to 3, and then completely weaned off. I know there's a 22-page long discussion on tapering off, but general recommendations for how long to stay on 9 mg?
3. This mast cell thing is interesting — I spent hours yesterday and this morning reading about it. Still quite confused about it, though. Tex, you said that you think you had a mast cell issue — so now that you're in remission do you think that the medication helped you take care of that issue, too? If I do have a mast cell issue, how do I test for it and treat it? Do I need an allergist? Also, I know some people said to take Claritin or Zyrtec, but I'm very, very sensitive to medication like benadryl. It doubles my heart rate and gives me terrible anxiety and insomnia. I don't know if Claritin/Zyrtec is like that — has anyone had any side effects from it? Finally, if the mast cell issue is a big part of why I'm having so much trouble, maybe it makes sense to get tested for that first before starting entocort? On the other hand, that will take awhile to make the appointment and ge the results, and I just need to stop the D.
4. I'm not taking immodium because I think it just masks the issue. Agree, disagree?
5. It seems like my reactions are both immediate and delayed. For example, if I eat any fiber right now, I get cramps right away, within a few hours. But if I eat something problematic that doesn't give me cramps, I don't see a reaction until a few days later, which makes it very hard to know what the problem food is. In other words, my reactions to food are changing . . . I can't simply rely on cramping/bloating to identify problem foods anymore.
I think that's it for now! Thank you in advance for your time!
Elizabeth
I think it's time for meds
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Elizabeth,
I can't help with all your questions, but - if Imodium stops the D, I would take Imodium. I think nothing is more important than stopping fire-hose D. You are right that Imodium doesn't fix the underlying problem - but the diarrhea you're having isn't the same as purging a noxious bug after food poisoning. It's debilitating in itself, and drains your body of vitality and fluids. In general, I'm not a big fan of symptom-suppressing, but this is a big exception for me.
I definitely have had cramps/bloating sometimes, but not always. I've also had D without cramps/bloating. And sometimes I've had bloating, but without D the next day (especially in the beginning, with rice or other starchy foods). I agree, it does make it hard to be sure you've identified the culprit!
Some of us tolerate either Claritin or Zyrtec, but not the other one. I can't think of a safe way to learn whether you could tolerate either of those, and given your experience with Benadryl, I don't blame you for being cautious. (And, of course, it could have been a non-active ingredient, not the anti-histamine itself, that triggered your reaction - frustratingly enough.)
I don't know whether this is right or wrong - but when I am having the kind of D you are describing, my Number One priority is to slam the brakes on that.
I hope you can, and soon,
Sara
I can't help with all your questions, but - if Imodium stops the D, I would take Imodium. I think nothing is more important than stopping fire-hose D. You are right that Imodium doesn't fix the underlying problem - but the diarrhea you're having isn't the same as purging a noxious bug after food poisoning. It's debilitating in itself, and drains your body of vitality and fluids. In general, I'm not a big fan of symptom-suppressing, but this is a big exception for me.
I definitely have had cramps/bloating sometimes, but not always. I've also had D without cramps/bloating. And sometimes I've had bloating, but without D the next day (especially in the beginning, with rice or other starchy foods). I agree, it does make it hard to be sure you've identified the culprit!
Some of us tolerate either Claritin or Zyrtec, but not the other one. I can't think of a safe way to learn whether you could tolerate either of those, and given your experience with Benadryl, I don't blame you for being cautious. (And, of course, it could have been a non-active ingredient, not the anti-histamine itself, that triggered your reaction - frustratingly enough.)
I don't know whether this is right or wrong - but when I am having the kind of D you are describing, my Number One priority is to slam the brakes on that.
I hope you can, and soon,
Sara
Elizabeth,
Mast cells issues were pretty minor for me, while I was reacting, (as far as I'm aware, and I was never sure whether they were actually a problem, or not), and the only problems I have with them now, are associated with hay fever, (not GI issues). I take an antihistamine whenever my hay fever gets out of hand, but I've never taken any for GI issues. I mostly avoid foods that are high in histamines, but I don't avoid them 100%.
I would try asking my PCP for a script for Entocort, first. Most PC docs will do that, if a patient has a bona fide diagnosis for MC, especially if the patient has had a prescription from their GI doc, previously. Some won't, however, if they are totally unfamiliar with the drug, or otherwise afraid of prescribing corticosteroids. You can order it yourself, without a prescription, (a generic), from a foreign pharmacy, but it can take up to 3 weeks for shipping, depending on how long it has to sit in customs, before they approve it and send it on for delivery.
http://www.alldaychemist.com/1447-budez-cr-3mg.html
If you want to pursue a mast cell diagnosis, there are only a handful of doctors in this country qualified to treat mast cell issues, at present, because it's such a recent discovery. Most allergists don't savy mast cell issues in the digestive tract, and very few GI docs have even heard of it, let alone know how to treat it. I can't recall where you live, but currently, the center of mast cell research seems to be at Brigham and Women's Hospital, in Boston. They have several qualified doctors, who have studied under Dr. Castell:
http://physiciandirectory.brighamandwom ... id=0000698
Very, very few GI docs understand mast cell issues. We have a short list, if you are interested:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=14421
Here is a list of foods that can cause mast cell issues:
http://www.michiganallergy.com/food_and_histamine.shtml
Tex
Mast cells issues were pretty minor for me, while I was reacting, (as far as I'm aware, and I was never sure whether they were actually a problem, or not), and the only problems I have with them now, are associated with hay fever, (not GI issues). I take an antihistamine whenever my hay fever gets out of hand, but I've never taken any for GI issues. I mostly avoid foods that are high in histamines, but I don't avoid them 100%.
I would try asking my PCP for a script for Entocort, first. Most PC docs will do that, if a patient has a bona fide diagnosis for MC, especially if the patient has had a prescription from their GI doc, previously. Some won't, however, if they are totally unfamiliar with the drug, or otherwise afraid of prescribing corticosteroids. You can order it yourself, without a prescription, (a generic), from a foreign pharmacy, but it can take up to 3 weeks for shipping, depending on how long it has to sit in customs, before they approve it and send it on for delivery.
http://www.alldaychemist.com/1447-budez-cr-3mg.html
If you want to pursue a mast cell diagnosis, there are only a handful of doctors in this country qualified to treat mast cell issues, at present, because it's such a recent discovery. Most allergists don't savy mast cell issues in the digestive tract, and very few GI docs have even heard of it, let alone know how to treat it. I can't recall where you live, but currently, the center of mast cell research seems to be at Brigham and Women's Hospital, in Boston. They have several qualified doctors, who have studied under Dr. Castell:
http://physiciandirectory.brighamandwom ... id=0000698
Very, very few GI docs understand mast cell issues. We have a short list, if you are interested:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=14421
Here is a list of foods that can cause mast cell issues:
http://www.michiganallergy.com/food_and_histamine.shtml
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.
Thanks, Tex. I actually live in Boston, so it's great to know there are such fantastic resources in my backyard. Is this a fairly rare case to have mastocytosis? Or is it so new that it's not really that clear yet?
Thanks, too, Sara, for the advice on stopping the D. I checked the ingredients of my generic brand immodium, and here's what's in it:
Alcohol (0.5%), Benzoic Acid, Citric Acid, Flavor, Glycerin, Propylene Glycol, Purified Water, Sodium Benzoate, Sorbitol, Sucrose
But citric acid and sorbitol are problematic for me. Has anyone found an immodium alternative that is free of the most problematic fillers? For example, I know that Immodium is corn-based, which is also a problem for many of us.
Thanks,
Elizabeth
Thanks, too, Sara, for the advice on stopping the D. I checked the ingredients of my generic brand immodium, and here's what's in it:
Alcohol (0.5%), Benzoic Acid, Citric Acid, Flavor, Glycerin, Propylene Glycol, Purified Water, Sodium Benzoate, Sorbitol, Sucrose
But citric acid and sorbitol are problematic for me. Has anyone found an immodium alternative that is free of the most problematic fillers? For example, I know that Immodium is corn-based, which is also a problem for many of us.
Thanks,
Elizabeth
Mastocytosis, (systemic), is rather rare, but it appears that mastocytic enterocolitis, (confined to the intestines), is much more common. Also, it's possible to have mast cell problems even with a normal mast cell count. Several members here seem to have that problem. In those cases, mast cells are a problem simply because they degranulate far too easily. Degranulation in such situations is usually caused by foods high in histamines, or certain foods that promote the degranulation of mast cells.
The liquid form of Imodium contains several undesirable ingredients, but I don't see any corn in the caplet form of branded Imodium A-D:
The liquid form of Imodium contains several undesirable ingredients, but I don't see any corn in the caplet form of branded Imodium A-D:
TexColloidal silicon dioxide, dibasic calcium phosphate, D&C yellow #10 aluminum lake, FD&C blue #1 aluminum lake, magnesium stearate, microcrystalline cellulose.
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,
I've wondered if the practice in Michigan that authors the histamine food list you just posted would understand the relationship of mast cells to gastrointestinal problems. I see that they specialize in allergy, asthma and immunology. I've already checked to see if they're in my insurance plan, and they're not.
Gloria
I've wondered if the practice in Michigan that authors the histamine food list you just posted would understand the relationship of mast cells to gastrointestinal problems. I see that they specialize in allergy, asthma and immunology. I've already checked to see if they're in my insurance plan, and they're not.
Gloria
You never know what you can do until you have to do it.
I hope there will (soon?) be an expanded understanding among primary-care docs about the role of mast cells. I clearly had some things going on, when first and most fiercely reacting, that involved mast cells. And that's become a lesser issue for me now. I would guess that this falls in the area of a mast-cell activation issue, and that I am not the only person who has some variability in the reactivity of those mast cells. How that relates to MC, gluten sensitivity, and the autoimmune/inflammatory 'crash' that so many of us experiences when our symptoms are at our worst... I hope someone is pondering this, out there in the world of mast-cell understanding.
I've been thinking for a while - could we get some sympathetic doc on board to help us work with a compounding pharmacy to provide a version of Imodium that does not have propylene glycol, weird colorings, etc.? Or maybe Bismuth preparation with salicylates? I'd love to have a non-pink, non-salicylate Pepto alternative in my toolkit. And maybe I'd have a more positive experience of Imodium, if not for the other inactive ingredients.
I've been thinking for a while - could we get some sympathetic doc on board to help us work with a compounding pharmacy to provide a version of Imodium that does not have propylene glycol, weird colorings, etc.? Or maybe Bismuth preparation with salicylates? I'd love to have a non-pink, non-salicylate Pepto alternative in my toolkit. And maybe I'd have a more positive experience of Imodium, if not for the other inactive ingredients.
Gloria,
They might, but I don't see anything on their website that offers much hope for that. The only tests they mention for food "allergies", for example, are IgE-based tests.
Tex
They might, but I don't see anything on their website that offers much hope for that. The only tests they mention for food "allergies", for example, are IgE-based tests.
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.
Sara,
You don't even need a doctor to do what you are requesting. Loperamide HCl is not a prescription drug. All you have to do is go to a compounding pharmacy and request a formulation of 2 mg of Loperamide HCl per capsule, and pick whatever inert ingredients you want, (or work that out with the pharmacist). You should be able to select a "safe" capsule, also. If the pharmacist insists that a doctor's prescription is necessary, (since it is a drug), your own PCP should be willing to write a script for it, after you work out the ingredient list with the pharmacist.
For the bismuth subsalicylate, all you need is 262 mg of bismuth subsalicylate per capsule, and have the pharmacist use whatever inert ingredients you want. If you choose to go the liquid route, you just need to mix it with 262 mg of bismuth subsalicylate per 15 ml of liquid in the final solution. (15 ml is one tablespoonful).
Tex
You don't even need a doctor to do what you are requesting. Loperamide HCl is not a prescription drug. All you have to do is go to a compounding pharmacy and request a formulation of 2 mg of Loperamide HCl per capsule, and pick whatever inert ingredients you want, (or work that out with the pharmacist). You should be able to select a "safe" capsule, also. If the pharmacist insists that a doctor's prescription is necessary, (since it is a drug), your own PCP should be willing to write a script for it, after you work out the ingredient list with the pharmacist.
For the bismuth subsalicylate, all you need is 262 mg of bismuth subsalicylate per capsule, and have the pharmacist use whatever inert ingredients you want. If you choose to go the liquid route, you just need to mix it with 262 mg of bismuth subsalicylate per 15 ml of liquid in the final solution. (15 ml is one tablespoonful).
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 are a genius! I just assumed that I'd need a doctor's Rx to go that route with a compounding pharmacy. I was thinking of another Bismuth formulation (other than Bismuth subsalicylate - but that was more theoretical, as occasional Pepto is OK for me - hideous though that pink color is). I had researched one, at some point - I'll dig that info up and see whether there's something in this notion...
Thanks so much -
Love,
S
Thanks so much -
Love,
S
Elizabeth,
You're most welcome. I hope it works like a charm. I can't actually take any credit, though - it was Sara's idea.
Tex
You're most welcome. I hope it works like a charm. I can't actually take any credit, though - it was Sara's idea.
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 Gloria,
Compound Pharmacies are usually the old "mom and pop" drug store. Although some of the big ones like CVS are doing it now! Just call around your area and ask if they have compounding pharmacist. I use one almost everyday because of my job and they will make just about anything you need. Its good because you can have them make things in liquid, gel caps and even suppositories.
I hope that helps you
Robin
Compound Pharmacies are usually the old "mom and pop" drug store. Although some of the big ones like CVS are doing it now! Just call around your area and ask if they have compounding pharmacist. I use one almost everyday because of my job and they will make just about anything you need. Its good because you can have them make things in liquid, gel caps and even suppositories.
I hope that helps you
Robin