Newly Diagnosed

[Melanie]

Hello, I was diagnosed with a "mild" case of LC several weeks ago. After finding this site and reading, my head is spinning! I definitely seem to have a mild case compared to many of you. But I suspect this journey is just beginning and that things can get much worse very quickly. I had been gluten free for about 6 months to try and clear up an unexplained rash I've had for over a year. The gluten free diet didn't clear it up and so I added gluten back in. About 2 weeks later, the gurgling in my tummy started and for the first time in my life I started having trouble with diarrea. I've ALWAYS dealt with constipation since I was a little girl. So began the barrage of testing. During this time, I would go from D to C to D.... Once I get things under control eating mostly bananas and rice, things will clear up and I'll be fine eating whatever I want basically for a couple of weeks and then something will trigger the D again and I'm back to square one. I had my colonoscopy a few weeks ago and seemed to do okay afterward for a couple of weeks. Then, once again, something triggered the D and I am currently trying to get everything under control. When I got my results of lymphocytic colitis, I was at first relieved to at least have a diagnosis, but after doing some research, I am not so relieved anymore. Now, I'm trying to stay positive.....

Anyway, I am ready to do whatever I need to do to heal this thing. I tend to gravitate toward the natural realm rather than drugs. I have been taking pepto---I can't tell if it's helping or making my stomach hurt worse. One of the many questions I have is could it be a gluten intolerance if it takes up to two weeks to manifest symptoms? I'm guessing what I need to do is eliminate gluten, dairy, and soy and then add them back in. My question is, though, how long do you give it to get a reaction? If you react right away then you assume it's a problem? Can it take a few weeks?

I also see many are doing the paleo diet, but right now, rice is one of the few things I can eat without any kind of reaction, so that may be something to consider once I have my symptoms under control.

I do have a concern about my weight. I am already underweight, so I am afraid of losing more. Any advice on getting enough calories in? I adopted a healthier lifestyle a couple of years ago----organic whenever possible, no chemicals or preservatives, etc., so my family thinks this is due to that change. I have changed my diet a lot in the last 6 months going from no gluten to gluten and then I did a 5 day juicing fast (but that did include vegetables--not just juice. Just no animal proteins.) Could dietary changes like that have caused this? I do find it frustrating that everything falls apart when I was trying to get healthier.

Thanks in advance to any answers, encouragement, etc.

Melanie

[tex]

Hi Melanie,

Welcome to our internet family. I realize it's no consolation, but I had basically the same type of reaction pattern - C for most of my life, then one day the D started and wouldn't stop, and then I had alternating D and C, until I figured out how to get my symptoms under control. There's no known cure for LC, but the symptoms can certainly be controlled, usually by diet changes alone, for most of us.

One of the many questions I have is could it be a gluten intolerance if it takes up to two weeks to manifest symptoms?

Yes. In general, the higher our antibody levels, and the lower our sensitivity threshold, the faster we react. The other way to verify your main food-sensitivities is by stool testing, at EnteroLab, in Dallas, TX, (the only lab that can accurately detect the type of food-sensitivities that accompany MC).

I'm guessing what I need to do is eliminate gluten, dairy, and soy and then add them back in. My question is, though, how long do you give it to get a reaction?

You are correct. Ideally, one eats a "safe" diet, until free of symptoms, (both D and C), then challenge your immune system with one of the suspect foods, and look for a reaction. If no reaction occurs, then go on to try the next suspect food, etc,

If you react right away then you assume it's a problem? Can it take a few weeks?

Yes, and if the reaction occurs within only 15 or 20 minutes, that suggests the possibility of mast cell issues. Normally, we react within a couple of days, but longer times are possible if your residual antibody level is relatively low, and your reaction threshold is relatively high. A few celiacs, for example, have been documented to take over a year to react to a gluten challenge, after avoiding it for a while. Such long reaction lags are rather uncommon, though. The first time I tried an oat challenge, I hadn't eaten any oats in years, and it took me 6 weeks to react. Once my antibody levels were up, though, I reacted within 3 to 6 hours after I ate any oats, (pure oats - not cross-contaminated).

Food sensitivities may not cause MC, but once the genes that predispose to the disease are triggered, the genes that predispose to food-sensitivities are usually triggered at the same time. That's the part that stumps most GI docs, who claim that diet has nothing to do with the disease.

Again, welcome aboard, and please feel free to ask anything. You obviously have a proactive approach, and a willingness to do what is necessary, so I have no doubt that you will be able to get your life back, and we'll try to help, in any way we can.

Tex (Wayne)

[Melanie]

Thanks for your quick reply! I am so grateful for this group where I can really get some answers. I have another question about food sensitivity. If you react once, will you react every time you have that food? I ask this because when I did my 5 day juice fast with just fruits and vegetables (I gradually faded out animal proteins so I was without dairy for about a week), the first thing I added back in was butter. Within 20 minutes I had a bout of D. But I've had butter ever since, and it doesn't seem to be a problem. Like when I have an episode of D, I eat rice, potatoes and bananas to get myself back on tract and I always have butter on my rice and potatoes. And it doesn't cause any D then. Could that just have been my body not being used to animal proteins when I reacted to the butter? From what I understand from your reply, if I have a problem with the food, my antibodies should be up and I should be reacting to it worse the more I eat it, right? Sorry, this is all so confusing to me!

I can't imagine not having either D or C! Although, can we define C? The medical community determines that it is if you go 3 days without having any movement. I have always wanted to go every day or at least every other day. I would use magnesium citrate before bed to help that along if I hadn't gone that day. But you're saying that everything should just normalize on its own if I get rid of the allergic foods?

I guess my only way to know for sure to do the lab testing. I saw on their website that many times insurance will cover it. Anyone find this to be true?

Also, is it common to also have acid reflux type symptoms with this? I have an irritation in the right side of my neck when I breathe deeply. This seems to visit me when I am having issues and go away when things are better with my stomach. It also is worse when I am lying down---if I sleep propped up a bit it is much better. This leads me to believe GERD may be the problem even though I have no heartburn or anything like that.

Again, sorry for the barrage of questions! Just so grateful to have people to ask who have been or are going through this stuff. Thanks, Tex, for all your knowledge and taking the time to help others! It definitely shows what kind of person you are

[tex]

If you react once, will you react every time you have that food?

Yes and no. For all but a very small percentage of people, that is true. For a very small percentage of cases, though, tolerance is achieved, if they continue to eat the food that causes the reaction. Of course, no research data exist for MC, but such data do exist for celiac disease, and gluten-sensitivity. Consider the following quote, from a research report that disputes the the requirement of villus atrophy for the diagnosis of celiac disease:

Surprisingly, two out of the 13 patients evinced mucosal atrophy shortly after the beginning of the gluten challenge, but their mucosa eventually normalised when the gluten ingestion continued. The authors concluded that there might be some patients with coeliac disease who may develop true latency and tolerance against dietary gluten.

http://gut.bmj.com/content/56/10/1339.extract

Note that these two patients almost surely produce antibodies to gluten in their stool, but since the mainstream medical community doesn't yet recognize the value of stool testing, that was not checked as part of the project. Normally, patients such as these are almost never properly diagnosed. I have a hunch that they are far more common than this research project indicates, because there is no incentive for them to be diagnosed, until some additional health problem, (such as MC), develops, due to the untreated celiac disease.

I avoided all dairy products during my recovery, (because I reacted to them), but afterwards, like you, I discovered that I could tolerate them. For years, I never gave it a thought, and sometimes I ate dairy, and sometimes I didn't. Last fall, I decided to find out once and for all, so I ate dairy regularly for a few months, and then in December I had a stool test done. Guess what? I clearly tested positive to casein antibodies, beyond a shadow of doubt. I also tested high in anti-gliadin, (gluten), antibodies due to an apparent cross-contamination problem, (which I had suspected, and which was the reason for doing the tests in the first place).

Sooooooo, based your description, I have little doubt that you and I both fall into the same category as the two subjects mentioned in the research above, except that casein is the asymptomatic issue in our case, rather than gluten, (or maybe even in addition to gluten). For all I know, though, we may have other food sensitivities that manifest the same way, and this can really complicate the issue. It's a very complex issue, so yes, it can be very confusing. But if you think you're confused, what about the doctors - most of them are so lost that they simply deny that food sensitivities have anything to do with MC.

Everyone's BM pattern is different, so we all have our own definition of what is normal, what is D, and what is C. Most people have a similar understanding of D, but opinions on what is normal, and what is C, definitely vary. For most of us, once we eliminate the problem foods from our diets, and our intestines heal, we tend to have BMs that should fit the definition of "normal". Diet matters, though, so if someone is going to load up on hot, spicy foods all day, they shouldn't be surprised to have D, and diets high in sugary fruits are likely to cause "mushy" stools, where diets low in fiber and sugar are going to produce generally solid, firm, well-formed stools, which some people would label as C, while others would consider them to be normal.

I saw on their website that many times insurance will cover it. Anyone find this to be true?

More and more insurance companies are beginning to pay for these tests, but there are still many that don't, and many/most of them require that a doctor must order the test in order for it to qualify for coverage. And the problem, of course, is that not many doctors recognize the benefits of these tests, yet, though that is changing, also. If you ask, EnteroLab will be happy to give you the insurance codes for these tests, and then you can call your insurance company to find out if they are covered, (and whether or not they have to be ordered by a doctor).

Acid reflux/GERD is very common with this disease. For one thing, people who have low vitamin D tend to develop IBDs at a much higher rate than people who have adequate vitamin D levels. Additionally, IBDs have been shown to rapidly deplete vitamin D levels. And, low vitamin D levels are associated with GERD. The gas/bloating that's frequently associated with MC also promotes GERD, obviously, since it provides back pressure on the lower esophageal sphincter, (LES).

My advice to those who have this problem is to take plenty of vitamin D supplement, (at least 5,000 IU daily - more if you know for a fact that you are deficient), don't eat within several hours before bedtime, and never lie on your right side, (because this places the LES below the stomach, virtually guaranteeing a backflow of stomach contents, in case the LES should not remain tightly clinched. Also, avoiding certain foods that promote reflux can help, such as coffee, citrus fruits, (including tomatoes), onions, peppers, garlic, peppermint, high-fat foods, alcohol, chocolate, and carbonated drinks. Definitely don't eat any of these in the few hours before bedtime. As you do this for awhile, your LES will slowly strengthen, and you will become more resistant to GERD, (unless you take a PPI - PPIs weaken the LES, and guarantee that you will have reflux). PPIs are one of the cruelest jokes ever played on consumers by the pharmaceutical and medical communities. True, they lower the acid content of any reflux that occurs, but they guarantee that you will have reflux, because the stronger the acid on the backside of the LES, the tighter it clinches. As the acidity of the stomach is reduced, the LES relaxes, (and reflux can occur).

You're more than welcome - I've had all these issues myself, at one time or another, so I understand what it's like.

Tex

[MBombardier]

Melanie!

Many of us, including me, have GERD issues as part of our reaction. In fact, now that I am in remission, heartburn is a signal that I have eaten something I shouldn't. I have a friend who has damage in her esophagus from GERD and she has never had heartburn in her life.

As far as the butter, I think sometimes--and Tex or someone else will have to verify this--that it is a desensitization issue, for lack of a better term. Kind of like allergy shots. We can eat a food that our bodies are sensitive to, and they will react at first (or perhaps it is mild, or we don't notice it) but we continue eating it, bulling through any symptoms until they stop. We come to the conclusion that we are not sensitive to it after all; however, that doesn't mean there isn't damage occurring.

I was asymptomatic to gluten and everything else. I was dx in Sept. 2010, ran across Dr. Fine's site, and after reading on there decided to go GF. Three weeks after that I accidentally consumed gluten, and for the first time in my life reacted to it. I have come to the conclusion, based on my diagnosis, my reaction to challenging a suspect food, gene testing, and my family history, that I probably have severe damage in my gut. My reaction, severe for me, may be considered milder than some, but we are all different and cannot base the degree of illness or damage on comparison with someone else.

[tex]

Marliss,

I agree with your assessment of the tolerance phenomenon 100%. I believe that is exactly what happens in many cases, because we have such a high percentage of new members who insist that they have few or no food sensitivities, and yet when they avoid the foods for a while, and then challenge their immune system, they discover that they are indeed sensitive.

Tex