adding back gluten

[trialanderror]

I have LC and have been gluten free for 6 months. I have also been soy, dairy, and egg free for a number of months. I have also tried the Pepto treatment (8 tablets/day for 8 weeks) and completed a 2 month course of Entocort about a month ago.

My LC has improved, but is certainly not cured. By this I mean I don't have multiple bouts of diarrhea per day, but I don't have solid stool either. I typically have one mushy bowel movement per day, and occassional diarrhea (maybe once or twice a week).

At any rate, I plan to add certain foods back in gradually and am starting with gluten. I plan to start eating a wheat bagel every day for breakfast.

Does any one know the time until people usually experience symptoms? Is it minutes, hours, days, or weeks until the symptoms (i.e., diarrhea) returns?

Thanks,

[Stanz]

You're a brave soul - or a masochist - you can decide which

For me the reaction is minutes and can last for days.

[MBombardier]

If you are not experiencing norman, then you are reacting to something else. If I were you, instead of adding foods back, I would be taking more out. For me, it wasn't just gluten, it was all grains. As I am in remission now, I can eat oats, and even rice on occasion. It wasn't just soy, it was all legumes. Now I can eat peas, but I still can't eat peanut butter. For dairy, now that I am in remission, I can eat butter. I can eat eggs if they are an ingredient in something else, like meatloaf.

You are the one in charge of your own health, of course. But to me, adding back gluten is the last thing you should be thinking about. The reaction can start in minutes, and you can be sicker than you can imagine, with chills,fever, nausea, perhaps vomiting, and non-stop diarrhea. Even when there is nothing coming out, you can still be stuck on the toilet feeling like a truck ran over you with stiffness and sore joints, and brain fog so thick you are not even sure what day it is. Do you really want to do that to yourself?

[tex]

At any rate, I plan to add certain foods back in gradually and am starting with gluten. I plan to start eating a wheat bagel every day for breakfast.

If you're not yet in complete remission, then why are you trying to add back the very foods that are causing your inflammation? I don't understand your logic. As Marliss points out, lack of total remission means that you need to eliminate an additional food-sensitivity, (or food-sensitivities), not go back to eating the foods that caused your problems in the first place. The setback caused by eating gluten for a week or more will not only delay the healing process for your intestines, but it may undo all the healing that has occurred up to this point, if you continue it long enough. The damage done to the intestines by gluten over a period of a month, can take a year or more to heal, unless you are very young, (pre-adolescent). Besides, 6 months is not long enough to reach complete remission for many of us - it sometimes takes a year or more. It took me a year and a half, because I kept adding foods back in, instead of keeping them out, once I removed them from the diet. I never added gluten back in, though - once I took it out, it stayed out, because gluten causes long-term damage to the intestines, unlike most other food-sensitivities.

Of course, as Connie says, a gluten challenge is a good way to prove that you're gluten-sensitive, (unless, of course, you happen to be one of the many who are asymptomatic). It's difficult to say how long it will take to begin showing symptoms. It can take anywhere from 10 minutes to several months, depending on your immune system, and your stage of healing

As they say on Broadway, "Break a leg!" For someone with MC, I suppose that would have to be revised to, "Bust a gut!" Anyway, good luck with your challenge, and if it happens to take weeks or months to react, please don't conclude that means that you are not gluten-sensitive. Most people doing a gluten-challenge eat at least the equivalent of 2 slices of bread each day, to ensure a good, definitive challenge, but a bagel may be a reasonable amount.

Please keep us updated on how it goes, because you're not the only one who has ever wanted to do a gluten challenge, and we learn a lot from each others' experiences.

Tex

[Gloria]

T & E,

Remember that being off Entocort for a month or so means that it is still in your system and subduing reactions that you might have to certain foods. It takes at least 56 days for Entocort to be completely out of your system; in my experience it may be even longer.

We all hope we really don't have to give up so many foods, and we all want to test them. From what I've read over the years on the board, it takes a long time of healing before it's safe to test foods. You're the best judge of your situation, of course.

Gloria

[starfire]

I would consider a bagel a day an excellent challenge since 1/2 a bagel for 2 or 3 days does a good job of tearing me up.

Good Luck,

Shirley

[trialanderror]

So I have been eating 2 mini bagels for breakfast for the last couple days. I also ate 5 or 6 chocolate chip cookies each of the first 2 days (which would have small amounts of dairy and egg, and maybe soy).

No change in symptoms. As a matter of fact, I actually feel better than normal (but my job is usually quite stressful and it has been calm this week -- and I have no doubt stress is a big factor).

The one thing I noticed (and may be completely unrelated) is that a small rash on my arm seems to have come back.

If nothing else, I know that I can eat a fair amount of gluten without running to the bathroom.

[tex]

The one thing I noticed (and may be completely unrelated) is that a small rash on my arm seems to have come back.

Keep an eye on it, because it's not very likely to be unrelated. Some of us don't get GI symptoms from food-sensitivities - we get various other symptoms, often skin problems or neurological issues.

Tex

[draperygoddess]

T & E,

For several months after I went GF, I might not even notice if I accidentally ate something with gluten in it, because my reaction was mild compared to some of my other sensitivities. However, I have learned that lack of raging D doesn't mean there's not something going on. (And incidentally, the last time I got glutened, it was not pretty.) If you're gluten-intolerant, that one thing is going to keep your system in an uproar, causing you to react to other things as well. You might not notice it at first, but watch for it over the course of the next week or two. As far as the rash goes, I had a recurrent rash on my hands and fingers that went away when I went GF. I'm convinced it was dermatitis herpetiformis, though it wasn't in the typical places. Even if you're not having digestive issues, DH (if that's what yours is) is an indicator that your body is not handling gluten well.

Good luck with your challenge and let us know how you're doing!

[trialanderror]

Has anyone gone gluten free and had it NOT work to control their MC?

I have been gluten free for 7 months, dairy free for 5 months, and egg, soy, oat, and beef free for 4. I also cut out bananas (I am allergic to kiwi and I guess they are in the same family).

As discussed above, I did a one week gluten challenge with no digestive problems. I also did a one week soy challenge (about 1 cup of soymilk / day) with no digestive problems. Apart from that I have been pretty strict on all the foods (although undoubtably with traveling and eating out I have gotten some of the above items).

As long as I take probiotics I seem to be fine. I just went off probiotics today and can feel it raging inside.

One person above suggested I should cut out more foods. Any suggestions on how to do that? Is there some other helpful test (MRT?) in addition to Dr. Fine's to help you to decide what to cut out? Or is it just eat vegetables for a week and then add in one food at a time?

Thanks,

[tex]

Has anyone gone gluten free and had it NOT work to control their MC?

Sure, a lot of us have had that problem. Some of us just needed more time, but most of us have discovered other food sensitivities, or found that we were taking a med or a supplement, (or a hormone treatment, either oral or transdermal), that was preventing us from reaching remission.

I'm confused - you say that you did a gluten challenge with no digestive problems, and yet in your first sentence, you implied that your MC is not in control. That's a contradiction. How could you not have digestive problems if your MC symptoms are not in control? if your MC symptoms are not under control, how in the world did you expect to learn anything from a gluten challenge, or a soy challenge? You have to be in remission to do that, because if you're currently still in a flare, you're not going to be able to tell the difference - been there, done that, and unfortunately, it usually won't work.

Assuming that your first sentence is correct, (that your symptoms are not under control), IMO, your problem is that you are eating a low-gluten, low-casein, low-soy, etc., diet. Unfortunately, pretty strict won't do the job, with this disease. You gut is unlikely to ever heal if you are regularly eating small amounts of gluten and other food-sensitivities, because every time you do that, the healing process has to start over.

Unfortunately, we can't control this disease by part-time or partial methods - the only way to do it is by dedication and perseverance, 100% of the time. This is a tough disease to control, and it has to have all of our attention, all of the time, to bring it under control.

Mediator response testing , (MRT), can be a very handy tool, if used right, and many members have used it to help isolate their remaining food-sensitivities. To do it right, after you get the MRT test results, your food-testing program needs to be managed by a dietitian who is specially trained, and certified to work with the MRT program.

I hope that you can track down the problem, (or problems), without restricting your diet unnecessarily, but you do have to eliminate your major food-sensitivities, especially gluten, casein, (and soy, if you are sensitive to it), 100%. 99% won't work, unless you happen to be lucky enough to have a very high reaction threshold, (which is pretty rare, with this disease - most of us are more sensitive to gluten than the average celiac).

Tex

[trialanderror]

Well, I guess their are different levels of "in control" just like there might be different definitions of success. After going off of Entocort in early December, I did not have D, but wouldn't describe things as 100% solid. So I was definitely not flaring, but had mushy stool about once per day = a decent quality of life.

Adding gluten for a week and then soy for another (in late January) did not cause D, or any worsening of symptoms. I then went back to gluten and soy free.

It seems that my syptoms are slowly getting worse, such that I am relying on probiotics. I went off probiotics yesterday and immediately felt worse with 3 bowel movements, but I will give it a couple days to see if that was unrelated (today I feel pretty good).

Maybe your 100% comment is correct, and even small amounts are the problem.

[tex]

Your definition of "in control" is definitely different than mine. While I'll be the first to admit that osmotic D is much easier to live with than secretory D, it's still D, just a different type.

It's certainly not impossible that you might not be gluten-sensitive, but usually, that only applies to people who have drug-induced MC. To do a real gluten challenge, you might need to eat gluten for a lot longer than just a week, because some people don't begin to react again for a month or two, and some actually take over a year, to begin reacting to gluten, again. Of course, most of us react very quickly, but everyone has different reaction routines, so just about anything is possible.

Here's the point. In order to have any food sensitivities at all, gluten-sensitivity is about 99.99% essential. IOW, if you're not gluten-sensitive, then you probably don't have any food-sensitivities. That's just the way it works in real life. So following this line of reasoning, the next question would be, if you don't have any food sensitivities, then what else is preventing you from achieving remission? Obviously, something is causing it. Do you see the dilemma?

It's also not impossible that your MC symptoms could be due to a bacterial infection of some sort, or some other intestinal pathogen. The fact that a probiotic helps, would certainly be compatible with that possibility. Has your doctor done any stool cultures to rule out that possibility? MC can be caused by all sorts of things.

Another thing to consider is that if you did happen to have a bacterial infection, the infection would capture your immune system's attention, so that you probably would not react to gluten, no matter how sensitive you might be. The immune system only focuses on the primary problem confronting it, at any given point in time.

Maybe your 100% comment is correct, and even small amounts are the problem.

That's a very common problem, and I'm speaking from experience. I follow a very strict diet, but last December, when I suspected a cross-contamination problem, an anti-gliadin antibody test at EnteroLab verified that I had a relatively high level of antibodies - 64, (10 is the breakpoint). That's mighty high for someone on a GF diet for over 9 years. After I improved the standards to minimize the risk of cross-contamination in the kitchen, the D finally resolved in January.

Tex