Hi there. I’m newly diagnosed with LC and have been reading here for about a week. I think I’m ready to ask some questions. I’m puzzled as to how I got this, what’s related and which came first, the chicken or the egg. Maybe it will all make sense to you if you hear my history.
I have had a food sensitivity all of my life…a facial flushing that I called the “blotches” that would happen when I ate mainly acidic foods. Now that I look at lists of histamine rich or producing foods it contains a lot of them. No problem with the sensitivity until my 20’s when I added yeast alcohol or beer and then I developed psoriasis of the scalp. Five years after that appeared then I got psoriatic arthritis. I quit drinking and the psoriasis disappeared but not the arthritis. I struggled with it for twenty five years. In my 40’s I started Methotrexate and Motrin and stayed on those for 15 years. No problems with the stomach or gut other than a softer than normal stool once a day.
In 2010 I stopped those two meds and started with Enbrel injections. Loved it for my joints and stayed on it until last May. At that time I decided to see if I could go off of it and eat a clean, whole foods diet- mainly vegan…and control the inflammation that way.. I was good through the summer and got down to a healthy 120 pounds on my 54” frame. The middle of Oct. I had joint pain and swelling again and started back on a half shot of the Enbrel. I started to notice a noisy gut about this time….all the beans and veggies I previously could tolerate were making a lot of gas and gurgling noises or so I thought.
Four weeks after this and I can pinpoint the day and time- explosive WD started. I saw my GP who could only guess at a virus and gave me Imodium. It worked somewhat for about a month when I just quit taking it (I was convinced I had IBS and not a virus). I tried eliminating various foods and the D would wax and wane with no logical correlation. Remember I was mostly vegan so no dairy, no red meat, slight amounts of soy, no eggs, but some gluten in my morning Muesli, and all the blotches producing fruits and veggies that I have always loved. Four months passed and after I lost eight more pounds and had muscle wasting I went back to the doc and he sent me to a GI for a colonoscopy. They saw a lot of mucus and decided to take biopsies and so I got my LC diagnosis two weeks ago.
So in the past week I started taking Pepto, 6 tabs a day. I’m eating mainly cooked veggies and vegetable soups and 3 or 4 nights a week I have salmon since I can’t tolerate beans right now. The WD has gone from 10 to 1 or 2 after I quit binging on handfuls of nuts the first few days (so hungry). I gave up gluten after reading on this forum but it was no big deal to me, never have liked baked goods that much anyway. I just have trouble believing I have an intolerance to it since everything else that I am sensitive to I seem to love and crave. This is a girl that used to snitch chugs of vinegar from the cellar when I was a kid but my mother always knew since my face was flaming red. As a baby I got hives from orange juice and citrus as did my son when he was little….I passed on the blotches to him. I did notice joint pain after eating these foods the past 10 years but my rheumatologist thought it was just the swelling from salt in the same foods.
Do you think the MC is related to the histamine food intolerance or the Enbrel shots? Is it all the same problem or two different conditions and causes? I realize it’s all auto immune but at this point I don’t know what to take out of the diet and/or if I should continue with the Enbrel.
Sorry this got so long, it's all so complicated isn't it?
Nettie
Newby with LC and psoriatic arthritis.
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Nettie,
Welcome to our internet family. Yes, this is a complex disease, and you seem to have a case with a much more complex history than most of us.
The bad news is that we tend to crave the foods to which we are sensitive. In fact, wheat contains gluteomorphins that activate opiate receptors in the brain. IOW, gluten is actually addictive (and so is casein, in all dairy products by the way, since it contains casomorphins). More than half of us are sensitive to soy, so that makes getting enough protein to heal the intestines extremely difficult (if not impossible) on a vegetarian or vegan diet.
As far as I'm aware, Enbrel has not been proven by medical research to cause MC, but there are a number of patients who are very suspicious that the drug may have been implicated in their case.
http://www.ehealthme.com/ds/enbrel/colitis+collagenous
In addition, Motrin has long been known to be a trigger for MC for some patients.
We have a couple of members (who no longer post) whose MC was always aggravated whenever they received their anti-TNF treatments, (but they were taking one of the other anti-TNF drugs). I was unable to convince them that those drugs were causing their MC, but more and more evidence is surfacing to suggest that I was correct.
The reason why we can suddenly become sensitive to gluten (and other foods) when we develop MC, is because research shows that when the genes that predispose to MC are triggered, the genes that predispose to gluten sensitivity are also triggered in many/most cases.
Arthritic joint pain is a very common symptom with MC. It's possible that you might have had MC for many years, but just didn't display some of the symptoms that doctors recognize as associated with the disease. Doctors have a long way to go to understand this disease, and how to properly treat it.
Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
Welcome to our internet family. Yes, this is a complex disease, and you seem to have a case with a much more complex history than most of us.
The bad news is that we tend to crave the foods to which we are sensitive. In fact, wheat contains gluteomorphins that activate opiate receptors in the brain. IOW, gluten is actually addictive (and so is casein, in all dairy products by the way, since it contains casomorphins). More than half of us are sensitive to soy, so that makes getting enough protein to heal the intestines extremely difficult (if not impossible) on a vegetarian or vegan diet.
As far as I'm aware, Enbrel has not been proven by medical research to cause MC, but there are a number of patients who are very suspicious that the drug may have been implicated in their case.
http://www.ehealthme.com/ds/enbrel/colitis+collagenous
In addition, Motrin has long been known to be a trigger for MC for some patients.
We have a couple of members (who no longer post) whose MC was always aggravated whenever they received their anti-TNF treatments, (but they were taking one of the other anti-TNF drugs). I was unable to convince them that those drugs were causing their MC, but more and more evidence is surfacing to suggest that I was correct.
The reason why we can suddenly become sensitive to gluten (and other foods) when we develop MC, is because research shows that when the genes that predispose to MC are triggered, the genes that predispose to gluten sensitivity are also triggered in many/most cases.
Arthritic joint pain is a very common symptom with MC. It's possible that you might have had MC for many years, but just didn't display some of the symptoms that doctors recognize as associated with the disease. Doctors have a long way to go to understand this disease, and how to properly treat it.
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.
Nettie,
Interestingly, the members who I mentioned were taking another anti-TNF medication, were taking it to treat psoriatic arthritis. But experience shows that psoriasis and psoriatic arthritis are connected with gluten sensitivity. Even though these members adopted a gluten-free diet, their MC symptoms continued (IMO, because of the Remicade, or whatever they were taking at the time).
And you're correct — until we manage to get all of the gluten out of our system, and the antibody level goes down, and significant healing occurs, we seem to react to all sorts of foods, sometimes without rhyme or reason, because our intestines are hypersensitive due to all the inflammation.
Tex
Interestingly, the members who I mentioned were taking another anti-TNF medication, were taking it to treat psoriatic arthritis. But experience shows that psoriasis and psoriatic arthritis are connected with gluten sensitivity. Even though these members adopted a gluten-free diet, their MC symptoms continued (IMO, because of the Remicade, or whatever they were taking at the time).
And you're correct — until we manage to get all of the gluten out of our system, and the antibody level goes down, and significant healing occurs, we seem to react to all sorts of foods, sometimes without rhyme or reason, because our intestines are hypersensitive due to all the inflammation.
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.
Well if there is a lot of gluten in beer then I certainly agree that my psoriasis could have been due to that because it was so black and white in my case that a night of drinking would cause huge growth in the plaque and lesions on my scalp. When I got pregnant and quit drinking the psoriasis went into complete remission and so I decided not to drink anymore and it never came back. I do miss my morning Muesli so you are right about the addictive qualities of the gluten. Today I had scrambled eggs and a green smoothie but I really missed the chew factor.
I did look at my Enbrel shot yesterday before I took it and it contains sucrose and mannitol. I know both of those can be problem ingredients.....do you think they could cause some of the trouble that the other members experienced? The shot is sub Q whereas the Remicade and some of the others are administered in an infusion or IV. The other thing that occurs to me is just a theory but when taking the anti TNFs I have noticed that wounds heal so much more slowly, every minor scratch can get a little pink and slightly infected. Last year I got cellulitis from just a small scratch on my hand. It would stand to reason that the gut is going to heal much more slowly as well don't you think? I see my rhumatologist at the end of the month but I've already decided to wean down to a quarter dose starting next week and see how that goes. It is similar to weaning of the Endocort in that you want to go slow with it and you hope the body adapts without triggering a full blown tantrum that it's not getting the drug anymore.
I'm enjoying reading your book.....very helpful!
I did look at my Enbrel shot yesterday before I took it and it contains sucrose and mannitol. I know both of those can be problem ingredients.....do you think they could cause some of the trouble that the other members experienced? The shot is sub Q whereas the Remicade and some of the others are administered in an infusion or IV. The other thing that occurs to me is just a theory but when taking the anti TNFs I have noticed that wounds heal so much more slowly, every minor scratch can get a little pink and slightly infected. Last year I got cellulitis from just a small scratch on my hand. It would stand to reason that the gut is going to heal much more slowly as well don't you think? I see my rhumatologist at the end of the month but I've already decided to wean down to a quarter dose starting next week and see how that goes. It is similar to weaning of the Endocort in that you want to go slow with it and you hope the body adapts without triggering a full blown tantrum that it's not getting the drug anymore.
I'm enjoying reading your book.....very helpful!
Welcome Nettie.
It looks like you have done your homework and I'm glad that Tex chimed in right away. He is so helpful to us all.
I was going to concur with the gluten intolerance because the beer is a huge clue ( yes, it has gluten) and so is your arthritis. Many people who go gluten free are able to get rid of almost all their arthritis pain over time. It does take a while though for the antibodies to die and for your whole system to be rid of them. Gluten can hide in many place though ( like soy sauce), so read all labels carefully.
If you really want to know what you are intolerant to, you can send a specimen to Enterolab ( look up their website). It's costly, but will save you a lot of guess work.
When our guts are inflamed, it is very hard to heal if we continue to eat raw fruits and veggies or beans and legumes. Maybe down the road, you can add them back in.
If you miss the "chew factor", you could try some rice or corn Chex with almond milk some times for breakfast... or put your scrambled eggs in a corn tortilla.
Good luck and ask as many questions as you like
Leah
It looks like you have done your homework and I'm glad that Tex chimed in right away. He is so helpful to us all.
I was going to concur with the gluten intolerance because the beer is a huge clue ( yes, it has gluten) and so is your arthritis. Many people who go gluten free are able to get rid of almost all their arthritis pain over time. It does take a while though for the antibodies to die and for your whole system to be rid of them. Gluten can hide in many place though ( like soy sauce), so read all labels carefully.
If you really want to know what you are intolerant to, you can send a specimen to Enterolab ( look up their website). It's costly, but will save you a lot of guess work.
When our guts are inflamed, it is very hard to heal if we continue to eat raw fruits and veggies or beans and legumes. Maybe down the road, you can add them back in.
If you miss the "chew factor", you could try some rice or corn Chex with almond milk some times for breakfast... or put your scrambled eggs in a corn tortilla.
Good luck and ask as many questions as you like
Leah
-
Christine.
- Gentoo Penguin
- Posts: 260
- Joined: Mon Feb 20, 2012 1:15 pm
Nettie
I am one that "cured" my psoriasis by going gluten free. It was an unexpected side effect of avoiding gluten.
If you enjoy salads and fruit, just give it a few months and I'll bet you will be able to reintroduce them. Maybe not citrus. Sounds like that really doesn't work for you.
I have been at this for 14 or 15 months now and I am gluten, soy, egg (white) and dairy free. I thought maybe I could have some goat cheese sprinkles on my salad On Easter......nope! No D but a lovely mouth sore on the tip of my tongue. But, I may try a nibble of cheese again in 6 months or so.
So.. Once you have reached remission you can reintroduce lots of foods. Meanwhile, stay hydrated and eat lots of protein and calories.
Christine
I am one that "cured" my psoriasis by going gluten free. It was an unexpected side effect of avoiding gluten.
If you enjoy salads and fruit, just give it a few months and I'll bet you will be able to reintroduce them. Maybe not citrus. Sounds like that really doesn't work for you.
I have been at this for 14 or 15 months now and I am gluten, soy, egg (white) and dairy free. I thought maybe I could have some goat cheese sprinkles on my salad On Easter......nope! No D but a lovely mouth sore on the tip of my tongue. But, I may try a nibble of cheese again in 6 months or so.
So.. Once you have reached remission you can reintroduce lots of foods. Meanwhile, stay hydrated and eat lots of protein and calories.
Christine
Nettie,
The sugar alcohols cause D because they cannot be digested by the human digestive system, so they usually end up being fermented by bacteria in the colon (similar to what happens with lactose intolerance). They shouldn't cause an MC flare though (IOW, they shouldn't cause an autoimmune-type reaction), instead, the result should be osmotic D (MC typically causes secretory D, which is high-volume, watery D).
When healing is allowed to continue, if the connective tissue is damaged, then instead of replacing cells with clones, the damaged cells will be replaced by scar tissue. Of course, in many cases, both modes of healing are present. Anyway the point is, you are quite correct, immune system suppressants not only make us more vulnerable to infection, but they actually retard healing because the immune system is not allowed to do it's job at an efficient rate.
Thank you for the kind words about the book.
Tex
The sugar alcohols cause D because they cannot be digested by the human digestive system, so they usually end up being fermented by bacteria in the colon (similar to what happens with lactose intolerance). They shouldn't cause an MC flare though (IOW, they shouldn't cause an autoimmune-type reaction), instead, the result should be osmotic D (MC typically causes secretory D, which is high-volume, watery D).
Yes, you're right on target, and that happens because anti-TNF drugs suppress the immune system, and the immune system is in charge of healing. The immune system destroys damaged cells (by a process known as apoptosis), and cleans up all the debris so that new cells can replace them (provided that the connective tissue matrix is still intact. Until the "cleanup" phase of healing is completed, healing cannot progress. This also occurs with MC and other inflammatory bowel diseases when they are untreated or undertreated — they get stuck in the first phase of healing, and healing can go no further, so the damage continues to accrue.The other thing that occurs to me is just a theory but when taking the anti TNFs I have noticed that wounds heal so much more slowly, every minor scratch can get a little pink and slightly infected. Last year I got cellulitis from just a small scratch on my hand. It would stand to reason that the gut is going to heal much more slowly as well don't you think?
When healing is allowed to continue, if the connective tissue is damaged, then instead of replacing cells with clones, the damaged cells will be replaced by scar tissue. Of course, in many cases, both modes of healing are present. Anyway the point is, you are quite correct, immune system suppressants not only make us more vulnerable to infection, but they actually retard healing because the immune system is not allowed to do it's job at an efficient rate.
Thank you for the kind words about the book.
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 Christine and Leah for the additional advice. I did decide to send off for the Enterolab tests today, it would be helpful to know if I am sensitive to some of the additional foods as well so I did the 2 panels.
Boy wouldn't it be great if the arthritis is linked to all of this and I can treat all the birds with one stone (I have rosacea and chronic dry eye problems)....basically an autoimmune mess.
Good to know about the drugs Tex, going to try and get rid of those as soon as I can.
Boy wouldn't it be great if the arthritis is linked to all of this and I can treat all the birds with one stone (I have rosacea and chronic dry eye problems)....basically an autoimmune mess.
Good to know about the drugs Tex, going to try and get rid of those as soon as I can.