how long must gluten be eliminated?

[trialanderror]

I have lymphocytic colitis. I am interested in eliminating gluten from my diet to see if it helps. How long must gluten be eliminated to "know" if a person has an intolerance?

In general, if someone has eliminated gluten for a while, and then eats some gluten, does a person effectively start over, or will their symptoms subside quicker once they eliminate gluten again?

Thanks,

[tex]

Hi,

Most people who adopt the GF diet expect prompt results. Unfortunately, while that is true for many celiacs, most of us are not celiacs, and so it takes significantly longer to overcome the intestinal damage that has been caused by the type of gluten-sensitivity that we have, which is non-celiac gluten-sensitivity, (N-C G-S). A few people can see dramatic improvement within a few days to a week or so, but for many of us, it takes at least several months to see noticeable progress, and for many of us, a year or more can go by, before we are able to attain remission from symptoms. We are all different, and we all have different levels of intestinal damage to overcome, and we all have our own healing rate. Kids heal quickly, older people heal much more slowly, and some of us have so much damage that has existed for so long, that, (like many celiacs), our intestines never heal completely. Also, we all have varying levels of sensitivity to gluten, (and other food sensitivities), which means that while some of us may be able to reach remission even though there might still be small amounts of gluten in our diet, some of us will never be able to achieve remission as long as there are even tiny traces of gluten in our diet.

ALso, gluten is not the only food sensitivity that we have to deal with. The vast majority of us who are sensitive to gluten, are also sensitive to casein, (the primary protein in all dairy products). In addition, at least half of us are sensitive to soy, and all legumes. Some of us have additional sensitivities, such as egg, yeast, corn, etc. Eliminating one or two food-sensitivities from the diet will not bring remission, if we continue to eat other foods that we are sensitive to.

The diet is not an easy, quick "cure", but it is the only way to stop the inflammation that causes this disease. The corticosteroids, (such as Entocort), can suppress the inflammation, and thereby temporarily relieve the symptoms, but they do not address the cause of the inflammation, (autoimmune reactions to certain food proteins), and so the generation of inflammation continues, as long as those foods are ingested. Taking Entocort, for example, makes it much easier to figure out other food sensitivities, since it will help to slow down, or stop the D. When we have uncontrollable, explosive D, all, or most of the time, it's almost impossible to determine what's causing it.

Obviously, this isn't a short-term treatment plan. The disease is incurable, (at least, within the scope of current medical technology), so we have to follow some sort of treatment regimen for the rest of our life, if we intend to take the control of our life back from the disease. The trick is to try to make the treatment as unobtrusive as possible, while still ensuring control of the disease. As an example of what's involved with long-term progress, here's a two-year update by a member:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=14175

Gluten antibody production by our immune system has a very long half-life, (stool tests at Enterolab are capable of detecting gluten antibodies in stool samples up to 2 years after gluten has been 100% eliminated from the diet, and those antibodies can be reliably detected, for at least half that period of time). Our bodies tend to become "addicted" to gluten, (no one finds it easy to stop eating it), and once we cut it out of our diet long enough to reach remission of MC symptoms, if we accidentally, (or intentionally), ingest some gluten, we are usually shocked to discover that we react much worse than we did originally. This is due to the heightened sensitivity of the immune system, once the initial chronic gluten "attack" has faded away. After our gut has mostly healed, though, and at least 2 or 3 years have gone by, (with absolutely no traces of gluten in the diet) so that the production of gluten antibodies finally fades away to minuscule levels, if we accidentally, (or intentionally), ingest gluten at that point, we will find that the reaction is much weaker, and doesn't last very long. If we continue to "abuse" gluten at that point, though, we will very quickly find ourselves back at square one, in a full flare of symptoms.

I hope that addresses your questions. If you have any further questions, please feel free to ask.

Tex

[sarkin]

I found that once I had eliminated gluten entirely for a few weeks (more than one month, less than two, as I recall), I got much sicker than I used to when I had even a very small amount (like inadvertent cross-contamination or 'secret ingredients' from a restaurant).

The real test, of course, is feeling better going GF ;) The idea you have to "prove" it by making yourself sick again is pretty funny to me, and not something I willingly would have put myself through once I was feeling better! Like most here, I had to eliminate dairy as well. That change (plus Pepto Bismol in the first couple of weeks) reduced my MC symptoms drastically. It takes some time to really feel better once gluten is out of your system (not just digestive symptoms, but any other body systems that may be affected, that you may not even have been aware of). You might expect to notice improvement within a month or two, but it is rare for people to feel better overnight. It's the difference between discontinuing an irritant, and having the body's irritation heal.

If you want to know for sure whether you react to gluten, you might consider Enterolab testing. That would be a faster path to certainty than an elimination test (as useful as that is), and far less risky/damaging than a gluten "challenge."

Are you just recently diagnosed with LC? How are you feeling?

--Sara

[Deb]

I quit eating gluten after finding this board. Shortly thereafter I ordered the Enterolab tests. After a few weeks of not eating gluten (but before I'd gotten my results from Enterolab) I thought I'd try a bowl of soba noodles. I got violently ill and knew without a doubt that gluten was a big problem for me. So far I am maintaining by just eliminating that.

[garina]

Tex,

Even though I was not the one to ask this question, your post answered a lot of questions I, too, had regarding gluten. Thank you for that.

Sara,

I have been GF for one week now, and I have felt better, and interestingly, my MC is a tad better. It will be interesting to see what one month brings. I am also anxious to get my EnteroLab results back.

BTW, my first loaf of bread baked in the machine is quite good. Taken from Bob's Red Mill Brown Rice Flour package on the back, "Walrus Bread". I did leave out the Xanthan Gum. I don't know what it does, but I didn't have any.

garina

[sarkin]

Garina,

Way to go - you're off to a great start. We have some real baking experts here, and I am not one of them! But I believe xanthan gum is used to make non-gluten flours behave more the way that gluten flours do (that stretchy quality in bread dough). Great to know that you don't need it to make a terrific loaf of bread!

It was after about my first GF week that I felt I had turned the corner, too. The road has definitely been longer than that, but it really is encouraging to see progress in how you feel overall, and in MC symptoms in particular. I'm really glad you're enjoying some reward for your efforts.

Deb,

I had a similar experience - people often apologize for 'tempting' me by eating something containing gluten, and I assure them it's not the slightest bit tempting! Glad to hear you're maintaining - maybe you went GF before your system was haywire enough to have additional food sensitivities, or maybe you are just lucky, but either way - I think it's great.

All my best,
Sara

[trialanderror]

Thanks for the responses. I was diagnosed with lymphocytic colitis about a year ago. It seems my symptoms really kicked in at about age 39, I then went to the doctor for my 40th birthday physical -- and ended up getting a colonoscopy a month or so later. Over the last year (I am now 41) I experimented with diets such as eliminating fiber and eliminating milk/lactose. I guess those helped a little. Then I found probiotics (sauerkraut, yogurt, etc.) and that works pretty good.

3 follow up questions:
1. Which Enterolab test is appropriate? Panel A+C was my initial reaction, but welcome your input.

2. Regarding gluten amounts: I remember reading some articles on celiac disease about a year ago that even TRACE AMOUNTS of gluten really caused problems. I read even 1 crumb from a knife or a crouton scraped off a salad was very problematic. Any knowledge on how much gluten creates a problem? I travel for work a lot (load up on the probiotics and immodium) and meet clients out for lunch and dinner. It seems impossible to go completely contaminant free at a restaurant. One could order meat and vegetables, but get contaminated with a little gluten from some source.

3. I have read some things that state in many people lymphocytic colitis just spontaneously remits in a few years. Any knowledge of that?

Thanks,

[tex]

1. Which Enterolab test is appropriate? Panel A+C was my initial reaction, but welcome your input.

If money is not a consideration, that's probably a good choice. However, be aware that many insurance companies do not yet cover the cost of these tests. If that's the case, Panel B might be a more effective use of your money, since it covers the most likely food sensitivities, plus the gene test. For some of us, the gene test reveals more information than meets the eye, at first glance. Without the gene test, Panel A is even more economical, and covers the same foods.

Any knowledge on how much gluten creates a problem?

The gluten sensitivity reaction threshold seems to vary for each of us. Some of us are more sensitive than a typical celiac, while others seem to be able to tolerate the trace amounts that you mention, with significant problems. (Celiacs differ in their sensitivity thresholds, also, of course). On the average, I would guess that most of us might be able to tolerate something on the order of a single tiny crumb, but not much more than that, without reacting. Something like that is hard to quantify, but many of us can relate situations where we reacted to a crumb.

3. I have read some things that state in many people lymphocytic colitis just spontaneously remits in a few years. Any knowledge of that?

We all certainly wish that were true. I can cite several old, (20-year old), research articles that make such a claim, but so far, I can count on the fingers of one hand, the number of members of this board, who have found that to be true, and even those members find that every so often, they relapse, and have to limit their diet, or take a med, to regain remission. Since we have almost a thousand members, that suggests that less than one percent of us are lucky enough to not have constant, unrelenting symptoms, (unless we meticulously follow our treatment plan at all times). Some of us here have been waiting for over 10 years for that "miraculous" spontaneous remission to occur. Alas, so far, it hasn't happened. IOW, for the vast majority of us, the claims of those researchers are pure BS, thus proving once again, that medical research is riddled with false findings that are never corrected, once published.

You're most welcome,

Tex