I have spent far too much time reading far too many forums, but I have never posted anything anywhere before. I’m not sure why I am now, and I’m not even sure I have MC. However, I thought I’d share my story here and see if there is someone that may have a suggestion or insight that may make sense to me.
As a child I had reoccurring blister like skin rashes on my feet and hands. Other than that no major symptoms until about 10yrs ago in my early 20s. I was under a lot of stress when my first ´crises´ happened. My digestive system nearly shut down, I was exhausted and my bowels literally exploded with intense spasms. This was also the only time I had a little blood and mucus in my stools. After the usual circus with mainstream medicine that led no where, the best I came up with at the time was Candida. I did all the diets pills and potions with limited success. After about a year I improved and resumed my usual lifestyle. This pattern repeated itself about 4 times as I went through the rounds with the medical and alternative medicine each time I relapsed.
This last relapse (about a year ago) was one of the reasons I decided to relocate with my Brazilian wife to Brazil. It was here that I met a doctor who is a friend of my wife’s family. He diagnosed me with IBS/colitis and put me on antibiotics and then a sever elimination diet. During the diet I became aware of my issue with gluten, as I had a definite reaction to it. This has been confirmed as each time I have unknowingly ingested some since, I’ve had a violent reaction. I am scheduled for a blood test, but it maybe several weeks before I get results.
Over the 2 months or so I have been GF I noticed definite differences. Minor skin rashes cleared up, I began to feel better, have more energy, and the vicious D/constipation cycle eased and I began to have normal movements. I was still having problems believing that something so simple could be causing so much suffering for me for so long, but I began feeling hopeful that I might be able to have a ´´normal´ life. I’m sure that hope is part of why this last relapse I’m having now seems so much harder. The only trigger I can think of is some bad sushi that my wife and I ate. She was ok after a few days; I have been struggling since with bloating, D and constipation for 3 weeks now. The past few days have been extremely difficult. I have been very weak, and mentally Im losing it with wild mood swings.
I feel almost embarrassed for sharing this as I know there are people suffering much more. I am also confused as there is so much information out there, and a lot of it contradictory. There does not seem to be any consensus about why this stuff happens or what to do about it. I feel like I’ve seen every doctor and taken every potion, and now when it seemed like I found something that worked to get even worse again has been hard to deal with. I’m trying to move on, I just found enterolab and I’m thinking about ordering the tests (seems like I can from Brazil) and also this place http://www.ibstreatmentcenter.com although I have not seen it mentioned on this site. I’m not sure if I let them stick some tubes in me how to ask if they will test for MC or if it even matters to do this.
I’m also just about tapped out and have no means right now to make any money so I really have only one last shot at some type of treatment.
Im losing it
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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IDontGiveA
- Little Blue Penguin
- Posts: 25
- Joined: Mon Feb 15, 2010 9:41 am
- Location: Brazil
Dear IDGA
You've been through a lot and I guess, having read the posts here, you know that this is not a BS place. From what you have indicated you are gluten intolerant, but perhaps also intolerant to other foods. If you can, I would suggest you take the Enterolab tests. It will answer a lot of questions. Thanks also for posting the url, it looks interesting. I am sure others will be along soon...
Ant
You've been through a lot and I guess, having read the posts here, you know that this is not a BS place. From what you have indicated you are gluten intolerant, but perhaps also intolerant to other foods. If you can, I would suggest you take the Enterolab tests. It will answer a lot of questions. Thanks also for posting the url, it looks interesting. I am sure others will be along soon...
Ant
I'd certainly say you've "suffered" enough to qualify for posting. 
.......... I'm just sorry you've needed to read any forums at all but hopefully this one will at least offer you some hope and real support. It has for many.
We all have somewhat different reactions to MC, and as you said, you may not even have MC but it sure sounds similar.
Some have gotten a handle on with diet, others with meds and some are still figuring out what works for them. I know you are sick and tired of reading but my best suggestion is to continue reading here and try what sounds resonable to you. Ask questions..... we have a couple of great researchers here if the answer isn't known. No subject is too gross either.
Shirley
.......... I'm just sorry you've needed to read any forums at all but hopefully this one will at least offer you some hope and real support. It has for many.We all have somewhat different reactions to MC, and as you said, you may not even have MC but it sure sounds similar.
Some have gotten a handle on with diet, others with meds and some are still figuring out what works for them. I know you are sick and tired of reading but my best suggestion is to continue reading here and try what sounds resonable to you. Ask questions..... we have a couple of great researchers here if the answer isn't known. No subject is too gross either.
Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill
Welcome here. You are not the first one that has gone a long way, before finding out what really the problem is. Gluten causes so much more bowel and other health problems than just Celiac disease or dermatitis herpetiformis (HD), only this is not yet recognized by main stream medicine. Even if you are not diagnosed with MC, there is a lot of information to find here.
If you want to be sure that you are intolerant to gluten, the enterolab would be a suitable option. The positive thing is you don't need to start eat gluten again, like is necessary with the blood test and small bowel biopt. The enterolab website also has a lot of useful information on gluten sensitivity.
If you don't live in the US, ordering a test is possible. Ant did it from Hongkong and I did it from the Netherlands.
Again welcome and I hope this place will help to find an answer for your bowel problems.
If you want to be sure that you are intolerant to gluten, the enterolab would be a suitable option. The positive thing is you don't need to start eat gluten again, like is necessary with the blood test and small bowel biopt. The enterolab website also has a lot of useful information on gluten sensitivity.
If you don't live in the US, ordering a test is possible. Ant did it from Hongkong and I did it from the Netherlands.
Again welcome and I hope this place will help to find an answer for your bowel problems.
Welcome to the Forum! The only thing I would add to the good advice already posted, is that your time frame of going gluten free for a few months and then having a recurrence of symptoms is very characteristic of having several intolerances. You can look at it like a set of nesting Russian dolls. You eliminate the biggest intolerance, usually gluten, and that unmasks the next biggest intolerance for your body to now react to. For some people there are only 1 or 2 rounds, but others can have more. That's why testing at Enterolabs is so helpful if you have multiple intolerances. You can eliminate them all at once instead of going through several frustrating cycles of doing better, relapsing, and then trying to figure out by elimination what your next intolerance is.
Using me as an example, dairy protein was the first major intolerance for me, and the one I eliminated first. I just thought at the time that I was lactose intolerant. That worked for several years, and then I relapsed and had such bad D that I was feeling pretty house-bound. I had a colonoscopy at that point last June, and was diagnosed with LC. I found the forum, and decided to go gluten free and also get tested by Enterolab. The testing confirmed that I was gluten intolerant, and also had intolerances for soy and yeast, but OK for eggs. So I just eliminated them and avoided the uncertainty of wondering what would be causing future relapses. So if you can afford it, I would join with the others in recommending the food panels testing at Enterolab. Then you'll know for sure. Not that we don't get frustrated sometimes, as our guts need time to heal and in the meantime we can have problems with things like high fiber foods, acidic foods, etc, that are different for each of us. And some unfortunate people are intolerant to other foods not currently being tested for by Enterolab, like corn or nightshades.
I've had pretty good success with diet alone. I've been GF, DF and SF for about 5 months, no drugs, and am pretty much symptom free. However, I can tell that I still have some healing to do, and don't stress my gut with spicy foods or too much fiber. And I know that it's a life-long change. Others need the help of drugs such as Entocort, along with diet to heal. We are all different, and there is tremendous respect for the various ways we have approached our healing process.
Rosie
Using me as an example, dairy protein was the first major intolerance for me, and the one I eliminated first. I just thought at the time that I was lactose intolerant. That worked for several years, and then I relapsed and had such bad D that I was feeling pretty house-bound. I had a colonoscopy at that point last June, and was diagnosed with LC. I found the forum, and decided to go gluten free and also get tested by Enterolab. The testing confirmed that I was gluten intolerant, and also had intolerances for soy and yeast, but OK for eggs. So I just eliminated them and avoided the uncertainty of wondering what would be causing future relapses. So if you can afford it, I would join with the others in recommending the food panels testing at Enterolab. Then you'll know for sure. Not that we don't get frustrated sometimes, as our guts need time to heal and in the meantime we can have problems with things like high fiber foods, acidic foods, etc, that are different for each of us. And some unfortunate people are intolerant to other foods not currently being tested for by Enterolab, like corn or nightshades.
I've had pretty good success with diet alone. I've been GF, DF and SF for about 5 months, no drugs, and am pretty much symptom free. However, I can tell that I still have some healing to do, and don't stress my gut with spicy foods or too much fiber. And I know that it's a life-long change. Others need the help of drugs such as Entocort, along with diet to heal. We are all different, and there is tremendous respect for the various ways we have approached our healing process.
Rosie
Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time………Thomas Edison
Hi and welcome aboard,
Sorry to hear of all your health problems. Obviously, your description of the early "rash", closely matches dermatitis herpetiformis, and your other clinical symptoms are certainly consistent with celiac disease. It's difficult to tell whether your current flare is simply due to persistent enteritis caused by "bad" sushi, or if something else is going on. It's possible for serious intestinal trauma of that sort to trigger MC, if the right genes are present. There are many other possibilities, also, of course.
If the blood test you mentioned, is to screen for celiac disease, and you've been avoiding all gluten for several months, then the results will almost certainly be negative, regardless of whether or not you actually have gluten sensitive enteropathy, due to the fact those blood tests have rather limited sensitivity. Stool tests, (at Enterolab), are capable of accurately detecting gluten sensitivity up to a year or more after gluten has been withdrawn from the diet.
For all I know, the IBS treatment facility that you referenced, may offer practical treatment options, and they may have many satisfied customers/clients, but I'm always more than a little uneasy about dealing with medical treatment facilities that offer for sale, everything that a patient might need, right there on site. Enterolab, for example, only sells lab tests - they don't try to nickle and dime a customer to death.
The only way that MC can be diagnosed, is by having a pathologist examine under a microscope, biopsy samples taken from the colon, during a colonoscopy. A simple Enerolab stool test, can determine with virtually 100% reliability, whether you are gluten-sensitive. While they cannot diagnose MC by means of an Enterolab test, they do have a test to determine whether you are having an autoimmune reaction, which is typical of the presence of an inflammatory bowel disease, (an anti-tissuetransglutaminase antibody test, I believe).
If you are sensitive to gluten, and/or any other foods, and your gut is still healing from the damage caused by food intolerances, then any other additional form of enteritis, (such as food poisoning), can take much longer to resolve, than it would for someone with a normal digestive system, so that could be why you are having such a tough time getting over the sushi incident.
Good luck, whatever you decide to do, and please feel free to ask any questions that come to mind.
Tex
Sorry to hear of all your health problems. Obviously, your description of the early "rash", closely matches dermatitis herpetiformis, and your other clinical symptoms are certainly consistent with celiac disease. It's difficult to tell whether your current flare is simply due to persistent enteritis caused by "bad" sushi, or if something else is going on. It's possible for serious intestinal trauma of that sort to trigger MC, if the right genes are present. There are many other possibilities, also, of course.
If the blood test you mentioned, is to screen for celiac disease, and you've been avoiding all gluten for several months, then the results will almost certainly be negative, regardless of whether or not you actually have gluten sensitive enteropathy, due to the fact those blood tests have rather limited sensitivity. Stool tests, (at Enterolab), are capable of accurately detecting gluten sensitivity up to a year or more after gluten has been withdrawn from the diet.
For all I know, the IBS treatment facility that you referenced, may offer practical treatment options, and they may have many satisfied customers/clients, but I'm always more than a little uneasy about dealing with medical treatment facilities that offer for sale, everything that a patient might need, right there on site. Enterolab, for example, only sells lab tests - they don't try to nickle and dime a customer to death.
The only way that MC can be diagnosed, is by having a pathologist examine under a microscope, biopsy samples taken from the colon, during a colonoscopy. A simple Enerolab stool test, can determine with virtually 100% reliability, whether you are gluten-sensitive. While they cannot diagnose MC by means of an Enterolab test, they do have a test to determine whether you are having an autoimmune reaction, which is typical of the presence of an inflammatory bowel disease, (an anti-tissuetransglutaminase antibody test, I believe).
If you are sensitive to gluten, and/or any other foods, and your gut is still healing from the damage caused by food intolerances, then any other additional form of enteritis, (such as food poisoning), can take much longer to resolve, than it would for someone with a normal digestive system, so that could be why you are having such a tough time getting over the sushi incident.
Good luck, whatever you decide to do, and please feel free to ask any questions that come to mind.
Tex
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Welcome to the group - and good for you for putting the post up. It is not whether people are suffering more or less, everyone has the right to feel good enough to face the day and not self concious about the niggling symptoms.
prior to my MC diagnosis in late 2009, I had been diagnosed with IBS, as a consequence of some bowel surgeries.
During this time i minimised wheat and gluten, lactose and yeast. i was able to tolerate meals with these ingredients but would pay the price via constipation/cramping/gas/diarrhea.
I used to get swelling and aching of my joints and the mild ezchma that appeared here and there, since giving up gluten 100% this has stopped.
your body is not happy with some of ingredients you are consuming....The Enterlab test is the quickest and easiest way to assess what these ingredients are ( Plus there is the knowledgeable people on this forum to help you understand what the results mean)
the adjustment to a new diet takes energy and time but to elminate the niggling symptoms and feel good is worth it
good luck...... and be assured there is no such thing as a silly or embarrassing question in this forum..
prior to my MC diagnosis in late 2009, I had been diagnosed with IBS, as a consequence of some bowel surgeries.
During this time i minimised wheat and gluten, lactose and yeast. i was able to tolerate meals with these ingredients but would pay the price via constipation/cramping/gas/diarrhea.
I used to get swelling and aching of my joints and the mild ezchma that appeared here and there, since giving up gluten 100% this has stopped.
your body is not happy with some of ingredients you are consuming....The Enterlab test is the quickest and easiest way to assess what these ingredients are ( Plus there is the knowledgeable people on this forum to help you understand what the results mean)
the adjustment to a new diet takes energy and time but to elminate the niggling symptoms and feel good is worth it
good luck...... and be assured there is no such thing as a silly or embarrassing question in this forum..
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Hi and Welcome,
I actually live in Seattle area and have been to the IBS treatment center and met with Dr. Wangen. I completely agree with Tex. I was tested negative to gluten sensitivity by way of a blood test and went on to do the enterolab stool tests where I tested positive to gluten sensitivity. I am definitely sensitive to it and feel better not eating it.
I have also had multiple stool tests through medical doctors and naturopaths. They all came back negative for parasites. What they all fail to tell you is that these tests are highly inaccurate. I finally did a stool test through Metametrix which uses DNA technology to do a microbial ecology profile. It found that I had two parasites and I took the appropriate medication to get rid of them. There was absolutely no sign that I had them before and I am an avid toilet bowl examiner. After beginning the medication my stools were studded with hundreds of eggs. I was amazed that other tests had missed this as it was a very large infestation. I believe that although he wasn't using this test at the time, that Dr. Wangen now does. You can get info about the test if you are interested at
www.metametrix.com.
The test runs $209. last time I checked. Good luck in your search for what is ailing you. It is so frustrating when it is a mystery. This is a great site with many caring people to help you figure out your issues with food, MC or unraveling a mystery.
I agree with Tex in that yours and our digestive systems are our achilles heel. When you get food poisoning you can count on a much longer recovery period.
Love,
Cristi
I actually live in Seattle area and have been to the IBS treatment center and met with Dr. Wangen. I completely agree with Tex. I was tested negative to gluten sensitivity by way of a blood test and went on to do the enterolab stool tests where I tested positive to gluten sensitivity. I am definitely sensitive to it and feel better not eating it.
I have also had multiple stool tests through medical doctors and naturopaths. They all came back negative for parasites. What they all fail to tell you is that these tests are highly inaccurate. I finally did a stool test through Metametrix which uses DNA technology to do a microbial ecology profile. It found that I had two parasites and I took the appropriate medication to get rid of them. There was absolutely no sign that I had them before and I am an avid toilet bowl examiner. After beginning the medication my stools were studded with hundreds of eggs. I was amazed that other tests had missed this as it was a very large infestation. I believe that although he wasn't using this test at the time, that Dr. Wangen now does. You can get info about the test if you are interested at
www.metametrix.com.
The test runs $209. last time I checked. Good luck in your search for what is ailing you. It is so frustrating when it is a mystery. This is a great site with many caring people to help you figure out your issues with food, MC or unraveling a mystery.
I agree with Tex in that yours and our digestive systems are our achilles heel. When you get food poisoning you can count on a much longer recovery period.
Love,
Cristi
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barbaranoela
- Emperor Penguin
- Posts: 5394
- Joined: Wed May 25, 2005 6:11 pm
- Location: New York
Greetings IDGA----well I wont fill that in----
I just wanted to tell U NOT to be embarrassed with anything U want to add!!!
We have said it all--heard it all and it goes with every aspect of this disease~~~
I couldnt add any more than has been posted to U-----just want to say----dont give up/into this disease--
It takes time but with patience U will have RESULTS!!!
As we are all different--we all react differently to medications---
Barbara
I just wanted to tell U NOT to be embarrassed with anything U want to add!!!
We have said it all--heard it all and it goes with every aspect of this disease~~~
I couldnt add any more than has been posted to U-----just want to say----dont give up/into this disease--
It takes time but with patience U will have RESULTS!!!
As we are all different--we all react differently to medications---
Barbara
the fruit of the spirit is love, joy, peace, patience, kindness, goodness, faithfulness and self-control
Welcome to our crazy, loving family! Pull up a chair and make yourself at home!
We have all had that "I am about to give up" feeling and I can tell you that this is the place to (as the song goes) ......"pick yourself up dust yourself off and start all over again......................" Tee hee hee
Seriously, you have been given some good advice here and I would suggest, based upon multiple people here on this board that you have yourself tested at Enterolab. As Tex says, they only sell lab tests. It is very possible that you have allergies/intolerances to more than just gluten. Finding out what those are would be a good start to your journey towards wellness.
Hang in there........it DOES get better!!! Don't be afraid to post or too shy to ask questions. It probably won't be the first time we've heard it or experienced it ourself!
Again, welcome!
Mars
We have all had that "I am about to give up" feeling and I can tell you that this is the place to (as the song goes) ......"pick yourself up dust yourself off and start all over again......................" Tee hee hee
Seriously, you have been given some good advice here and I would suggest, based upon multiple people here on this board that you have yourself tested at Enterolab. As Tex says, they only sell lab tests. It is very possible that you have allergies/intolerances to more than just gluten. Finding out what those are would be a good start to your journey towards wellness.
Hang in there........it DOES get better!!! Don't be afraid to post or too shy to ask questions. It probably won't be the first time we've heard it or experienced it ourself!
Again, welcome!
Mars
"Let us rise up and be thankful, for if we didn't learn a lot today, at least we learned a little, and if we didn't learn a little, at least we didn't get sick, and if we got sick, at least we didn't die; so, let us all be thankful." -- Buddha
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IDontGiveA
- Little Blue Penguin
- Posts: 25
- Joined: Mon Feb 15, 2010 9:41 am
- Location: Brazil
Thank you all for you words and concern. It does help to hear from other people, and I must say I’m impressed with the quality of responses on this forum. I am feeling much better ( IDGA.. yet, still constipated) and I still cant believe how much a flare up effects me mentally/emotionally and how it will just stop as sudden as it came.
Again, any help unraveling this ´mystory´ is greatly appreciated. The games afoot!
@rosie I like your russian doll analogy, and it is something I have not thought of. Nothing else changed in my diet, so I did not think of another potential reaction to other foods. Back in the day I was muscle tested (not sure if I buy it) by a chiropractor who told me I had issues with wheat,corn,potato,banana, and maybe something else I don’t remember. Just to be safe I usually avoid most of those foods especially when I’m not feeling well. This can be hard when you live next to a banana plantation though.
@tex Ive read some of your resent posts, and you have definitely inspired me to keep plugging along. I agree with your take on the .ibstreatmentcenter.com. What interested me the most about them was all the different testing they offered. I think getting the proper tests is the most important thing for me right now, and from what I’ve read enterolab is the way I’m leaning. I would like to get other tests that they don’t offer such as adrenal/mineral/nutritional. I’m not sure exactly what the test is the doctor here wants me to take. I have not taken it yet, all I know is that its blood and we were told that it did not matter if I was eating gluten still. I read about this somewhere else, Im not sure if it’s the difference between IgE and IgG testing or something else. My original assumption was as you mentioned that I was having a hard time with some food poisoning due to the condition of my bowel. I understand this causing the constipation, but I did not think it would trigger another flare up as I was doing so well before. My best guess however is still that the food poisoning was the trigger. If I understand correctly, gluten is not the problem, it is the bodies’ immune response to the gluten, and other things can trigger this response especially if your digestive system is still weak.
@cludwig Thanks for your insight into the IBS center. I recently had a stool test for parasites which came up negative. The doctor here told me my issues were either from parasites, bacteria or food allergies. So he gave me the test and put me on an antibiotic (metronidazol) to kill anything just incase (it felt like the drugs almost killed me though). I am very interested in the company you mentioned - metametrix as they have a presence here in Brazil. They do not post prices on their website however and state you need a doctor to order the tests which leads me to believe they are very expensive. They also have a gluten test, I wonder how it compares to enterolab. They are also attending an orthomolecular medicine conference here in Brazil and seem to be along the same lines if not the same stuff. OM is very popular here, I don’t know much about it other than mainstream medicine is said to look down on it….
This turned out to be a lot longer post than I thought it would be, thanks again for reading……
[/GVideo]
Again, any help unraveling this ´mystory´ is greatly appreciated. The games afoot!
@rosie I like your russian doll analogy, and it is something I have not thought of. Nothing else changed in my diet, so I did not think of another potential reaction to other foods. Back in the day I was muscle tested (not sure if I buy it) by a chiropractor who told me I had issues with wheat,corn,potato,banana, and maybe something else I don’t remember. Just to be safe I usually avoid most of those foods especially when I’m not feeling well. This can be hard when you live next to a banana plantation though.
@tex Ive read some of your resent posts, and you have definitely inspired me to keep plugging along. I agree with your take on the .ibstreatmentcenter.com. What interested me the most about them was all the different testing they offered. I think getting the proper tests is the most important thing for me right now, and from what I’ve read enterolab is the way I’m leaning. I would like to get other tests that they don’t offer such as adrenal/mineral/nutritional. I’m not sure exactly what the test is the doctor here wants me to take. I have not taken it yet, all I know is that its blood and we were told that it did not matter if I was eating gluten still. I read about this somewhere else, Im not sure if it’s the difference between IgE and IgG testing or something else. My original assumption was as you mentioned that I was having a hard time with some food poisoning due to the condition of my bowel. I understand this causing the constipation, but I did not think it would trigger another flare up as I was doing so well before. My best guess however is still that the food poisoning was the trigger. If I understand correctly, gluten is not the problem, it is the bodies’ immune response to the gluten, and other things can trigger this response especially if your digestive system is still weak.
@cludwig Thanks for your insight into the IBS center. I recently had a stool test for parasites which came up negative. The doctor here told me my issues were either from parasites, bacteria or food allergies. So he gave me the test and put me on an antibiotic (metronidazol) to kill anything just incase (it felt like the drugs almost killed me though). I am very interested in the company you mentioned - metametrix as they have a presence here in Brazil. They do not post prices on their website however and state you need a doctor to order the tests which leads me to believe they are very expensive. They also have a gluten test, I wonder how it compares to enterolab. They are also attending an orthomolecular medicine conference here in Brazil and seem to be along the same lines if not the same stuff. OM is very popular here, I don’t know much about it other than mainstream medicine is said to look down on it….
This turned out to be a lot longer post than I thought it would be, thanks again for reading……
[/GVideo]
You're correct. Gluten shouldn't trigger a response by the human immune system. For "normal" people it simply passes through the digestive system, as undigested peptides, and doesn't cause an problems. For those of us who are gluten-sensitive, however, our immune systems recognize gluten, (certain gliadins and glutenins that are components of the amino acid chain that defines gluten, actually), as a "foreign" invader, and it sets out to destroy these peptides, doing immense collateral damage to the mucosa of our intestines, in the process. Actually, rather than being weak, most of us have over-active immune systems. That's why the corticosteroids, and other immune system suppressants, such as the anti-TNF drugs, are effective in helping to control the inflammation caused by MC.IDontGiveA wrote:If I understand correctly, gluten is not the problem, it is the bodies’ immune response to the gluten, and other things can trigger this response especially if your digestive system is still weak.
MC can be initially triggered by many means: any form of enteritis, (whether caused by parasites, SIBO, influenza, mechanical trauma, such as surgery, etc.), many medications, (including, but not limited to, NSAIDs, SSRIs, PPIs, etc.), food intolerances, the leaky gut syndrome, untreated celiac disease, and a few that don't come to mind at the moment. Even events such as the cessation of a long-term smoking habit can trigger MC, and we have many examples of each of these possibilities among the members of this board, though some members are unsure how they originally developed the disease.
All of us with this disease have certain genes that predispose us to the disease, and once the genes are triggered, in many/most cases, certain other genes that predispose to food sensitivities are also triggered, gluten being the main one, followed by casein, soya, etc. Once these genes for food sensitivities are triggered, the result is almost always permanent, (unless some other event down the road alters these genes, again). That means that once we become gluten-sensitive, then we will always be gluten-sensitive, and gluten will always trigger an autoimmune reaction resulting in an MC flare, if we ingest it.
When we are in a flare, many other foods irritate our gut, and prolong the reaction, (such as sources of fiber, primarily). We are not technically "intolerant" of these foods, (that is, they do no trigger an autoimmune reaction), but they tend to irritate our gut, which is already hypersensitive, due to the inflammation caused by MC, thus if we eat these "irritants", before our gut has fully healed, they will tend to keep the reaction going, almost as if we were eating one of our intolerances. The difference is, once our gut heals, and we are in true remission, then we are usually able to eat those "irritants" without any ill effects, whereas if we eat an intolerance, we will experience a flare.
Even strictly following a diet that avoids all our food, (and drug), intolerances, it can take a year or more for the gut to completely heal from the damage caused by the inflammation of MC, so during that period of time, we are very vulnerable to relapses. IOW, MC is a complex, and very debilitating disease that can come on quickly, or over a period of time, but once it presents, achieving remission takes time and dedication, except for those lucky few who happen to be fortunate enough to experience spontaneous remission. Unfortunately, only a very small percentage experience spontaneous remission, for the most part.
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.