Can MC present without the diarrhea but with other symptoms?

[Kristtene]

I was diagnosed with MC (colonoscopy) three and a half years ago. My symptoms were as follows:

-Sudden onset diarrhea, two to five times a day including nocturnal
-strange looking weakly-formed stools
-foul smelling as well
-mild low ab cramping that seemed related to the diarrhea forming

At the time, I had another type of symptom: joint aches that felt exactly like PMS. And I thought it WAS PMS because I was expecting my period. I don't recall which came first: the joint aches or the diarrhea. However, my history is that PMS joint aches disappear the day I begin flowing.

However, in this case, the "PMS" aches persisted throughout my period and continued AFTER my period was over. The diarrhea began several days before my period started, and it took about two months for the diarrhea to complete resolve and my BMs to return to normal, so it was transient MC.

I don't recall when the joint aches disappeared, but they were significant: ankles/back of ankles, low back, upper hamstrings, wrists, neck. I do not recall if pelvic cramping that felt like PMS was present.

In my research on MC, I've learned it can present with joint aches in a small percentage of cases.

MY QUESTION: Lately I've been having the SAME joint aches including low ab cramping (feels like PMS, but I completed menopause four months ago, so I know it's not PMS). I've found no information that a rheumatic condition can cause low abdominal cramp.

The cramp is part of the joint ache process--it's not independent of it, so whatever's causing the aches in the ankles, low back and wrists, is also causing the low ab cramp. I was thinking maybe this is a flareup of MC, but...no funny diarrhea. I've had typical looking diarrhea like three or four times over the past 19 days; the joint aches began 19 days ago, and this frequency of diarrhea is my normal.

Could I still have a flareup (low grade) of MC?

[tex]

Hi Kristtene,

Welcome to our internet family. To answer the question in your subject line: Definitely. MC can (and often does) present without any GI issues. The arthritis-like symptoms are actually due to the effects of untreated gluten sensitivity (gluten sensitivity is almost universally associated with MC). Gluten sensitivity can even present as only neurological issues, totally devoid of any GI clinical symptoms.

In my research on MC, I've learned it can present with joint aches in a small percentage of cases.

Actually arthritis-like symptoms are very commonly associated with MC. I'd venture a guess that more than half of the membership here has experienced that symptom as part of their MC reaction spectrum. In my case, it was so bad that I had fingers growing crooked, and I had to use a cane just to get around on "bad" days. After changing my diet, the problem slowly faded away, and I threw the cane away. That was about 10 years ago. Today, I have no joint problems, even though I'm older now.

If gluten is still a part of your diet, the probability is about 99.99 % that it is the cause of your joint pain. But be aware that in order to eliminate the symptom, we have to absolutely avoid all traces of gluten in our diet. Anything less than 100 % avoidance will bring disappointing results.

The bottom line is that gluten (and for some of us, other inflammatory foods as well) causes inflammation in our intestines, and just as with Crohn's disease, this inflammation can affect many other parts of the body. But the primary place where the extended inflammation usually presents, is in the joints, where it results in arthritis-like symptoms.

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

Tex

[carolm]

Hi Kristtene,

I never really had chronic diarrhea with my LC. When flaring I had cramping, pencil stools, and nausea so intense that it would literally keep me bed bound and afraid to move. I believe my inflammation was as much upper GI as lower. Later as I was healing, I did deal with lower GI motility issues-- basically out of sync, aggressive motility.

I'm sure others with more knowledge will chime in, but I find that I have inflammation in different ways depending on the food.

For example, Once I had LC if I ate peanuts or peanut butter I will ache all over the next day, every joint. if I (accidentally) get gluten I'll have a severe headache for 4 days, and cramping, pencil stools, nausea, etc for the first 24 hours. If I accidentally get soy, within 2-3 hours I'll be nauseated and gurgling. I did a food challenge with spinach and the result was watery D, but no dizziness, cramps, or other symptoms. But that's been my experience-- the inflammation is triggered, but where I feel it varies depending on the foods. The bottom line is that it's all inflammation and something to be avoided if we want to heal.

Are you gluten-free, dairy free or soy free?

Carol

[Leah]

Welcome Kristenne.
Tex said exactly what I was going to ( but he always says it better). He is definitely an expert and has written a book on Microscopic Colitis. It's in the upper right hand corner of this page. If you'd like to buy it, just click on the picture to get you directly to Amazon. It is a great resource.

Nobody on this forum has gotten better without eliminating gluten. ( i don't think) and many of us have multiple food intolerances. If you are still having D, then you really need to examine your diet. Fiber ( raw fruits and veggies) will also most likely keep you on the roller coaster you are on.

Again , welcome and ask as many questions as you have. We are all here to help

Leah

[Kristtene]

Thanks for the responses, and I hope they keep coming in, as a strong differential is psoriatic arthritis (my brother has it), as well as enteropathic arthropathy -- which the online medical sites don't mention MC but are quick to mention IBS, Crohn's and ulceritis.

I had a celiac blood test this past June and it was normal.

However, I will be trying the Paleo diet (no gluten or other processed foods), it looks like, very soon, to see if that changes anything.

I'm not having any more diarrhea than I normally do (occasional), and my stools look quite normal (what's normal for me). My MC stools looked really weird when I had the onset three and a half years ago, so I'll immediately recognize it if MC starts affecting my stools. My MC diarrhea was different than normal diarrhea. The diarrhea I've had several times in past few weeks is normal looking and corresponds to high fiber intake.

I foresee in very near future a visit with a rheumatologist after seeing GP, and I highly doubt my GP will know much about MC.

[Leah]

Just so you know, the blood test that is given for Celiac is a very flawed test. It only picks up on Celiac disease if there is already substantial intestinal damage ( villi thinning). Most of us here test negative, but definitely have NON-CELIAC GLUTEN SENSITIVITY.

Also remember that when you do go gluten free, it can take up to four months to see significant improvement…. especially for joint pain.
Good luck
Leah

[tex]

I had a celiac blood test this past June and it was normal.

Leah, is quite correct. To add a few details to what she pointed out: Despite what most doctors believe (unless they happen to be one of the handful of doctors who have actually done their homework on this issue), that test is worthless for at least 95 % of celiacs, and it is 100 % unreliable for everyone who has non-celiac gluten sensitivity (which as Leah pointed out, is most of us who have MC). The poor sensitivity of that test (and doctors' misguided faith in it) is the primary reason why less than 5 % of celiacs are ever diagnosed. Ever!

And doctors currently still have absolutely no test that they can use to reliably diagnose non-celiac gluten sensitivity. The only test that will detect it is offered by EnteroLab, in Dallas, TX, and most doctors refuse to use it, because of the fact that the lab offers tests directly to patients, over the internet, and most doctors have a holier-than-thou attitude against such labs that offer tests direct to patients, and therefore outside of their (the doctors) full control.

Because of the poor sensitivity of the blood tests, for the few celiacs who are eventually diagnosed with celiac disease, the average time between first symptoms and an official diagnosis of celiac disease in this country is 9.7 years (according to the most recent data, from 2011). That's absolutely unacceptable, but the doctors don't seem to be in any hurry to develop a screening test that would be more reliable. Here's a research reference on that, if you want to see the verification.

Delay to celiac disease diagnosis and its implications for health-related quality of life

I'm not saying that you have gluten sensitivity (though it's extremely likely), I'm just pointing out that the test you had is virtually worthless, from a medical standpoint, since it is only capable of diagnosing a fraction of the patients who have fully-developed celiac disease, (the test is capable of slightly over 70 % reliability on patients who have already accrued major damage to their small intestine — at least a Marsh 3 level of damage). Anyone who has not yet reach this level of major intestinal damage, will always receive a negative result from that test. And here's a reference on that:

Seronegative celiac disease: increased prevalence with lesser degrees of villous atrophy.

Here's a quote from that research article:

Serologic tests, in clinical practice, lack the sensitivity reported in the literature.

When you go to see a rheumatologist, she or he will check your rheumatoid factor (among other things). Note that for most of us who have arthritis-type pains associated with MC, that test result will be negative (because it's not RA — it's MC-induced arthritis).

Good luck, and please keep us updated on your progress, because we learn from each others' experiences, here.

Tex

[carolm]

Kristtene, Enterolab has a simple cheek swab test to determine if you have gene markers for gluten sensitivity. If your brother is having auto-immune issues too this could be important information for you to have and to share. Like Tex and Leah, I urge you to go gluten free and I believe you will see a difference.

For my own experience, I was stunned to see I have 2 gene markers for gluten sensitivity. I expected one from my dad since he had allergies, arthritis and fibromyalgia. I didn't expect to get one from my mom--- but I sure got slammed with LC. Since both of my brothers are now having arthritis I've talked to them about going gluten free too-- because they have the same genetics I do. I've also talked to my daughter about going gluten free to stave off the development of auto-immune diseases. So we've gotten some mileage out of that simple cheek swab test.

take care,
Carol

[Kristtene]

Actually, I DO have both genes for celiac (I don't recall if I have the gene--if it's even been discovered--for gluten sensitivity). How do I know? Not long after dx in 2010, I mailed Enterolab a stool sample. The sample had elevated antigliadins. So though my blood test since then has always been negative, I've always wondered... if I have celiac in progress (even though all along, till 19 days ago, I didn't have symptoms. I'm aware that in most celiacs, there are NO symptoms.

I will go gluten free to see what happens, but starting before Thanksgiving or even Christmas may be difficult.

[Jonas]

Hi Kristtene,

I was diagnosed with MC a year ago, and have had celiac disease since 2003. The last year I've gotten more and more pain in my joints and muscle attachment. I do not have diarrhea and almost never have. I'am GF,DF,SF so I don't think that it must be gluten the providing arthritis similar symptoms. Atleast not for me.
I have just met a rematulog and he do not think I have any classical arthritis, psoriatic arthritis or rheumatism.
But it's pretty clear to me that something is wrong with me. I have severe pain in the hip, pain in back, shoulder and ankle. And it all started after I got MC.
Since I get so vague symptoms (maybe a little stomach pain, stools that looks a little strange) when I eat something I can't tolerate it is almost impossible for me to know what I can and do not tolerate. I sometimes feel like stress has a bigger impact than food on my symptoms.
I will therefore make both Enterolab and LEAP MRT test now to see if I can get a clue on what else I do not tolerate.

/Jonas

[tex]

Kristtene,

If you have 2 copies of a celiac gene, that dramatically increases your odds of developing the disease. If the EnteroLab test result showed that you are already producing antibodies to gluten, then yes, it is virtually a 100 % certainty that you are in the process of developing celiac disease.

I believe you've made a wise decision to change your diet, but I have to agree that this is by far the most difficult time of the year to make that lifestyle change. Please be aware that once you make the change, there's no going back, because once your immune system gets a break from the constant hassle of dealing with gluten on a daily basis, that typically breaks any tolerance that you may have built up for gluten over the years, so that if you were to start eating gluten again, your immune system would respond more vigorously than ever, and your resulting symptoms would be more severe than ever.

I certainly don't want to be perceived as being in the position of trying to talk you into waiting until after the holidays to change your diet, but I feel obligated to mention this consideration, in case it might matter. Only you can decide what is best for you, and/or what is the most practical plan for your personal situation.

Making a lifestyle change of this magnitude is never easy, regardless of the season. It requires hard work, dedication, perseverance, and extreme attention to detail. But the payoff is that we can get our life back, and live symptom-free, usually without any need for any medications. Whatever you decide to do, we are here to cheer you on, and to share in your successes and/or to help with any problems that might arise during your journey back to health.

Tex

[tex]

I will therefore make both Enterolab and LEAP MRT test now to see if I can get a clue on what else I do not tolerate.

Obviously, something is causing your symptoms, so I agree that utilizing those tests to rule out or track down any additional food problems is an excellent plan.

Please let us know what you learn from the test results.

Tex

[Kristtene]

I just looked up my Enterolab results (copy and pasted below) of June 2010. I have one copy of the celiac gene and one copy of the non-celiac gluten sensitivity gene. Am I correct to assume that the reason Enterolab doesn't just come right out and state, "You have celiac disease," is because the FDA might come after them?

Just what do these results mean, other than what Enterolab recommends (also copy and pasted)? ARE these values celiac disease? Borderline? Full blown? See below:

Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value
Fecal Anti-gliadin IgA 121 Units (Normal Range is less than 10 Units)

Fecal Anti-tissue Transglutaminase IgA 43 Units (Normal Range is less than 10 Units)

Interpretation of Fecal Anti-gliadin IgA: Intestinal antigliadin IgA antibody was elevated, indicating that you have active dietary gluten sensitivity. For optimal health, resolution of symptoms (if you have them), and prevention of small intestinal damage and malnutrition, osteoporosis, and damage to other tissues (like nerves, brain, joints, muscles, thyroid, pancreas, other glands, skin, liver, spleen, among others), it is recommended that you follow a strict and permanent gluten free diet. As gluten sensitivity is a genetic syndrome, you may want to have your relatives screened as well.

Interpretation of Fecal Anti-tissue Transglutaminase IgA: You have an autoimmune reaction to the human enzyme tissue transglutaminase, secondary to dietary gluten sensitivity.

[tex]

Am I correct to assume that the reason Enterolab doesn't just come right out and state, "You have celiac disease," is because the FDA might come after them?

The FDA has no regulatory control over doctors — they only have jurisdiction over processed food and pharmaceuticals. The regulatory authority in this case would be the Texas State Board of Medical Examiners, and that board might possibly pull Dr. Fine's license if he started making diagnoses based on these test results alone (depending, of course, on their own views of how celiac disease should be diagnosed). However, if you had also ordered a fecal fat malabsorption test, and the result had been positive (over 300), then a diagnosis would have been legitimate, because the fecal fat test would verify the existence of major small intestinal damage.

IOW, the "gold standard" for an "official" diagnosis of celiac disease requires not only the existence of antibodies to gluten and/or anti-tissue transglutaminase, but proof of extensive small intestinal damage (at least a Marsh 3 level of damage). That said, due to growing recognition of the inadequacy of the diagnostic criteria, some doctors are beginning to diagnose celiac disease without confirming both those diagnostic markers, and a few will diagnose celiac disease based on a positive response (resolution of symptoms) to a GF diet. I've even heard of a very few who are willing to diagnose celiac disease simply on the basis of the existence of a celiac gene (that's still rare, though).

Your test results are relatively high, leaving no doubt that you are not only sensitive to gluten, but that it is causing an autoimmune type reaction in the mucosal tissues of your intestines. Antibody levels tend to increase with time (in the absence of diet changes), so if you were to do that test today, your levels would almost surely be much higher, especially the anti-gliadin test result.

Tex

[Leah]

I KNOW IT SEEMS DAUNTING TO CHANGE YOUR EATING HABITS DURING THIS TIME OF YEAR, BUT IT'S NOT AS DIFFICULT AS IT SEEMS. FOR THANKSGIVING, I AM CHOOSING TO NOT MAKE A BIG DEAL ABOUT THE STUFFING AND AM NOT GOING TO EAT IT, BUT IT CAN BE MADE WITH GLUTEN FREE BREAD CUBES. WE THICKEN THE GRAVY WITH CORNSTARCH INSTEAD OF FLOUR. I'M MAKING TWO PIES ( APPLE AND PUMPKIN) WITH GF PIE DOUGH. I DID THIS LAST YEAR AND EVERYONE LOVED IT. I EVEN MADE THE PUMPKIN PIE DAIRY FREE BY SUBSTITUTING ALMOND MILK FOR CONDENSED MILK. THERE ARE TONS OF RECIPES ON THE INTERNET. ONCE YOU GET USE TO THIS TYPE OF COOKING, IT REALLY SEEMS LIKE NO BIG DEAL. …… IT'S ALL THE OTHER INTOLERANCES THAT MAKE THINGS REALLY DIFFICULT SOMETIMES.

WITH YOUR ENTEROLAB RESULTS, I AM SURPRISED THAT YOUR SYMPTOMS AREN'T WORSE.
WELL, THE GOOD NEWS IS THAT YOU CAN TURN THINGS AROUND BEFORE THEY DO :)

LEAH