Colonoscopy Results

[amberlink09]

Hey Everyone,

My doctor just called with my endoscopy/colonoscopy results and said that everything was pretty much normal. I had some inflammation in my stomach and ulceration in my esophagus, but the biopsies of the small intestine and colon were fine, so my doctor told me it's just IBS. He also told me it doesn't look like I have Celiac (even though I was already diagnosed before), but I don't think I believe him, I'll wait for the gene testing to determine that. He also pretty much told me I'm a hopeless cause, but we are going to try all of the same medicine that I've been on before and see if it works. His original suspicion was that I have MC, which is why I've been on this forum. I definitely didn't want to have it, but I also don't want to be labeled as hopeless. Also, can I still stick around these forums even though I don't have MC? You guys are such a big help!

[tex]

Amber,

You probably have Paucicellular lymphocytic colitis. Most GI docs and pathologists seem to be totally unaware of it. PLC presents with elevated lymphocyte counts, but the counts are below the threshold (20 lymphocytes per 100 enterocytes) for a classic LC diagnosis. Because of that diagnostic criteria glitch, virtually everyone with PLC slips through the cracks in the medical system, (similar to non-celiac gluten sensitivity).

The inflammation in your stomach is almost certainly due to lymphocytgic gastritis. IMO, it's a satellite issue of MC, but it's also strongly associated with celiac disease.

http://www.ncbi.nlm.nih.gov/pubmed/9989841

Hey, you don't have to have any diagnosed disease to be more than welcome on this site, as long as you at least sympathize with us. The point is, you certainly do have celiac disease, if you were once diagnosed with it (did your GI doc think that your small intestinal villus atrophy would never heal? — that would be a dumb assumption on his part, because young people heal relatively quickly), and you very likely have MC, based on your symptoms, but your doctor simply isn't capable of providing a reliable diagnosis, because either he or the pathologist isn't qualified to diagnose PLC, or he isn't willing to do any better than to go strictly by the book.

We're a family here, and that means you'll always be a family member.

Tex

[JFR]

Amber,

It is frustrating not to get a definitive diagnosis but that does not mean you are not sick, only that your doctor cant figure out what's wrong with you. I've just read a book about this very topic "Nameless Diseases" By Terra Ziporyn. It's a fairly old book, published in 1992, but still very current. One thing she says is "If doctors can't assign a disease name to your condition, it simply means that, given current evidence, they have been unable to fit your particular set of symptoms and signs into a known pattern. It does not mean that you are crazy, the doctors stupid, the discomfort minor or the consequences trivial". I think that sometimes it does mean that the doctor is stupid, but perhaps she is just kinder or more polite than I am. Luckily you can continue to pursue dietary changes without a doctor's blessing.

I do not have a diagnosis. I have a long history of so-called ibs. When my symptoms really worsened this year I found this forum and decided to simply go ahead with the dietary changes and Enterolab testing on my own. Past history had taught me that doctors were not going to be of much help to me so I decided not to undergo a colonoscopy or even see a doctor and do it on my own. So far it is working. I am certainly not 100% well but I can now leave the house which I couldn't do back in March when I found the forum. So far, no one has threatened to make me leave because I don't have an official diagnosis.

Jean

[amberlink09]

I wish you were my doctor Tex! You seem to know a lot more than them, or at least you are willing to do more research. I thought it was odd that my doctor didn't really explain the ulceration of my esophagus or the inflammation in my stomach, because even though we were expecting problems in my intestines, those still seem like things to worry about. He thinks I don't have Celiac because I never got better after I was diagnosed, so he had me eat gluten for 2 weeks before the biopsies thinking that if I do have Celiac then it would show damage to my intestines. I know now that wasn't a long enough period of time to really make a difference on the biopsy, maybe for a blood test, but we didn't do one of those. So, I'm waiting to see what enterolab says. I was also diagnosed by a Celiac specialist, so I think I believe him more.

Jean, I'm glad to hear you've found some help through changes in diet. I know what you mean by not being able to leave the house, yesterday was my first day of classes and my morning was pretty rough, which just made the news that my doctors couldn't really help me that much worse. I am getting some testing done with enterolab right now though, starting with the basic gluten, dairy, egg, and soy panel, and hopefully that will give me something to go on. If it doesn't, then hopefully I can get the panel that tests more of the foods. In the meantime I'll be trying all of the medication that my doctors want to give me, because even though I'm skeptical I will try anything at this point!

[tex]

He thinks I don't have Celiac because I never got better after I was diagnosed, so he had me eat gluten for 2 weeks before the biopsies thinking that if I do have Celiac then it would show damage to my intestines.

Well duh! When someone with celaic disease doesn't respond to treatment, the medical term for that is "refractive sprue". It's rather common, and it certainly doesn't imply that the disease doesn't exist just because the patient didn't respond to treatment. In your case, you probably didn't respond to treatment because of either LC or PLC dominating your symptoms.

And as you pointed out, there's no way that 2 weeks worth of gluten challenge will result in measurable damage in the small intestine — it takes at least a couple of months for reliable test results, and if you've been GF for years, it may take from 6 months to a year or more of gluten challenge to produce measurable changes in the histology of the small intestinal mucosa. That's why it takes an average of almost 10 years of symptoms before most patients receive a valid celiac diagnosis in this country.

I doubt that a two week gluten challenge would change any serology either. Serology will not be positive in most cases of celiac disease until a Marsh III level of damage is reached in the small intestine, and that's a lot of damage. It typically takes 3 to 6 months of gluten challenge to cause that level of small intestinal damage in the average celiac.

Your doctor reminds me of my GP. He recently suggested sending me to a GI specialist to rule out celiac disease. This was right after I had reminded him that I had been on a GF diet for 10 years. He obviously knows nothing about diagnosing celiac disease. Ignorance about celiac disease apparently still runs rampant in the mainstream medical community.

I hope your EnteroLab results will clarify some of your diet issues/questions.

Tex

[amberlink09]

That's what I thought, and there's no way I'm doing a six month gluten challenge, the two weeks were hard enough for me (though they were delicious!), and I think that says enough. He's actually the second GI to suggest that I don't actually have Celiac, and that the inflammation found in my small intestine for my first endoscopy was just IBS. It's amazing to me how little doctors know about Celiac, and my GI completely refuses to consider the idea of refractory sprue. I would like to find a better doctor, but it's really tough to find a decent GI.

[tex]

As I recall, when "IBS" was first "created", the primary distinction between IBDs and IBS was that IBS did not involve intestinal inflammation. Now, suddenly, IBS also involves inflammation. Well Doh! That's inflammatory bowel disease (by definition), so why do they call it "IBS". Talk about a disease of convenience that was created strictly for the benefit of GI docs and one that's subject to being changed at will, depending on which way the wind blows.

What I don't understand is why most GI specialists (and many other doctors) bend over backwards and go to various extremes to try to claim that even previously-diagnosed celiacs don't have celiac disease, and they use corrupt diagnostic practices to try to make their point. To me, that just proves that they are either incompetent, or they have a devious agenda. What on earth could their agenda possibly be?

Tex

[Polly]

Tex,

I still think a lot of the problem is that the info just isn't out there in the medical literature (in a coherent way, meaning double-blind/controlled studies) regarding non-celiac gluten sensitivity, the effects of diet, etc. Even the experts like Dr. Fasano do not have a full understanding of the issues involved, IMHO. Especially the fact that non-celiac gluten sensitivity is a bigger problem than celiac......for example, because of the likelihood of far more associated food sensitivities. And even once the info is in the medical literature, it takes YEARS for it to become standard practice. I don't really see any deviousness.......just ignorance.

Love,

Polly

[amberlink09]

Personally, I think it really has something to do with our food pyramid. Your whole life you are taught that wheat/gluten is one of the most important parts of your diet because it is the biggest part of the food pyramid, and a doctor's idea of a healthy diet includes a lot of whole grains. My parents are convinced that the reason I've gotten more sick since being diagnosed with Celiac because I don't eat gluten. I'm not really sure why doctors refuse to look for food intolerances in general when patients come in with digestive issues, but they seem to refuse to believe that food and digestion are related. Though, yesterday my doctor did recommend that I stop eating a lot of fruit and vegetables because they are too high in fiber... of course if I stop eating fruit and vegetables I'm only left with meat so that doesn't seem like a great option.

[tex]

Polly,

You're probably right on target with that observation, but part of the problem is that they should realize that the chances of someone doing a valid random, double-blind study that produces conclusive results about this issue, are slim to none, because of the complexity of the undertaking and the unlikely prospects of any entity providing funding for a study large enough to be of any value. Big Pharma is certainly not going to ante up.

Since such a study hasn't been done (and may never be done) it's audacious of them to assume that the lack of scientific proof equates to proof to the contrary. That's a common problem with GI specialists dealing with gluten-related issues, and in the case of neurologists, for example, they simply choose to just ignore all the research done by Dr. Hadjivassiliou and others, that shows that untreated gluten-sensitivity causes neurological problems. The fact that most neurologists continue to ignore solid research results, at least ten years after they were first published, is nothing short of exasperating (and irresponsible to boot, IMO).

Incidentally, I totally agree with you about Dr. Fasano's understanding of gluten sensitivity. It seems almost incredible that someone who is arguably the top (in terms of published works, at least, and probably in terms of salary and other compensation) celiac researcher in the world, could be so confused about certain facts related to the issue. His proposed "theory" of the origins of autoimmune disease are so inadequate that I just couldn't keep from critiquing the theory in the book (since it sharply contrasts with my own theory). I'm sure that I didn't endear myself to him, but he tends to ignore research claims and theories put forth by others, anyway, when it doesn't suit his own purposes (for example, he chooses to totally ignore the work of Dr. Fine), so he will surely never read the book.

His problem is that he apparently completely fails to recognize the involvement of mast cells in all intestinal inflammatory processes (he blames it on macrophages). His theory begins at the point where the development of autoimmune disease is already imminent (which is pretty much after-the-fact). My theory goes all the way back to the origins of the process, and the issues that eventually result in the predisposing conditions that he claims to be the cause of autoimmune disease.

Tex

[JFR]

Doctors tend to confuse medical knowledge with truth rather than best guesses and diseases with material objects rather than abstract concepts. Then there's the problem of ego. Many doctors have an overabundance of ego so convincing them of something different than what they believe can be exceptionally hard. That's true of most of us but seems an even greater problem for many doctors. I'm getting interested in the history and philosophy of medicine, especially what it means to have a "disease" and how the concept of disease and diseases has changed over time. For instance, why is it that medical practitioners privilege signs (test results) over symptoms? I'm just getting started but it is all really fascinating.

Jean

[Polly]

Tex,

Remember, the docs in practice are usually not the ones doing the research. Also, liability is a huge issue in medicine. Docs who recommend treatments other than what is currently accepted best practice risk major lawsuits. Unless you have studies to back up your course of treatment (no matter how outdated they may be) are treading on thin ice. How could a practicing doc possibly know what we know, when that info is not out there in the research or conference offerings?

Jean, interesting. Keep us posted on what you learn.

Love,

Polly

[tex]

Polly,

I definitely agree.

Love,
Tex

[tex]

Jean,

If you decide to write a book on that topic, I will definitely buy a copy.

Tex

[Zizzle]

I've been confused about the proposed definitions of non-celiac gluten sensntivity versus celiac. They all say non-celiac sensitivity does not involve any autoimmune process, so by that definition, does that mean all gluten- sensitive MCers have celiac, since MC is an autoimmune process?? I'm not a confirmed celiac, but autommunity of many types are at play in my condition. What am I?