A couple of questions

[no-more-muffins]

I have been browsing around on the forum and I have a couple of questions:

Can intolerances changes as the gut heals? Is it possible to be intolerant to something now and then be able to eat it later?

What are the symptoms that Entocort is supposed to help? Just D or other GI problems?

Is it common to have backcaches with MC?

How many of you MC sufferers have celiac, and how many of you have family members with celiac or MC or NCGS?

At what age were you diagnosed and how long did you have symptoms before you were diagnosed?

Sorry, lots of questions, but I am just curious.

Thanks everyone.

[tex]

Those are some very good questions - you obviously have a knack for getting right to the "meat" of the matter.

Can intolerances changes as the gut heals? Is it possible to be intolerant to something now and then be able to eat it later?

Yes and no. For a true intolerance to change, I believe that one or more genes have to be changed, and once they are triggered, they usually do not change back. Be aware that many things referred to as intolerances, are actually not. Lactose intolerance, for example, a term commonly used by the medical "experts", is incorrect. "Lactose intolerance" is simply the inability to properly digest lactose in the small intestine, due to a deficiency of lactase enzyme. As a result, the "undigested" lactose, passes into the colon, where it is "digested" by bacteria, resulting in gas, bloating, and D. Lactose is a sugar. I believe that all true intolerances involve proteins. IOW, technically, you can't be intolerant to a sugar. Sugar cannot trigger an autoimmune reaction - proteins can, (and do, of course, for those of us who are intolerant of them). The proteins that we are intolerant of, typically contain amino acid chains, (peptides), that are very similar to certain peptides found in the gliadins, and glutenins, (of which gluten is comprised), that trigger an autoimmune reaction for anyone who is gluten sensitive. IOW, our immune system apparently becomes confused by the similarity, and mistakenly reacts to these other proteins, even though they do not contain amino acid chains that are identical to the peptides that we react to in gluten.

There are many foods that cause digestive issues for us, while our intestines are hypersensitive, due to the inflammation connected with MC. Most of those foods are not intolerances, though - they are simply "irritants" that tend to prolong our reactions. After our gut heals sufficiently, most of us find that we can slowly add most of those "irritants" back into our diet. Such foods include fiber, most fruits, many vegetables, many/most sugars, artificial sweeteners, sugar alcohols, some herbs and seasonings, preservatives, MSG, various food additives, etc.

I have never taken budesonide, but I gather that it not only helps to suppress the inflammation, and thereby control the D, (for many of us), but it also helps with various other symptoms. Remember, the corticosteroids are prescribed to reduce pain, and suppress various other issues, also, such as rashes, and other problems that affect both internal and external epithelia, (skin) - almost anything associated with inflammation. According to Dr. Fine, however, it will not completely control the intestinal inflammation due to MC.

Is it common to have backcaches with MC?

Yes, backaches, headaches, migraines, joint pain, (very similar to RA), and various other pain syndromes are often/usually associated with many cases of MC, (though not all). MC is often connected with the Leaky Gut Syndrome, (LGS), and most of these symptoms are a result of the LGS. Some of us even have enough symptoms to qualify for a diagnosis of chronic fatigue syndrome, and even such issues as SLE. Usually, most of those other issues will resolve, once the MC is brought under control. If not controlled, MC often/usually leads to other autoimmune diseases.

How many of you MC sufferers have celiac, and how many of you have family members with celiac or MC or NCGS?

I don't know if anyone has ever compiled any statistics, but there is a significant correlation between MC and CD, and we have a fair number of members with dual diagnoses. Most of us have found that our family members are not interested in even looking into the possibility that they might have gluten issues. That will surely change in the future, if the medical community ever gets it's act together, but right now, we are pioneers, as far as the spectrum of gluten sensitivity is concerned, and most people just prefer to ignore the prospects, as long as they are not "chained" to the bathroom. You will see what I'm talking about, if you try to convince your own family to be screened for CD or GS. Many of us also have celiac genes:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=2645

At what age were you diagnosed and how long did you have symptoms before you were diagnosed?

In my own case, I was never diagnosed, because my GI doc didn't bother to take biopsies, and after running every test he could think of, with negative results, he told me there was nothing wrong with me, (I suppose the uncontrollable D, and all the other symptoms, were just my imagination). I finally got tired of being sick, and decided to try to figure it out for myself. That was back when MC was really considered to be a rare disease, of course. Back in those days, it didn't make much difference if you had a diagnosis, anyway, because no one knew much about treating it, and it wasn't uncommon for a GI doc to advise a patient to "just learn to live with it".

Questions are good - we all learn from them.

Tex

[no-more-muffins]

Tex, you are truly a pioneer. All you people here. My hat is off to you! Thank you so much for those thorough answers. It really means a lot to have someone mentor me through this. And yeah, I just love that "learn to live with it" line. A GI nurse practicioner handed me a 10 pg. packet about IBS before they finally agreed to to the endoscopy for me. In the packet it basically says to live with it. And that (direct quote: " Unfortunatley, many patients continue to suspect they have an undiscovered disease and pursue repeated consultations from many physicians, which lead to repeated testing and often to one or more abdominal surgeries in hope of obtaining relief from their distress".... My jaw just DROPPED when I read that. OF COURSE WE WANT RELIEF! OF COURSE WE BELIEVE WE HAVE something!!!! Unbelievable. And this is what they were telling me BEFORE they had even done an endoscopy or colonoscopy!

RANT over.

So let's say that while my gut heals milk gives me a problem but I am not technically intolerant to the proteins in it. Does that mean that I will not show up as casein intolerant in the tests offered by enterolab? If something comes back from the lab saying "intolerance" that means actual lifelong intolerance to the proteins right? I really have no idea which foods I may have trouble with at this point. I hate to spend the money testing but I feel that this might actually be the one thing that is worth the money (as opposed to all the dr. visits, ct scan, pelvic u/s, blood work etc. that I have had in the last 6 months.... I am trying to find out if my ins. will pay for the tests at enterolab. )

As far as having members of the family tested, I have already convinced my sister to have her autistic 20 month old tested by enterolab. If she comes back with intolerances I think it might start a chain reaction with my sister's family and then maybe with some of my other brothers and sisters. And of course I'll have to test MY kids and my husband toooo...... :)

[mbeezie]

There is no simple answer to wheteher foods can be reintroduced at some later point in time - it depends on the type of reaction. Many types of immune reactions can occur - they stimulate the release of diferent chemicals (cytokines, leukotrienes etc). In the case of true allergy (IgE reactions), of course those items can never be eaten again. Some intolerances, like gluten, require a lifelong restriction because they cause damage. These proteins stimulate an immune response and are not necessarily dose dependent - meaning just a little bit can cause a big problem. Also, just because you are not overtly showing symptoms, these proteins can cause silent damage. Other substances (the irritants Tex referred to) can be immune stimulating but sometimes are dose dependent, like amines, salicylates, food dyes, preservatives etc. - people who have issues with these food chemicals (there are many types of food chemical reactions) don't readily clear them, so they will be symptomatic until their levels reduce. When the immune system is overstimulated you may react to many things. After a preiod of being asymptomatic, it may be possible to add some foods back on a rotaional basis (like maybe having a certain food chemical in small amounts every 3-4 days) - but not ones that can cause silent damage, just the ones that cause less serious symptoms. But even this is individual - we all have different genetic makeup and different responses, so for most of us it's trial and error.

I was 46 when my symptoms got "activated" - I say it that way because that's the age when they became so obvious I couldn't ignore them. Looking back, I beleive I had some symptoms of food intolerance all of my life.

Mary Beth

[Gloria]

Hi No-more-muffins,

If something comes back from the lab saying "intolerance" that means actual lifelong intolerance to the proteins right?

My Enterolab tests showed intolerances to gluten, soy, eggs, yeast and casien.

I've since determined that all legumes, not just soy, are problematic for me and I don't expect to eat any of them again. I have, however, resumed eating yeast in breads without any problems. I reintroduced yeast about 3 months after my test results, but I'm careful to not eat it more frequently than every 3-4 days. Some here have found that they can eat eggs as an ingredient in baked goods, but not by themselves. Some with a casien intolerance have found that they can eat cheese in very small amounts, such as a sprinkling on top of something.

Testing intolerances is pretty risky and tends to extend the healing process. It's best to wait reintroduce known food irritants until the gut is completely healed, a time period of about 2 years after eliminating intolerances.

Gloria

[tex]

I had a long board meeting, after work, so I'm just now getting around to having the time to respond to this.

Actually, regarding the "pioneer" situation, I'm pretty much a Johnny-come-lately, compared to some of the members here. They already had it figured out years before I found them on another board, about 5 years ago. I had only been in remission about 6 months when I happened to stumble upon the support board that preceded this one, but I was amazed to find so many people who were "just like me". Polly, Maggie, CAMary, Barbara, Katy, Matthew, Shirley, Mars, and many others, who don't post very often any more, were already fine-tuning the treatment process, when I first met them.

The quote you mentioned,

Unfortunatley, many patients continue to suspect they have an undiscovered disease and pursue repeated consultations from many physicians, which lead to repeated testing and often to one or more abdominal surgeries in hope of obtaining relief from their distress

says a lot about the mindset of the medical community, doesn't it. Apparently, for the most part, they really believe, (at least, on an official level), that they have a good understanding of most medical issues, and any patient who questions their "official" position, is simply misguided, confused, or just plain nuts. It appears that they honestly believe, that if they can't find anything wrong with us, well then, by George, we ain't sick, no matter what we think, or what our symptoms might be.

Okay, to get to your questions,

So let's say that while my gut heals milk gives me a problem but I am not technically intolerant to the proteins in it. Does that mean that I will not show up as casein intolerant in the tests offered by enterolab?

If you are lactose intolerant, that will not show up in the Enterolab tests, but if you are casein intolerant, then, of course, it will show up. As Mary Beth mentioned, however, some of these food intolerances are dose dependent. I was never a prompt reactor to casein, the way many of us are. I did not have the casein test from Enterolab, however, by testing myself multiple times, with various dairy products, I determined that I reacted to both lactose and casein, in a dose-dependent fashion. Sure enough, after totally avoiding dairy, (and the other intolerances that I named previously), for a couple of years, I was able to reintroduce dairy into my diet, once my gut was healed. Unfortunately, most of us are not that lucky. Our immune systems are different, and some of us have immune systems that are simply more sensitive, (more corrupt), to certain items.

I read somewhere, (I don't remember where), that empirical evidence indicates that we only test positive to a dietary yeast antibody test, if we actually have a yeast overgrowth, (candida albicans), at the time of the test. I believe that is true, and several members here, who have tested positive to the yeast antibody test, (such as Gloria, for example), have found that they can tolerate dietary yeast, without any problems, at least that seems to be the case when remission is present.

I really have no idea which foods I may have trouble with at this point.

I hear you. I first decided that I must be a celiac, and a little over a month before I adopted the GF diet, I started keeping a food diary, (on the computer), and for over 2 years, I carefully detailed everything I ate, when I ate it, and how I felt, along with a description of my BMs. For the life of me, I could never tell for sure, exactly what I was reacting to. I couldn't even tell a difference when I stopped eating gluten, (of course, once I cut gluten out, I have never knowingly ingested any of it, again, at any time). Sometimes, everything seemed to make me sick. After my gut healed for about a year, though, (from the gluten damage), then I could begin to see certain patterns, but I still could not be sure of what was making me sick, at any particular time. I finally just had to cut out everything that I thought was suspicious, and within a week or two , I was in remission, (a year and a half into the GF diet). If I had been aware of Enterolab, back in those days, I probably could have saved a lot of time and misery.

You have already done much better than I have been able to do, as far as convincing relatives and friends to get tested, is concerned. You would probably do well in a sales career. So far, I haven't been able to convince anyone in my family to either cut out gluten for a while, or get tested.

Tex

[mbeezie]

I think it's common to test our food intolerances, just to make sure it's not all in our heads!

I think an important thing to remember is that we are dealing with an autoimmune disorder that creates an inflammatory response. Diarhhea is just one expression of that response. I had many other symtoms of inflammation outside of my GI tract. For example, I was starting get really knobby looking knuckles and I suspected I was getting osteoarthritis. When I changed my diet I noticed a huge difference in my fingers - they look almost normal now. Other symptoms like headaches, leg and back pain, and peripheral neuropathy also went away.

Once you get one immune disorder you are more prone to others, so IMO it's important to be vigilant about anything that overstimulates the immune system. Reading message boards like this one, (and also the celiac, fibromyalgia, IBS etc. sites) people with autoimmune disorders are really starting to recognize that diet helps to reduce the symtoms - some research is also supporting this. There is a good book out called The Autoimmune Epidemic - I found it fascinating. They talk about diet a bit, but not in enough detail IMO.

I read that you are a young mom with 4 children. Once you sort out your issues I stongly encourage you to do the stool test on your children, because there is a genetic link with gluten intolerance. I tested my son and he was positive for gluten and casein sensitivity (didn't test yet for other stuff but plan to). I now understand why he was "colicky" as a baby - I am certain it was casein intolerance, although doctors blamed it on me and said it was because I was a nervous mother . . .well yes, he did cry constantly and that got on my nerves (it also explains why he is an only child). After I started researching this stuff I realized that he had many symptoms of food intolerance. He had a problem with constipation - so bad in fact that he had 2 bouts of encopresis (impaction with stool leaking out). His pediatrician blamed it on his lack of desire to quit playing video games and take the time to poop. Since he has been GF/CF he has normal stools and still plays lots of video games. He also hovered in the 5-10 %-ile for height. He has on been on the diet since March but he has grown close to an inch, so his growth velocity is improving (I hope it's not just a fluke). And finally, he had tiny bumps on his face (not raging eczema) and these disappeared on the diet. I had the genetic test done and he carried one gene for celiac (from my husband) and one gene from me for gluten intolerance. Because of this gene pattern and the symptoms he already had we chose to put him on a GF/CF diet. My husband also follows the diet - the only thing he noticed was that GF beer doesn't cause bloating like regular beer! My goal for my son is to PREVENT an autoimmune disorder - I never want him to go through what I have been through. He's been a real trooper about the diet and does admit he feels better - and he likes the growth part too.


Leaving tomorrow for Dr. Fine's intestinal health camp - the weather in NM is in the low 80s during the day and in the 50s at night. Sooooo looking forward to getting away from this oppressive Houston heat and humidity!

Mary Beth

[no-more-muffins]

Oooh, Mary Beth have fun at intestine camp! :)

I definitely plan on getting my kids tested. My baby (20 months) is always constipated and I am highly suspicious of her having GS. I even want to get my hubby tested. I am trying to get info about whether it is covered by ins. or not.