I am so glad I found this site...

[tictax707]

This is my first post. I have celiac sprue and MC (diagnosed 2002 & 2003, respectively). I was exposed to gluten about month ago when I found a crouton at the bottom of my salad at a restaurant, and have been struggling to get better ever since. I had been extremely healthy with no colitis flare-ups in almost a year, and no (known) gluten exposures in many years. Although I am very cautious when eating out, and I adhere to the gluten free diet 100%, it still boggles my mind that I am this sick from a crouton I didn't even eat...

It's hard because I realize that chronic conditions like this are not like the common cold. It seems like with a cold improvements are linear. With this disease it is not the same. I get a little better, then worse, then a little better than before, and then much worse. Last night I pretty much spent the night in the bathroom. I fell asleep curled up like the "potty people" icon on this page. I was afraid to go back to bed.

I have been on celiac.com, which is a great resource, but it does not have the aspect of the colitis that this site has. I feel a little bit more hope now just finding that this place exists and more importantly that people actively post to it.

I've been on Asacol since 2003, and on the whole I am happy with it. However, given how the past 4-5 weeks have been going I am beginning to wonder if I need to get the steroid shot. During flare ups I try to be really nice & gentle to my body. I can only really eat cream of rice & a GF/DF meal replacement from Canada, designed especially for the inflamed GI. As I start to feel better I slowly introduce foods. I'm also using probiotics.

I'm just really beat down right now - I am 100% sure I'm not the first. I am relieved I am not alone. I do really think I will get better. But I am just not there yet, and when my insides are as inflamed as they are right now it's just miserable. So, thanks for existing...

[tex]

Hi,

Welcome to our internet family. I'm sorry to read that you're having such a tough time getting over a flare. That suggests to me that, (like most of us here), you have other food sensitivities. In addition to gluten, most of us are also sensitive to casein, (the primary protein in all dairy products), and about half of us are sensitive to soy. Some of us have many other food sensitivities. We are all different, so one treatment will not fit everyone who has the disease. Additional food sensitivities such as these, are typically why many of us are unable to achieve and/or maintain remission, and IMO, they are a primary reason why so many celiacs also develop MC.

I hope that you can find your solutions here. Basically, we find that each of us must fine-tune our diet to match our personal needs, but by doing so, we can definitely get our life back. Drugs can help to suppress the inflammation that causes MC, but they cannot prevent it from occurring in the first place. Only changes to the diet can do that, so that's basically what we concentrate on here. We learn from each other, what works, and what doesn't work.

Also, please be aware that because MC is a syndrome caused by inflammation of the mucosa of the colon, (and in some cases, other sections of the GI tract), fiber is contraindicated, and tends to make flares worse, or extends their duration. Technically, we are not sensitive to it in the sense of it causing an autoimmune reaction, but it definitely serves to irritate our gut, so the less of it we ingest, the better off we are, (until the gut is able to heal, which can sometimes take quite a few months, or even years).

Unfortunately, MC is much more difficult to control than celiac sprue, but if you carefully treat your MC, then your celiac issues will be automatically controlled. Again, welcome aboard, and please feel free to ask anything.

Tex

[Joefnh]

Hi TicTax and welcome from New Hampshire, Tex basically covered the highlights. In the end we each find that a mix of diet and meds if necessary is enough to bring some form of remission. I was dxd last April with Crohns and CC. I am currently avoiding gluten, soy and dairy. I also through testing have identified several other foods that i need to avoid. For meds I take Imuran and alupurinol. These are immune system suppressants mostly to help the Crohns.

Welcome again and best wishes

Joe

[Gloria]

WELCOME TICTAX!!!

I'm sorry that you are suffering with both celiac and MC. As Tex said, the treatment for MC automatically includes treatment for celiac. MC treatment usually means having to avoid additional foods. Hopefully you won't need to eliminate much more than the three major once that Tex mentioned.

Continue to read - there are many posts which you will find helpful. If you want to search for a topic, click on the Search link directly beneath the Google search box.

We look forward to getting to know you.

Gloria

[tictax707]

Thank you all for the support and prompt attention. I felt immensely relieved when Tex pointed out how much harder the MC is to control than the celiac. I really feel like most of my battles are with the colitis and fine tuning my diet like was mentioned. I wish that gluten was my only problem, but my body has told me otherwise, and I just try my best to listen.

One question though - has anyone found that their food intolerances change with time? I understand that the list can always get longer, but has anyone found that certain foods can ever be re-introduced? Before this recent flare up, I blew my own mind by being able to eat a piece of cheese without any problems, having been casein free since before I was diagnosed...

[sarkin]

Hi and welcome, TicTax.

You have come to the right place - I got here about a month ago, after a night much like the one you just experienced. I'm so sorry you needed to find your way here, but I hope you're heartened as you browse the site that you have found a great resource for MC folks.

SO harsh that one uneaten crouton derailed you. But I hope that crouton leads you to figuring out how to achieve long-lasting remission, with or without meds. I learned here that some MC-ers need a more restricted diet than some celiac-people. Whether that has to do with genetics (partly, for sure), or length of time to diagnosis, or other factors (including luck?) isn't clear to me, but - there's a lot of experience here suggesting that eliminating wheat/gluten alone isn't enough to get us in the clear, once the MC is activated. I'm feeling much better after a few weeks of pepto (not for everyone, but has helped me) plus elimination of all grains/legumes/dairy. I'm hoping that restriction is more than I'll need eventually, but want to get rid of all symptoms first, and then explore what I can add back... I have reached the point in my life where I'd rather delay gratification than prolong suffering ;)

Stay hydrated, stay hopeful, and all the best to you on this path to wellness,

Sara

[tex]

but has anyone found that certain foods can ever be re-introduced?

Yes, definitely. Some of the foods that we have to avoid while our intestines are healing do not cause us to have an autoimmune reaction, but they serve as irritants, instead, and they prolong the inflammation by aggravating the mucosa of the intestines, when it is already in an ultrasensitive state. Fiber is an example of this, and for many of us, sugar can cause problems, if eaten in significant amounts. Sensitivities such as gluten, casein, and soy seem to be forever, though. Virtually all artificial sweeteners also cause problems for most of us. Many of us test sensitive to dietary yeast, (based on a stool test at Entoerolab), while we are reacting, but after healing takes place, typically, it is no longer a problem.

Because of the fiber, many of us have to avoid most fruits and many vegetables until we get our symptoms under control. Some of us can handle some fruits and vegges as long as we peel them, (most of the fiber is in the peel), and not only cook them, but overcook them, so that they are as easy to digest as baby food.

Tex

[Gloria]

has anyone found that certain foods can ever be re-introduced?

That is the million-dollar question. We all hope that the elimination of some of our favorite foods is only temporary.

In general, we've found that there are intolerances, and irritants. Irritants (such as high-fiber foods, lettuce, and others) can generally be added back once the gut is healed. Intolerances, however, may or may not be permanent. If the intolerance is to a protein in a food, as is the case with gluen, casein, soy, and eggs, we usually cannot add them back to our diet without stimulating a reaction.

We usually wait to test forbidden foods until our gut is healed, and then we do it very carefully.

Gloria

[tictax707]

aaahhh yes! "irritants." That's a good word. Since I am so inflamed right now it seems like *everything* is an irritant. But when I am healed, I know that there are some "forbidden" foods that I can have in small amounts. Is the consensus that eating small amounts of these irritant foods will help you tolerate them better over time or will eating small amounts just slowly drive my GI tract batty? Thanks again... for just existing.

[Gloria]

Is the consensus that eating small amounts of these irritant foods will help you tolerate them better over time or will eating small amounts just slowly drive my GI tract batty?

I think the consensus on this board is that we should avoid all irritants until we are healed because they prolong the healing process. I have heard the other theory of eating them so that they don't become foreign to the body. I'm not sure how well that works. Perhaps someone else has experience they can share.

Gloria

[sarkin]

Tictrax, I'm here a month and still learning - so I haven't figured out all my foods. You'll get amazing insight here from those who have gone farther down this road. Many people have benefited through MRT testing, and I hope to go that route once I stabilize - it identifies in detail which foods are highly likely to trigger a reaction for you, which are very likely safe, and which are in the middle. You will hear more about this, especially from resident expert Mary Beth - she shared her son's wisdom that it's better to think about what you *can* eat than what you can't. But you'll also hear from others exploring that path and other approaches (diet, medicine, alternative - and more).

A lot of people have added foods back in. And equally inspiring, some members who currently have very limited diets share their remarkable menu ingenuity, and their research into foods homemade or purchased (marzipan! chocolate! popsicles! and that's just in the last few days....) There's a new forum where members are posting the details of ingredients from commercially available products in great detail (for some of our members, 'natural flavor' might include an irritant - when a company lets someone know what they're using for flavor, it makes a huge difference!).

I'm currently eating from a limited, and largely homemade list, to a (perhaps) extreme degree. I'm leaving out a lot of our former standard fare, but keeping deliciousness in the mix ;) I feel amazingly better after 4 weeks, though not perfect. I believe that's a combination of luck, and also an indication that this approach is working for me.

I agree with Gloria's thinking - to approach re-testing 'irritant' foods only after a period of comfort and stability. That's why I'm going super-limited now; I think I'll have a better shot down the road at a broader diet if I can recover and achieve a steady state first.

I hope you're already beginning to feel better. What works for you may be very individual, but I hope you find a path soon to lasting relief and healing.

Best,
Sara

[Gabes-Apg]

in a similar area to this topic is the question 'is it an intolerance or an allergy'

with such things as the MRT and the BIA we are gaining information about ingredients or outside influences (such as metal toxicity) that is causing a reaction some of these are intolerances and some are allergy.

IMO - regardless of if it is intolerance or allergy, either reaction is having impact on our bodies, we may get away with small amounts or treats at the time, but how do we know that this is not building to the bigger reactions such as chronic symptoms, how many small treats can we have before there is a chronic reaction? Anything that we are react to is causing stress on our adrenals and our immune system.

[tex]

IMO - regardless of if it is intolerance or allergy, either reaction is having impact on our bodies, we may get away with small amounts or treats at the time, but how do we know that this is not building to the bigger reactions such as chronic symptoms, how many small treats can we have before there is a chronic reaction? Anything that we are react to is causing stress on our adrenals and our immune system.

So true. I apparently am intolerant of only gluten, (and sorbitol and possibly artificial sweeteners in general). Initially, I was as sick as a dog, and I thought I was a celiac, so I cut out all gluten, kept a food/reaction diary, and for a year and a half, I "tested" myself on various foods, but I continued to get sick. Few things were a problem immediately, but everything other than plain meat, potatoes, rice, green beans, squash, and broccoli, seemed to make me sick after a couple of days or so. I kept avoiding various foods and then "challenging" myself with them every few weeks or so, without making any real progress. This went on for a year and a half, and at that point I decided to just cut out everything except the meat, potatoes, rice, and the few overcooked veggies that never seemed to bother me, and in a little over a week, I was in remission.

I followed that very restricted diet for almost 2 years, and then I started reintroducing foods again, and I found that by eating only small amounts of a "new" food at a time, at first, and then waiting about a week before trying it again, I was able to slowly increase the amounts, (as my gut bacteria adjusted population levels to reflect my diet changes, so that they were better able to aid digestion), and I eventually was able to eat virtually anything I wanted. (Of course, I never touched gluten again, and I never will). Surprisingly, I was even able to reintroduce dairy products and normal amounts of sugar, (sugar was a big no-no for me when I was reacting).

Of course, we are all different, so YMMV.

Tex

[tictax707]

Thanks, Tex. That's exactly the story I was hoping to hear. I was like you first described up until a few years ago. It's like I was in denial of my body's reactions or something. If there was something that was gluten and dairy free I couldn't understand why it could still hurt me. Finally I realized that was a pointless and silly battle and if I thought an ingredient might cause problems I just wouldn't eat it and never looked back. Thankfully I still had many other food choices and it really, really helped keep things in remission.

I suppose I didn't make it clear that I had no intentions of experimenting with irritant foods at this moment. (that would be suicide). I was thinking more when I got better and I had been better for a few weeks. Once I get better I still like to take things really slow and easy and enjoy the fact I can eat "real food" (read: plain GF toast, bananas, super mushy carrots, etc) as opposed to cream of rice. I feel like if I can get little improvements here and there I can be patient for improvements in the long haul. The tough part is creating those little improvements now. Even though I am not eating normally, I am celebrating that I slept in my own bed and not in the bathroom.

But I am disappointed in my GI - called first thing this morning and pleaded with the scheduling nurse who said she would call me back. I have a funny feeling she will get back to me at a very leisurely pace - maybe by... Wednesday. When you can only handle one small bowl of cream of rice a day, Wednesday is a long way away.

[tex]

When you can only handle one small bowl of cream of rice a day, Wednesday is a long way away.

That seems to be a problem with most GI doctors and their staff. IMO, one of the prerequisites for becoming certified as a GI specialist, should be about a month's worth of drug-induced colitis, so that they could experience first hand, what their patients are having to deal with on a daily basis. About 2-weeks worth of colitis should be sufficient for any nurses who do the scheduling. I have no doubt that such a program would teach them to respect the disease, and the patients who have to live with it. Currently, they are taught in med school that MC is a "nuisance disease", with a benign course, so they never realize how life-altering it can be.

We don't expect them to be able to perform miracles - all we ask of them is a little compassion and understanding.

Tex