Please help-6 Months of illness, getting worse, now Mucus in Stool

I just turned 31 in February.  Around that time, I started to feel sore in my abdominal area.  I had impotency issues, and I was feeling fatigued.  I thought maybe it was an infection in my prostate but wasn't sure.  In May/June, I began having frequent bowel movements - up to 21 per day and averaging 16.  The least I have had a bowel movement in a single day is 8 times, and that if I simply can't get to a restroom.  Food didn't seem to get processed efficiently, either.  I was checked for bacterial issues via stool samples and blood samples - "skewed flora" and elevated Creatine levels in my kidneys were the only thing indicated by my first blood test/stool sample.  No blood was present in the stool.

I had a prostate check, also, at that time.  The prostate was inflamed from what we could tell (SEVERE pain during the check).  I was placed on 28 days of antibiotics for a perceived prostate infection.  To combat the antibiotics, I was told to and took Probiotics for 30 days.  Still, the stools were still loose and impotence continued.  I tried to eat better, exercise more, reduce stress and sleep more.  Nothing worked.

I went to a gastroenterology specialist and had a colonoscopy.  Everything checked out as normal/excellent/no issues noted, also with a check of the walls-negative.  I did a barium test-negative.  I had another blood test checking for any infection-negative, thyroid-negative, celiacs-negative.

After all that testing, my gastroenterologist gave me a prescription for Dicyclomine 10mg and sent me on my way with a diagnosis of Irritable Bowel...which I am learning is a nice way of saying, "I have no idea why you feel like you have to use the bathroom all of the time."  I have had stomach acid issues in the past, but I haven't had them for about a year.  My initial thought was that I had formed a hernia in my stomach, but they said no...even though we have never done the pill camera or scope...?

Since that time, I have noticed more and more mucus build up in my stool.  I have started to have more severe pain around my stomach and small intestinal areas - I can barely touch my own stomach, and I can't wear anything remotely tight around my waist.  I don't have a clue what to do next, but if everything was negative, what could they possibly check for now?  ANY ideas from a doctor would be appreciated...I can't take it anymore...it's absolutely unbearable some days.  Logic would say that something like this should never show up at 31 years of age.  Thank you.

[Caryopteris]

I'm not a doctor, but I have Celiac disease and food intolerances.  I would stop dairy, especially milk.  If you took the probiotic while on antibiotics, it would not have helped you as the antibiotic would have killed the good bacteria.  You can try taking that and Metamucil to see if that will slow down your digestion.  Try the pills and experiment with how much water you drink.  You might want to try a whole food supplement that is allergen free such as Akea supplement.  I'm sure there are other brands, but I have read up on that one, and it is the kind that is free of synthetics and it is organic.  You can't be absorbing nutrition well.  Oh, and also take glutamate.  It is the most important supplement for the digestive tract per somebody at Harmony Farms that I trust.  

[mk777]

Thank you, Caryopteris, for the response!  I'll look into the information.

[CalGal]

Mk, is there a history of any GI issues in your family? Do you have any rashes, brain-fog, unexplained fatigue or other symptoms you haven't mentioned? Have you tried any exclusion diets? Do you find any foods make things better or worse?

What parameter, specifically, did the blood test for celiac look for? And what were the specific number or numbers that were found? It could be important. Many times docs will use 'just' the test for tranglutaminase and it's not nearly enough in many cases. There are several parameters that need to be looked at - I don't care WHAT the standards are these days. Docs often miss a celiac diagnosis or a gluten sensitive diagnosis and it can be MISERABLE for the individual who has to live with the results for years before it finally gets so darned bad that it can't be overlooked.

[mk777]

My father has had stomach acid issues, but it was resolved years ago with stomach medications - Protonix, etc.  I used to also take them until about 2 years ago when I started having diarrhea frequently.  I quit taking them for a short period of time and didn't really need them.  I had taken them for over 10 years, as it was pretty bad no matter what I ate.  I haven't had the need for them since, as I haven't had any flare-ups.  Not really sure what happened, but it just quit being an issue.  I discussed it with my doctor, and he agreed to have me stop and monitor it.

I do not get rashes or brain-fog.  I don't have any unexplained fatigue, that I'm aware of...I'm relatively active (work out 6 days a week before all of this and still try)...when I get tired, it is usually from being very active - pretty intense workouts, sometimes.  Honestly, it's usually the opposite...struggle to slow down to sleep.

I looked for specific numbers, and there aren't any on the report for the Celiac test, but you are right that they sent the blood work to a lab in Washington to have it checked for tranglutaminase.

I have decided to try to eat gluten free for the next two weeks to see if that changes anything.  I started yesterday by getting two weeks of food.  It really doesn't taste all that bad, and I'm not a person that really cared for too much bread anyway.

My question for you is...if this works and it's a gluten thing, why would it just show up at age 31???  I mean, I guess it is possible I have lived with it and/or ignored it for years, but I'm not sure...I guess I usually don't complain much.

[CalGal]

Yes, it can and does suddenly seem to show up. For some, there's a subtle onset of problems. It can be so slow that the body and mind doesn't realize a lot is wrong and compensation allows that person to continue until the symptoms are so miserable they can't be overlooked.

Gluten issues fall under a large umbrella that is now being called 'gluten sensitivity.' Within that group there is both celiac disease and another branch (or branches) that is more typically understood to be something like non-celiac gluten sensitivity. Genes are purported associated with both issues (see info at enterolab.com or search pubmed.com for info).

Most docs are taught (I believe) that celiac disease is typically found at birth, but it now seems there may be another 'form or forms.' Something called 'silent celiac' is now recognized - it develops when one is older. The reason why is not known.

There's also the emerging for of non-celiac gluten sensitivity. It's suggested to act as an 'allergy,' but the symptoms for many are far worse than a typical allergy is suggested to be.

There's a decent overview on medscape.com if you search under 'gluten sensitivity' and look for articles published in Feb. 2012.

Nothing is really clear yet on the 'why and how' of gluten issues. But if that's your problem, forget about the why and how. Concentrate on taking all wheat, rye and barley out of your diet. Two weeks will give you a general indication of 'maybe it's possible.' It won't be definitive. Look for small indications.

Transglutaminase can be a lousy marker to gluten issues. We see that all the time in the medical setting I am in, and I saw it first-hand with my husband. There should be a series of tests run if blood is being used. Total levels of IgA, transglutaminase, IgA-gliadin and IgG-gliadin. I know a lot of docs would scoff at that list, and they'd probably laugh a lot louder at my next suggestion - using a fecal IgA-gliadin stool test to double-check is everything seems to be negative 'just to be sure and double-check.' I don't know how many times I've heard a GI person say the fecal antibody test isn't valid. But in my opinion, and from the results I've seen in quite a number of people, that small 'invalid test' has saved a LOT of people from a lot of pain.

In addition, if the total IgA levels are on the low side -even if they still fall within the 'normal' range (!), get that stool test done. Again, and again, and again we've seen when the total IgA is low and there are symptoms suggestive of gluten issues, the stool test is going to indicate problems with gluten. If the diet is changed, we'll ask the person to do the gene test (a cheek swab), and you'd be surprised at how many people carry either the celiac gene(s) or genes for gluten 'intolerance.'

Sorry to go on and on, but this is a subject that really touches a nerve. I saw my husband go through this and watched docs say 'it was all in his head.' It wasn't. It's a subject 'near and dear' to my heart.

[mk777]

I'll keep you posted on how it goes with the diet changes.  Oddly enough, my stomach doesn't hurt as badly today...could be psychological, but I felt well enough to work out for the first time in several days, and my appetite is strong today.  The gluten free foods are actually quite tasty!

I also noted that by now I have used the restroom at least half a dozen times or more.  I have only gone 4 times, and the stool has some forming to it instead of mostly watery.  Time will tell, but thank you very much for the information, and like I said, I will keep you posted!  I will also check out those articles you mentioned.

Thank you...very glad I posted here...at least have some hope now that I know I'm not entirely alone.  Also nice to know that it isn't all in my head.

[mk777]

Update: I have been gluten free for nearly one week.

I have eaten only certified gluten free food, and I feel AWESOME.

I have lost 10 lbs already in ONE WEEK.  I am working out without feeling exhausted, and honestly, I find myself working out then going outside to work on the yard just to stay busy and burn off my excess energy.  I feel like I'm 18 again, haha.  I have been eating like a horse, and I can feel my strength coming back.  My stomach no longer hurts.  I'm a little tender around my lower abdomen, but it is gradually going away, and I have had two bowel movements per day for the last 3 days!!  That's about as normal as it has ever been.

I can't believe it.  I'm going to keep this up for at least one more week just to make sure.  And, since I have suffered from anxiety/depression/OCD for so long, I'm going to look into the connection between gluten and mental health issues.  I've already talked to my doctor about options, and if everything seems to continue to work out, I will keep up the gluten free diet.

My sister has looked into her issues, also.  She may try to stay gluten free to see what happens, as she has had some issues similar to me in the recent past.

Thanks so much, again, for your information.  I'll keep the updates coming!!

[CalGal]

Mk777, I'm so glad to hear you're doing better. Remember, wheat, rye and barley...........and read labels.

So yourself a favor. Go to enterolab.com and order the gene test (cheek swab) test. Check which genes you're carrying. If they're the gluten sensitivity genes it will mean 'one' thing. But if you're carrying the celiac genes you're going to need to be a heck of a lot more cautious. And if you do have celiac genes, get checked for cross-reactivity to casein, the major protein in dairy. Even if you're not experiencing out-right reactions if it can happen you want to be cautious. Casein can make you almost as miserable as gluten.

Keep an eye on what happens if you eat oats. There's a fair amount of cross-contamination with oats, and it's possible your body might recognize the amino acid sequence in oats as too similar to that in wheat/rye/barley and may react.

I hope all continues to go well. Enjoy!

[mk777]

Thank you for the added information.  I will look at getting myself tested once I can afford it.

I'll keep you posted!

[mk777]

Well,...here's an update for you!

I am down 26 lbs.  My stomach and bowels feel perfect.  I had something to eat that, I believe, was contaminated, and needless to say, I felt it.  But, since that time, I have feel wonderful.  So, I think you have helped me find the reason behind my stomach/bowel issues.

Also, after thinking about it for a while, I realized that over the course of my life, I have had several physicals...at each of those, from childhood until all of this took place, I have had a tender stomach, bowels, when the doctor would push down.  I never thought twice about it...just thought it was normal or because I needed to use the restroom.  It only makes sense now that I realize where that came from.  Just amazing....

I'm sleeping better, AND, I am off all of my OCD medications.  Why, you might ask?  Because I looked at the link between food allergies and mental health issues.  There is a definite link, and I had to at least try, as I'm tired of taking them every single day.  The simple chance of feeling/acting normal (Relatively normal, :)  ) gives me a reason to try.

I have been able to handle the OCD tendencies much, much, much better these days.  I think I'm at the point where things are habits, not obsessions, so I'm working on that now, as habits are easier to break than obsessions.  I have good days and bad days, but I think that sugar consumption and caffeine also affect me, so I'm trying to improve my diet, gradually.

I'm still short on cash, so I haven't ordered the tests yet, but I still plan on it.  I am working out 6 days a week, and the amazing thing is how much my strength has increased now that I am getting nutrition.  I have increased my dumbbell bench press from 3 sets of 8 at 100 lbs (50 per arm) to 3 sets of 7 at 200 lbs (100 per arm), since AUGUST!

Thank you so much for your information.  I'll keep you posted...especially if my health changes.  I'm excited to be back where I was when I was fit.  245 lbs to 219 lbs at this point.  I'm shooting for 185.  Wish me luck!

[CalGal]

Mk777, it sounds like you're on a good course. I hope things continue to go well for you.

[mk777]

Thank you, again.  I'll keep you posted.