Is it Post-Infectious IBS, MC or Celiac?

[Fiona]

Hi, I'm new here and not sure that I actually have MC, but based on the head-spinning amount of information I've read on this forum and elsewhere on the internet, I probably do, and I'd really appreciate the opinions of anyone who would care to chime in. I went to a gastroenterologist--for the first time in my life as I've never had digestive issues of any sort in the past--after two miserable weeks of unrelenting diarrhea that I mistakenly thought would go away on its own. He believed I got a virus from something I ate (though I had no other symptoms than the diarrhea--no vomiting, no fever, no aches and pains) followed by Post-Infectious IBS, but he ordered a colonoscopy anyway because both my mother and my older brother had polyps removed before age 50 (I'm 39). In the meantime, all the stool tests came back negative, but the diarrhea continued. The colonoscopy was also normal.

Several days after the colonoscopy, I got a call from the physician's assistant saying my biopsies showed intraepithelial lymphocytosis, which "suggests Microscopic Colitis but is unlikely in your case" given my age and general good health. She asked if I relied heavily on NSAID drugs. No. Was I recently or currently taking any prescription medications? No. Have I had trouble with gluten in the past? Not to my knowledge. So she said she would call in a prescription for Entocort and that I should follow up with the GI in two weeks. End of conversation. I didn't ask questions because at the time, I didn't know a fraction of what I know now about MC, Celiac Disease, gluten sensitivity and the rest of it. I basically haven't stopped researching since I got the call, and that's what brought me to this forum.

I didn't get the prescription filled--there's no way I was going to start taking a steroid medication, even a relatively "gentle" one for a disease that didn't even come with a firm diagnosis, especially if there was even a possibility I could eventually control it through my diet. This is not to say I judge anyone for taking it, not at all. If I'd had the same severity of symptoms that members of this forum have had, I would've started on the Entocort immediately and then started working on the diet. Incidentally, the GI didn't even mention testing for Celiac, but I'm not sure it matters; based on everything I'm reading, the net result of Celiac and gluten sensitivity is the same--no more gluten.

So this is all very new to me, but I'm learning as much as I can as quickly as I can. My symptoms have improved since everything started about nine weeks ago. I've only been gluten free for two weeks and dairy free for one, and I started the Pepto treatment just six days ago. So far, I'm tolerating the Pepto, but I'd be lying if I said I wasn't going through daily life with a general feeling of uncomfortable, bloated unwellness, and I'll taper off it should I become constipated. The diarrhea is now down to twice a day, and it's not nearly as violent or watery as it was, so I consider myself lucky. It had been five or six times a day for six weeks or so, with a few days of 10-12 times a day, and I realize it could've been much worse. Whenever and whatever I eat, however, I do still get the very loud gurgling sounds and a feeling of fullness that's disproportionate to the amount of food I've eaten. I've lost a few pounds but nothing significant.

A couple questions:

1. Until now, I never thought I had any real food intolerances. When I read that gluten sensitive also frequently means dairy sensitive, and that colonic inflammation ALWAYS means dairy sensitive, I tested myself because I don't eat much dairy to begin with. To put it mildly, my little test proved unequivocally that I'm dairy sensitive--no need for further testing on that one! So now gluten and dairy are both gone, and I do mean gone. I realize it's an all-or-nothing proposition with these things. My question: For those of you who got the EnteroLab testing, did you do it from the get-go? Wait until your symptoms improved? I'm just wondering if I need it right away--or at all--when the Pepto treatment and a strict gluten-free, dairy-free diet might resolve things in time. If you do recommend getting the tests, which panels do you recommend and why?

2. Do I NEED to go back to the GI and get tested for Celiac? If I'm going to strictly avoid gluten anyway, which I am, and the small intestine biopsy may not even show any damage to the villi...should I even bother with the endoscopy? The only thing that gives me pause is that my paternal grandmother had lupus, my 43-year old brother has Rheumatoid Arthritis as of about a year ago (for which he is taking Prednisone but hasn't altered his diet as far as I know), and my late father may have been walking around with undiagnosed Celiac based on everything I've just learned about it. So, autoimmune disease does run in the family (though I'm the only non-smoker of the bunch, if that helps my case). Might this be significant in some way? The diarrhea is really the only "classic" Celiac symptom I've had--no joint pain, no brain fog, no major weight loss, etc., and most of all, no sudden negative reactions to gluten in recent memory, unlike my dairy test. Is it possible that I DID just have a virus that triggered the inflammation and that I now have "Post-Infectious IBS" as the GI originally speculated? Or maybe I do have MC, but it isn't severe enough for the GI to firmly diagnose it as such? I don't know what the diagnostic criteria are for MC beyond chronic watery, non-bloody diarrhea and the presence of inflammation in the colon at a microscopic level, because if those are the only criteria, then I don't understand why the GI wouldn't have diagnosed me with it. Furthermore, if MC is "unlikely" in my case, why would he go straight for the Entocort?

Thanks so much for taking the time to read this and for any thoughts you might have on any aspect of my situation. I know many of you have suffered tremendously, and I'm grateful for whatever insights or wisdom you care to share. I've found the most useful and sense-making information on the internet through this forum, but I'm just unsure what my next step should be.

[Leah]

Welcome Fiona. Your symtoms and case sounds a lot like mine. I had no food intolerances that I knew of until this happened. I wasn't taking any drugs that could have spurred this on either.

When our MC is triggered, so are other food intolerances. I wouldn't bother with a celiac test if I were you. if you don't register enough villi damage, it will be negative. Most of us here have non-celiac gluten intolerance anyway.

i did take the drug because I am a personal trainer/nutrition specialist and just couldn't do my job unless I got the D under control pronto. It worked great, but I also changed my diet at the same time so that the intestines could heal. NO gluten, dairy, soy, acid foods ( tomatoes), fiber ( beans), Nitrates and nitrites, or RAW FRUITS AND VEGGIES. Also, low sugar. I was able to add some of these back in after 6 months with no more drugs. i am still GF, SF, DF though. Some people have problems with eggs. Some have even more intolerances to other grains and meats. That's why the Enterolab tests are good. I couldn't use them because of IgA deficiency, so I had to do it the old fashioned way. Eat real food and stay away from most processed foods with lots of ingredients.

If the Pepto works for you, great. It made me kind of sick. that's why I opted for the Entocort.The Pepto protocol is a 2 month thing that starts with 8 chewables a day ( or less) and then you slowly wean down until you are off of it. the thing is that you must change your diet AT THE SAME TIME you are taking the drug, other wise you are most likely to relapse when you stop using it. Think of this period of time as your healing time.

I can't tell you if you actually have MC or not, but it certainly sounds like it. your age doesn't matter. We have people on here who are in their 20s and there was a 2 year old child who's mom was on here for a while. I don't know what your doctor is thinking. He/she probably doesn't have a lot of experience with this disease. Many don't.

You are off to a great start.
Ask anything and keep us posted
Leah

[Gabes-Apg]

Hi there.....

Whether you call it ibs, ibd, crohns, mc. The symptoms you are having are inflammation in your gut, all of what is discussed on this forum applies to any digestion issue.

Remove intolerances from your diet and lifestyle.
Find the eating plan that works for you..
And you can be symptom free

Listen to your body.... It can tell far more than most tests.

Good luck digesting (pun intended) all the good valuable information on this site.

Take care

[tex]

Hi Fiona,

Welcome to our internet family. with Leah and Gabes. Your doctor's working knowledge of this disease is waaaaaaaaaayyyyyyy out of date. She actually questions the pathology findings simply because she doesn't believe that you are old enough to have the disease. IMO, that's just plain dumb, in view of the statistics on this disease, but then again, I'm sure that the only statistics on this disease that she is familiar with are also waaaaaaaaaayyyyyyy out of date.

I pity any patients half your age or younger who might come to her with similar symptoms. Doctors, of all people, should know better than to categorize patients based on age. Microscopic colitis doesn't give a hoot how old or how young any of us are.

Trust me, if you have lymphocytic infiltration (as the pathology report shows), you definitely have lymphocytic colitis, and you will have it for the rest of your life. That doesn't mean that you will have to deal with the symptoms for the rest of your life, obviously, because that's the reason for the existence of this discussion and support board — to help MC patients to get their life back, ASAP.

The EnteroLab tests can be ordered at any time, if you feel the need to verify whether or not you have additional food sensitivities that continue to elude you. I believe that if I were in your shoes I would order their gene test, to see whether you happen to have any celiac genes, or which particular combination of gluten-sensitive genes you have. Knowing your gene results can help to shed light on possible dietary issues/risks that other family members might be vulnerable to, especially your offspring, if you have any.

I'm virtually certain that I'm a celiac (I have the most common celiac gene), but my doctors never tested me for celiac disease, and after I adopted the GF diet, that quickly became a moot point, because I will never knowingly eat gluten again, anyway.

Again, welcome aboard, and please feel free to ask anything.

Tex (Wayne)

[Fiona]

Thanks Leah, Gabes and Tex for the quick and helpful responses. Much appreciated!

Leah: Yes, our cases do sound a lot alike. I have the luxury of working from home, so had I been in your shoes, I'd have started on the Entocort as well. So far, so good with the Pepto, but I'm only about a week into the eight tabs a day.

Gabes: Good advice. If there's anything positive about all this, it's that it's teaching me to pay close attention to my body and how it responds to everything I ingest. I very rarely get ill, so when this came along it was like being clubbed over the head with a reminder not to take my health for granted.

Tex: Before my colonoscopy, I'd never even heard of MC, so when I started researching and found there were people of all ages who have it, I too was befuddled by my GI's opinion. So whether or not I'm told I have it "officially," I'm treating my body like I do, and the steps I'm taking seem to helping so far. I will very likely order the Celiac gene test and will report on the results if I do. I mentioned in my original post that the diarrhea was the only "classic" symptom of CD that I exhibited, but it just occurred to me this morning...I was diagnosed with TMJ when I was a teenager and have lived with it to varying degrees of intensity for a very long time now. Is it correct to assume, given the word "joint" in temporomandibular joint dysfunction, that this could've been caused or at least aggravated by gluten sensitivity as well? And now that I've just typed that sentence, I'm thinking of course that's what it means, and what a dumb question!

Thanks again all for the info and the welcome.

Fiona

[tex]

I was diagnosed with TMJ when I was a teenager and have lived with it to varying degrees of intensity for a very long time now. Is it correct to assume, given the word "joint" in temporomandibular joint dysfunction, that this could've been caused or at least aggravated by gluten sensitivity as well?

No, that's not a dumb question, but it definitely suggests that you've been sensitive to gluten since very early in life. I had never heard of TMJ (let alone experienced it) until all my GI symptoms had been at the severe level for roughly a year or so. Some days I could only eat soup, because I couldn't open my mouth wide enough to eat anything else, and the spoon couldn't be very thick, either. I've never had the problem again, since adopting the diet. So I'm guessing that gluten sensitivity is the sole cause of TMJ, despite the fact that the medical community seems to be unable to determine the true cause (much like they're unable to determine the cause of so many diseases).

My mother had TMJ, (you could hear those jaw-popping noises across the room, and it always embarrassed her) and she had the GI issues to go with it, but it never occurred to her doctors to test her for celiac disease, and back in those days, I was totally ignorant about it also. I'm pretty sure that it's safe to conclude that anyone who shows any symptoms of TMJ should either be tested for celiac disease, or just assume that they have it and immediately adopt the diet.

Tex

[Fiona]

Thanks, Tex. Oh yes, TMJ is noisy and miserable. I've had so many doctors and dentists try to figure it out and have had every kind of bite splint/night guard/appliance imaginable, not to mention all manner of narcotic pain meds that never helped. One oral surgeon even wanted to break and reset my jaw. No thank you. It's better now, but it does come and go; there are definitely times when it flares up just like any other condition.

I have immediately adopted the GF diet (followed shortly thereafter by the DF diet) and have found gluten in lots of strange and surprising places already. The dairy is easier for me to let go of as I was pretty much Princess Pasta up until a couple weeks ago. I haven't drunk milk or eaten ice cream in years, but I do love cheese. Not anymore.

[Leah]

There are some pretty decent rice and corn pastas out there ( if you can still find a sauce that you can eat)

Leah

[Zizzle]

Hi Fiona,
Are your joints bendy by chance? Are you very flexible? I have benign joint hypermibility syndrome, which often results in TMJ. I was headed for TMJ as a kid, but orthodontics changed my jaw alingment. Many people with joint hypermobility seem to end up with digestive, gluten and autoimmune issues. I think the genes for both are on chromosome 6, and the weak collagen doesn't protect our gut enough.

I ordered Enterolab tests afyer my GI doc refused to test me for Celiac, despite me having nearly all the classic symptoms. I'd had a negatuve blood test 5 years earlier, and she insisted that meant I would never get it.
So I went to see Dr. Fasano, the famous celiac expert, and he said he would not suggest a gluten challenge for me based on my symptoms. He said in response to my LC diagnosis:"we once thought celiac was confined to the small intestine, now we know otherwise." Knowing you have a celiac gene will help you mentally accept that you can't allow any cross-contamination, as there are more than just digective consequences. My HLADQ2 celiac gene is also known as the autoimmunity gene. Fun.

[Fiona]

I can't say that I'm especially flexible, no. But the whole TMJ-Celiac connection fascinates me, and I ordered the EnteroLab Celiac gene test today, so we'll see what comes up. Although I considered it, I didn't order the entire panel B because my body is clearly telling me I'm sensitive to gluten and dairy, and I suspect it's the same for soy. If my symptoms don't resolve after a couple months of GF, DF, SF, then I'll consider additional testing. My 44 year-old brother has Rheumatoid Arthritis, and if I find out that I do have the Celiac gene, I will definitely share this info with him and try to get him to give up gluten. At this point, he hasn't changed his diet at all despite living with RA for over a year now and taking Prednisone.

And I agree, even though I'm already eliminating gluten to the same extent as someone with Celiac Disease should, I'd still like to know if I actually have the gene so I know how vigilant I need to be about cross contamination in restaurants, etc.

Thanks for your note!

Fiona

[tex]

Fiona,

FYI, I also have the DQ2 gene. Roughly 13 or 14 years ago, about the time all my GI symptoms began to show up, I developed severe arthritis symptoms in my knees, my left elbow, and several fingers on my right hand. My lower back and my neck were sometimes so stiff and sore that I had trouble sleeping, and trouble working, of course. I often had to use a cane for walking. After my gut healed from the diet changes, all those symptoms went away, and I threw the cane away and have never needed it since.

I still have the crooked, twisted fingers to prove how bad it once was (because that damage cannot be reversed, obviously), but arthritis is no longer a problem for me. These days, if I should slip up, and traces of gluten somehow sneak into my diet, my back and neck will promptly let me know that something is very wrong with my diet.

Tex

[Fiona]

Wow, Tex. If I have a fraction of the healing that you experienced from changing your diet, I'll consider myself very lucky. With everything I've learned over the past couple weeks, I'm really wondering if my father, who died at age 66, might have had CD. He exhibited all the classic symptoms EXCEPT for the digestive issues. He was a 2.5 pack a day smoker and had emphysema for the last few years of his life, so his doctors--not illogically--blamed the fact that he was wasting away on that. He had severe joint pain, especially in his shoulders, for many years, was always very thin despite a huge appetite, and had extreme mood swings. Over time, he essentially wasted away before our eyes. I never believed his emphysema was advanced enough to cause muscle wasting, but that was the official explanation. He ate a lot of junk all day, every day, yet he was 5'9" and weighed about 130 lbs. He died weighing 88 lbs. Like me, he had allergies, childhood asthma and super-sensitive skin but never, ever got a cold or the flu and prided himself on this fact. And I can tell you he had a hard, stressful life, so whatever it was that actually took his life, I'm sure stress was a factor. Surprisingly given the cigarettes, he never developed lung cancer, but that may be simply because he didn't live long enough. After multiple blood transfusions, his bodily systems started shutting down one by one, and the official cause of death was congestive heart failure. His mother (long before I was born) died in her 50s from complications with the excessive amounts of cortisone she took for what I'm told was lupus.

Anyway, of course it's only speculation on my part. But between the above and my brother with his RA, my plan is to completely eliminate gluten from my life whether I have the Celiac genes or not.

Fiona

[Zizzle]

Fiona,
You might be interested to know that smoking is generally protective against autoimmune diseases. Many people report their first flares after quitting smoking. Not a good reason to smoke though!

[Fiona]

Really? The things I learn here! Is it that tobacco itself is somehow protective or that quitting smoking triggers a flareup? Meaning, is it that cigarettes are just suppressing the immune system or that the stress of of the change from smoking to not smoking sets off an autoimmune reaction? I wonder what happens to people who smoke, quit, trigger an autoimmune reaction, then start smoking again. But yes, definitely not a reason to smoke! My brother with the Rheumatoid Arthritis smokes (though not nearly as much as my father), and I don't smoke and never have. It's all very interesting.

[tex]

It will be interesting to see your DNA results. From your description, it sure sounds as though your father may have been sensitive to gluten, also. To expand on what Zizzle brought up, it's possible that your father's smoking may have prevented his GI issues from presenting. This is strictly my theory, not proven by random, double-blind medical research trials (or anything even close), but here is my logic:

While an association has never been conclusively proven for Crohn's disease, as Zizzle pointed out, it's a fact that stopping a long-time smoking habit is known to be a risk factor for the development of MC, and this board has quite a few members who can trace the origin of their MC back to when they stopped smoking. And in addition, medical research has clearly shown that smoking is protective of ulcerative colitis. In fact, not only does nicotine prevent the development of UC, but research trials show that UC patients can reliably achieve remission in a high percentage of cases, simply by wearing a transdermal nicotine patch. All of this is medical fact, published in prestigious, peer-reviewed medical journals.

And here's some more supporting evidence: Most GI docs probably don't even realize it, because they never think if it this way, but celiac disease is actually an inflammatory bowel disease. Strangely, no one ever classifies it as an IBD, but it truly is. Now the Mayo clinic published a research report a year or so ago showing that celiac disease is now approximately 4 times as common as it was roughly 50 years ago. But of course they have no idea why. Their research simply compared antibody levels in blood samples saved from WWII soldiers, with antibody levels in blood samples taken from current volunteers.

Now bear in mind that throughout WWII, all soldiers were supplied with free cigarettes, and they were actually encouraged to smoke, as a stress relief mechanism. So we know for a fact that most soldiers were smokers.

But soon after WWII, our government began requiring warning labels on cigarette advertising materials, that pointed out the risks of smoking, and then advertising on TV was banned, and as the movement grew, the disincentives escalated. Eventually the medical institutions joined the campaign, and so did municipalities all over the country.

So here's my theory that explains why the Mayo Clinic concluded that the prevalence of celiac disease has quadrupled during the last 50 years:

In view of the fact that celiac disease is a true IBD, I submit that the anti-smoking campaign promoted by our government, all our medical institutions, municipalities, etc., over the last 40 or 50 years or so, has effectively removed from the environment, the protection that nicotine once provided against the development of celiac disease, for a high percentage of the population. It's that simple. Am I wrong?

I'm not trying to revive smoking, or otherwise promote it — I'm just explaining why celiac disease is now 4 times as common as it was roughly 50 years ago. 50 years ago, smoking helped to prevent approximately 3/4 of the cases of adult-onset celiac disease from presenting. They remained in "latency", which means that the antibody levels never became high enough to be detected by the classic celiac blood tests.

I wonder what happens to people who smoke, quit, trigger an autoimmune reaction, then start smoking again.

To answer your question, we know that with ulcerative colitis for example, resuming smoking would usually bring remission. With MC however (unlike UC), it appears that once the cat is out of the bag, there's little point in trying to get it back in there. Resuming smoking doesn't appear to resolve the symptoms of MC.

That suggests to me that the stress that results from quitting smoking may be the key, rather than a protective effect (as far as MC is concerned).

Tex