After 10 weeks of agony- I was just recently diagnosed with MC (collagenous). I also have GERD- but I've known that for years ;)
Since my diagnosis, I have decided to go gluten free.
I am on week 2.5 of 6 of Budesonide. Things seem to have been getting better over the last week and a half, since I started the whole gluten free living. YAY! Although it has brought up many conversations about hidden gluten between myself, my husband and his mother (we're a foodie family...)
However; I am curious how long it takes to feel the effects if you have ingested gluten (or something- I am thinking I may have dairy issues too). I finished my lunch about an hour and a half ago, and about 20-30 minutes after- I started getting awful stomach pains.
My husband swears it's the next meal after you've eaten something (or up to 48 hours- he's a chef- he is pretty adamant about this stuff. LOL) So is this what I ate for dinner (didn't have breakfast) or what I just ate?
I'm trying to understand as much as I can- but it's so much to take in.
Both meals were the same- with the exception of the salad dressing. I felt OK after dinner last night.
Just another Newbie...
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi,
Welcome to the board. Good for you for being pro-active, and taking the right steps to get your life back.
To answer your questions, a few of us react within 10 or 15 minutes of beginning a meal, (probably due to mast cell issues, connected with MC), but most of us react somewhere in about a 3 to 6 hour time frame. Some react about 12 to 24 hours later, and as your husband says, some take as long as 2 or 3 days to react. A few of us begin to react in about the 20 to 30 minute time frame, and those individuals probably have gastric, (stomach), involvement, but it could also be a result of rapid transit connected with small intestinal involvement. MC can affect any part of the GI tract from mouth to anus, and it can also affect all parts of the GI tract, for some of us. Small intestinal involvement is very common, (in fact, research shows that most of us probably have small intestinal involvement, though most GI docs are unaware of that fact), and it's possible for the stomach to begin passing chyme from a meal into the duodenum, within 20 to 30 minutes after beginning a meal. For example, I have a typical celiac reaction to oats - it begins to clean me out in about 3 hours after eating.
Probably at least 95% of us are sensitive to casein, (the primary protein in all dairy products, if we are sensitive to gluten, and roughly half of us are also sensitive to soy. Other food sensitivities are somewhat common, also, but they affect a smaller percentage of us. Everyone with enteritis, (intestinal inflammation), will be lactose-intolerant, until the inflammation subsides, and then the ability to produce normal amounts of lactase enzyme will return. However, casein sensitivity is usually permanent, once it is triggered.
Being married to a chef can be a big help with this disease, since he is probably well aware of how to look for various ingredients that are derived from the various foods that affect us, and he's probably aware of the risks of cross-contamination, which can be a big stumbling block for so many of us.
Since you mention salad dressing, please be aware that in addition to ingredient risks with most salad dressings, virtually all of us have to minimize fiber until our intestines have had sufficient time to heal. We're not sensitive to fiber, (as in autoimmune-type sensitivities), but fiber is very abrasive to our hyper-sensitive intestines, while they are inflamed. We have to mostly avoid fruits, (not only because of the fiber, but also because of the fructose), and if you eat any vegetables, (or fruit), they should be peeled, (to minimize the fiber), and over-cooked, (as in cooked to mush), to make them easier to digest. Some of us can tolerate bananas, but citrus fruits especially, are a no-no for all but a few of us. If you simply can't survive without lettuce, use romaine, (never iceberg) - iceberg lettuce is like an industrial-strength laxative for most of us, until we recover. Since spices can also be a problem, if you use a salad dressing, make it mostly olive oil, and be very careful about any other ingredients.
For some people, Entocort can mask the symptoms of the disease, to make it difficult, (or impossible), to detect any food sensitivities, but as soon as the drug is discontinued, the symptoms will return. At only 6 mg per day, though, you will probably be able to notice most food reactions, which will allow you to fine-tune your diet, before your gastroenterologist insists that you should stop using the Entocort.
Also, please be aware that until we get all the gluten antibodies out of our system, (which can take quite a while), we may react at times, for what seems to be no good reason at all.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the board. Good for you for being pro-active, and taking the right steps to get your life back.
To answer your questions, a few of us react within 10 or 15 minutes of beginning a meal, (probably due to mast cell issues, connected with MC), but most of us react somewhere in about a 3 to 6 hour time frame. Some react about 12 to 24 hours later, and as your husband says, some take as long as 2 or 3 days to react. A few of us begin to react in about the 20 to 30 minute time frame, and those individuals probably have gastric, (stomach), involvement, but it could also be a result of rapid transit connected with small intestinal involvement. MC can affect any part of the GI tract from mouth to anus, and it can also affect all parts of the GI tract, for some of us. Small intestinal involvement is very common, (in fact, research shows that most of us probably have small intestinal involvement, though most GI docs are unaware of that fact), and it's possible for the stomach to begin passing chyme from a meal into the duodenum, within 20 to 30 minutes after beginning a meal. For example, I have a typical celiac reaction to oats - it begins to clean me out in about 3 hours after eating.
Probably at least 95% of us are sensitive to casein, (the primary protein in all dairy products, if we are sensitive to gluten, and roughly half of us are also sensitive to soy. Other food sensitivities are somewhat common, also, but they affect a smaller percentage of us. Everyone with enteritis, (intestinal inflammation), will be lactose-intolerant, until the inflammation subsides, and then the ability to produce normal amounts of lactase enzyme will return. However, casein sensitivity is usually permanent, once it is triggered.
Being married to a chef can be a big help with this disease, since he is probably well aware of how to look for various ingredients that are derived from the various foods that affect us, and he's probably aware of the risks of cross-contamination, which can be a big stumbling block for so many of us.
Since you mention salad dressing, please be aware that in addition to ingredient risks with most salad dressings, virtually all of us have to minimize fiber until our intestines have had sufficient time to heal. We're not sensitive to fiber, (as in autoimmune-type sensitivities), but fiber is very abrasive to our hyper-sensitive intestines, while they are inflamed. We have to mostly avoid fruits, (not only because of the fiber, but also because of the fructose), and if you eat any vegetables, (or fruit), they should be peeled, (to minimize the fiber), and over-cooked, (as in cooked to mush), to make them easier to digest. Some of us can tolerate bananas, but citrus fruits especially, are a no-no for all but a few of us. If you simply can't survive without lettuce, use romaine, (never iceberg) - iceberg lettuce is like an industrial-strength laxative for most of us, until we recover. Since spices can also be a problem, if you use a salad dressing, make it mostly olive oil, and be very careful about any other ingredients.
For some people, Entocort can mask the symptoms of the disease, to make it difficult, (or impossible), to detect any food sensitivities, but as soon as the drug is discontinued, the symptoms will return. At only 6 mg per day, though, you will probably be able to notice most food reactions, which will allow you to fine-tune your diet, before your gastroenterologist insists that you should stop using the Entocort.
Also, please be aware that until we get all the gluten antibodies out of our system, (which can take quite a while), we may react at times, for what seems to be no good reason at all.
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.
Tex- Thank you SO MUCH for the amazing and thorough information.
I'm still having reactions to what seems to be quite a few things- but with the casein information, I think that may be a big clue!
I am sure it will take awhile to fine tune everything, but I think being aware and educated is a huge help.
I have what may seem like an odd question.
Do people ever get the "Intense Itchies" with MC? I have noticed since I started having symptoms in January, that I go through progressive bouts of being itchy. The areas are never consistent, and it's like an intense-under the skin- itch that nothing seems to help.
I scratched my hand in two places while sleeping the other night, that I woke up bloody.
Yesterday, while having a conversation, I noticed and itch and started to scratch. Now my entire left forearm is a swollen, ripped up mess :(
Oh- the joys of being the lucky ones!
I'm still having reactions to what seems to be quite a few things- but with the casein information, I think that may be a big clue!
I am sure it will take awhile to fine tune everything, but I think being aware and educated is a huge help.
I have what may seem like an odd question.
Do people ever get the "Intense Itchies" with MC? I have noticed since I started having symptoms in January, that I go through progressive bouts of being itchy. The areas are never consistent, and it's like an intense-under the skin- itch that nothing seems to help.
I scratched my hand in two places while sleeping the other night, that I woke up bloody.
Yesterday, while having a conversation, I noticed and itch and started to scratch. Now my entire left forearm is a swollen, ripped up mess :(
Oh- the joys of being the lucky ones!
That's not an odd question at all, (though it would probably cause your GI doc to wave it off as irrelevant).CNewman wrote:I have what may seem like an odd question.
Do people ever get the "Intense Itchies" with MC? I have noticed since I started having symptoms in January, that I go through progressive bouts of being itchy. The areas are never consistent, and it's like an intense-under the skin- itch that nothing seems to help.
I scratched my hand in two places while sleeping the other night, that I woke up bloody.
Yesterday, while having a conversation, I noticed and itch and started to scratch. Now my entire left forearm is a swollen, ripped up mess :(
Oh- the joys of being the lucky ones!
For many years, allergists thought that mast cells located in the skin, and upper respiratory tract, were the only ones that caused allergic reactions. (And most allergists still don't know any better, unfortuantely). Actually, though, the intestines contain vast numbers of mast cells. Research during the most recent few years, has shown that as many as 70% of us, (anyone with an IBD, or celiac disease), have what has been named "mastocytic enterocolitis", (ME). It is diagnosed by an elevated mast cell count, in biopsy samples from the colon. Only a handful of gastroenterologists are familiar with it, and most pathologists never check for it, (unless the GI doc orders it - but since they're unfamiliar with it, they don't order it). A special tryptase-based stain is used to prepare the slides, before they're examined under the microscope, and most path labs don't even stock the stain, so they have to order it, in order to make a mast cell count. Your existing slides from your most recent colonoscopy can be restained, and reexamined for mast cells, if you want to pursue a diagnosis of ME. Your GI doc would need to place the order to do this. Don't expect him or her to know how to treat the condition, however, so from a medical viewpoint, a diagnosis is somewhat irrelevant, at the moment, unfortunately.
But we don't even have to have ME, in order to have mast cell problems, such as you describe. Many people have what is known as mast cell activation syndrome, (MCAS), also known as mast cell activation disorder, (MCAD). People with this condition have normal numbers of mast cells, but they are overly-sensitive, and they degranulate when they shouldn't. When mast cells degranulate, they release histamines, and other inflammatory modulators, (such as cytokenes, leukotrenes, etc.). The histamine is what causes itching, swelling, sometimes a rash, etc.
With MC, the symptoms are caused by eating foods that either contain a high level of histamines, (such as dried, aged, or fermented products), or foods that promote the degranulation of mast cells, (such as alcohol, bananas, chocolate, eggs, etc.). Here are a couple of lists of such foods that people with this condition have to avoid, in order to prevent symptoms:
http://www.michiganallergy.com/food_and_histamine.shtml
http://www.urticaria.thunderworksinc.co ... foodsource
Many of us are able to get relief by avoiding those foods, and/or taking either an H1 or an H2 type antihistamine, which will tie up the histamine receptors, and prevent the histamine from completing the reaction. Others have been helped by taking Histame. Normally, diamine oxidase, (an enzyme normally present in our blood), deactivates excess histamine in circulation, and prevents a build up. It appears that for some of us, MC causes a deficiency of diamine oxidase, (DAO), so we tend to accumulate histamine, until it becomes a problem. Histame can act as a supplemental replacement for DAO, so for those with a DAO deficiency, histame can be beneficial for such problems as you describe.
MC is a very complex disease, with far-reaching consequences, because it appears that when the genes that predispose to MC are triggered, genes that predispose to food sensitivities, and other issues, (such as mast cell disorders), are also triggered.
You're most welcome.
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.
Rae,
The bags under your eyes may be due to your eyes watering excessively, caused by mast cell activation. I have that problem sometimes during hay fever reactions, unless I take an antihistamine. For some of us, instead of flowing out of the eyes externally, the fluid accumulates in the skin under the eye.
Please refer to my post right above your post.
Tex
The bags under your eyes may be due to your eyes watering excessively, caused by mast cell activation. I have that problem sometimes during hay fever reactions, unless I take an antihistamine. For some of us, instead of flowing out of the eyes externally, the fluid accumulates in the skin under the eye.
Please refer to my post right above your post.
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.