My problem is not in my head, it's in my guts. Help me figure out what it is.
October 25, 2007 11:47 AM   Subscribe

Help me make my next doctor's appointment more productive than my last one. This is about GI stuff. It is long. It is gross. You are warned.

For about the last six months, I've had intermittent but ongoing issues with reflux, diarrhea, constipation, and nausea (but no vomiting). It comes and goes - I'll have a week that's all diarrhea all the time, and then one that's fine. Bad stomach cramps one day, nothing the next.

Over the course of about two months I got progressively worse reflux and heartburn; possibly related I've had abortive burps that feel like cramps in my esophogus. The reflux gets especially bad during exercise and often makes me stop.

I've been woken up in the morning by stomach cramps and needing to poo, I've eaten things and had them go through me in four hours (and yes, I'm sure it was the same thing coming out that just went in), I've had sudden and nearly-irresistible urges to use the bathroom NOW RIGHT NOW. There are a few areas of pain / discomfort (more discomfort than pain), including one near the crest of my right hip, another few inches under my right rib cage, and a third on my left side adjacent to my belly button.

This comes after a lifetime of having an absolutely cast-iron stomach, never nauseous, no diarrhea unless I ate something absurdly unwise, etc. This is very, very weird for me.

My GP gave me Aciphex, which helped with the reflux but not the diarrhea and nausea. A GI doc blew me off with a diagnosis of IBS caused by stress (I have an absurdly low-stress life, for real, but he wouldn't listen to that) and gave me a prescription for Librax, which I didn't fill after finding out that Librax includes a benzo (I have existing issues with depression and can't even take Zyrtec regularly because it makes me too dopey, but I didn't get the chance to discuss it with him - his nurse gave me the scrip after he'd already left.)

I have another appointment with a different GI doc coming up in November, but I'd like some input on what tests I should be pushing for and what this could possibly be. I know you're not doctors and this isn't medical advice. But I really don't want to spend another $60 to be told that it's all in my head.

Other stuff: I eat a fairly healthy diet and mostly cook for myself, whole grains and lots of fruits and veggies. 5'9", 140 lbs. Female. My maternal relatives have a history of gall bladder problems - both aunts and my grandmother. I've been tested for celiac, h. pylori, and intestinal parasites (all negative), and my GP also checked my hepatic function, amylase, and lipase levels and they were normal too.
posted by fuzzbean to Health & Fitness (28 answers total) 7 users marked this as a favorite
Between now and then make a journal of everything you eat and bring it to your appointment. You might find some patterns, but it could very well have nothing to do with food.

I have known people to have digestive problems for years only to discover they were lactose intolerant or something like that. Hopefully though it is something much easier to deal with.

Best of luck.
posted by munchingzombie at 11:55 AM on October 25, 2007

Protonix worked for me. I often found other PPIs didn't work very well.

If I were in your shoes i'd probably ask for an upper endoscopy or similar. You said whole grains and lots of fruits and veggies, does that include yogurt?
posted by arimathea at 12:21 PM on October 25, 2007

You know, on review, i'd really consider not waiting until November. The discomfort you suggest could be a sign of a much more serious problem. I'd consider either a) pushing to get into the GI doc sooner, b) going to see another internist, or c) maybe even making a trip to the ER. You mentioned your healthy diet, how's your meat consumption? Iron intake? B-12? Has your diet seen many changes? Drinking anything differently?
posted by arimathea at 12:24 PM on October 25, 2007

Yep, what you want is a symptom diary. Get a little notebook, write down what you eat everyday on one side of it, and your symptoms (if any) on the other side. Make sure to include non-GI symptoms if you have them at the same time. You only have to do this for a few weeks, so it's fairly do-able.

Additionally write down:
- every single diagnosed illness you have. (hypertension, diabetes, etc.)
- any surgeries
- any hospitalizations (incl. psych)
- obstetric/gynecologic history
- allergies
- what medications you've been on and their effectiveness (be sure to note adverse effects and side effects of them)

Ask about a endoscopy and colonoscopy with biopsies to see if these are appropriate procedures for you to have. You symptoms are reminiscent of Chron's disease. Ask you GI doctor what he/she thinks about that.

And if your GI does diagnose you with anything ask him why he thinks that. What are some other probable diagnoses? Why is he leaning towards one thing, but not another?
posted by ruwan at 12:30 PM on October 25, 2007 [1 favorite]

Sounds like the kinds of symptoms that many people with Crohn's or ulcerative colitis experience. Go to the GI - it's worth the 60 bucks. A colonoscopy and/or upper endoscopy could help with that diagnosis. IANAD, yadda, yadda.
posted by chrisamiller at 12:32 PM on October 25, 2007

Munchingzombie's idea of a journal is good. However, in addition to bringing it to your appointment, fax it to your doctor a day or two before.

I've found that doctors have much better answers if they have some time to think about the questions. I mean, come on, even Dr. House needs an hour to diagnose diseases.
posted by GarageWine at 12:33 PM on October 25, 2007

Response by poster: On diet:
Yogurt: Not really. I've been trying to eat more, but I don't really like it.
Meat: I'm a vegetarian. I had cut back on meat about five months before this started (but was still eating it about once a week); I've been full-on vegetarian (still eating dairy and eggs) for the last three months. I've had periods of similar low levels of meat consumption (weekly or maybe semiweekly) in the past with no issues.
I eat leafy greens from the farmer's market a few times a week. I'm not currently taking any vitamin or mineral supplements.

I also feel like I should mention that it's only intermittently bad; I'm not in consistent pain or tied to the toilet all the time, but it is definitely a noticeable change from normal. This is mostly discomfort and abnormality, not active pain (although every so very rarely I will get a stabby feeling for a second or two).

And no fear: I am definitely going to this appointment. I'd just like it to be more productive this time; the last doctor was a total waste.
posted by fuzzbean at 12:44 PM on October 25, 2007

It is SO unproductive when they imply intestinal problems are in your head. Next time they do that, just walk out of the room and don't look back. I would refuse to pay. It's insulting.

Have you recently taken antibiotics?

Have you done any travelling?

Changed vitamins?

Even though your celiac test came back negative, I'd watch the wheat. The typical tests aren't reliable. If you eliminate wheat and all your symptoms go away, that is the best test. Replace with potatoes and also eat broccoli.

When you next visit a doctor, try to find an internal medicine doctor at a teaching hospital. And, I agree, sooner would be better.

In the meantime, pepto bismol is your friend. Keep it in a little bottle and carry it with you everywhere. Malox before you go to sleep. Keep your head a little elevated, like with two pillows. It will help with the pains (if acid related).
posted by Eringatang at 12:45 PM on October 25, 2007

Are you eating a lot more soy now? Soy = tofu, many protein wraps, replacement meats, drinks
posted by Eringatang at 12:46 PM on October 25, 2007

Response by poster: And, fwiw: I brought along a fairly detailed, month-by-month breakdown of symptoms to the appointment with the last GI. His reaction was that this was evidence of my type-A personality (okay, somewhat true) and therefore my symptoms were caused by stress (um, no). Is there any good response to this aside from getting another doc (which I am)?

Soy: I KNOW soy gives me problems and I'm very, very careful about how much I eat (not much, not often.) I hit cheese, eggs, and lentils more than soy for protein.
posted by fuzzbean at 12:50 PM on October 25, 2007

Have they tested you for Crohn's? There was a post about it on the big blue today and the symptoms seem similar.
posted by gnutron at 1:03 PM on October 25, 2007

Second teaching hospital. Second ignore "all-in-ur-hed" BS. I have no real advice except: Persevere!

House doesn't work the whole hour, he spends a lot of it clambering up on ladders to ponder his emergency morphine stash. My advice is to believe there is a House in your town and keep going until you find him or her. I still remember the day I was diagnosed with tomaculous neuropathy after years and years and years of everybody telling me they didn't know but maybe I had Charcot Marie Tooth but probably not since the symptoms didn't match and far more likely I was just a crank. It was like ten years before House was even a glimmer in anybody's eye but the neurologist in Q was appealing in exactly the same way House is. He had hubris and bad bedside manner, but his delight when he nailed in two seconds the diagnosis so many failed to find for 25+ years was so infectious it didn't matter. He told me to get a blood test and went calloo callaying down the hall with his med student entourage, and some days later I ran out into the parking lot suffused with joy and waving the piece of paper with the results of the a blood test proved I had what he said I had. It was a great day, even though "tomaculous neuropathy" sounds and is a dull pale no-glam cousin of "Charcot Marie Tooth Disease." You know you have something, even if day after day doctor after doctor tells you you don't. Keep looking and don't lose heart. Every constellation of symptoms has its Dr. House. Yours is out there somewhere.
posted by Don Pepino at 1:09 PM on October 25, 2007 [1 favorite]

I had many of the symptoms you've described and like arimathea, Protonix has worked wonders. My problem turned out to be excessive stomach acid which caused an ulcer in the fundus (top part of the stomach, I think).

I would push for an upper GI/endoscopy, if you haven't had one already. I suffered with the "stomach flu" for more than two months before I convinced my Gastroenterologist into giving me an upper GI and voila, ... ulcer. Protonix made a world of difference.

Good luck.
posted by SoulOnIce at 1:11 PM on October 25, 2007 [1 favorite]

My GI recommended going to ccfa for information. I'm not a doctor, but what you describe sounds consistent with Crohn's Disease or a similar IBD. From the site:
Persistent diarrhea (loose, watery, or frequent bowel movements), crampy abdominal pain, fever, and, at times, rectal bleeding: These are the hallmark symptoms of Crohn's disease, but they vary from person to person and may change over time. Loss of appetite and subsequent weight loss also may occur. However, the disease is not always limited to the GI tract; it can also affect the joints, eyes, skin, and liver. Fatigue is another common complaint.
Read up. It's a fairly miserable condition, or at least it has been for me. I had a lot of loose stools that I attributed to a high fiber vegetarian diet. One night I ended up curled up like a cooked shrimp, whimpering, thinking it was just a lot of painful gas, but it necessitated an ER trip.

Kudos to you for getting this investigated before you need a couple shots of morphine just to take the edge off. As far as I know, the only way to truly diagnose Crohn's is via a biopsy. It was thought that I might have had a bacterial infection, so they pumped me full of antibiotics first to see if I got better; I didn't. Then they did the colonoscopy, which involved drinking one of the most ironically named products ever, GoLYTELY, whose unpleasant intestinal flushing powers were nearly offset by the narcotics they gave me prior to the colonoscopy.

The symptoms you describe are pretty dang close to me: a lifetime of being able to eat nearly anything without an issue, then a lot of intestinal distress and pain on and off. I'm nearly in remission now, but asparagus still wrecks me. Asparaus, for pity's sake!

On a related treatment question, I was given a bunch of tangential good advice in this AskMe question.
posted by plinth at 2:15 PM on October 25, 2007 [1 favorite]

Yep. Push for a colonoscopy and endoscopy. You certainly have symptoms (from my experience with it in a family member) of Crohn's or ulcerative colitis. And you need both. IBD can manifest anywhere from the mouth to the anus.
posted by Neiltupper at 2:16 PM on October 25, 2007

Oh, for sure colonoscopy. I was having much the same symptoms, and would have diarrhea at night while I was sleeping, not fun... They took a couple biopsies and the diagnosis came back as collagenous colitis. Not as painful as ulcerative colitis, but quite the nuisance nonetheless. Good luck to you.
posted by wafaa at 3:00 PM on October 25, 2007

To add to what I said earlier, your symptoms sound exactly like the few months of hell I went through before I was diagnosed with Crohns. A correct diagnosis and some anti-inflammatory meds have made all the difference in the world for me.
posted by chrisamiller at 3:49 PM on October 25, 2007

Some really good advice here. In the experience of friends with similar symptoms, doctors aren't great at diagnosing GI stuff and often tend to treat the symptoms rather than figuring out the cause. Which appears to be your situation. IBS can be an umbrella diagnosis, and there doesn't appear to be a standard cure. And you don't want to be on drugs for the rest of your life, you want to sort it out! You're well within your rights to keep pressing doctors for answers.

Coeliac's disease - the damage (and hence the symptoms) is progressive, and (as I understand it - IANAD) the blood test can only tell whether you have advanced Coeliacs rather than whether you're in the process of developing it (my sister has it and her specialist (in Australia) suggested I get tested, so I did (in the UK), but all they could tell me was that I wasn't showing symptoms, which I kind of knew already. Whether I may be in the early stages and may develop it later was not possible to determine, apparently. That could just be my dodgy GP, so I may be wrong.) But it took her 2 years from the point at which she was tested to reverse the damage and get back to normal (with a changed diet) - and she'd had 2 years of GP / specialist vists before the final diagnosis. So abstaining from wheat and observing the results might help you address things before they get really bad, if it is Coeliacs.

Also, thrush (candida) can cause similar symptoms. Very difficult to diagnose, and GPs tend not to like it as a diagnosis. Have you considered going to see a nutritionist or other complementary therapist? I've had 2 friends (both vegies with good eating habits) with similar symptoms and both (independently) ignored their GPs' "it's IBS and there's nothing much we can do" diagnosis and saw nutritionists, ended up on (quite restrictive - be warned) anti-candida diets, and within a couple of months, saw very good results. One of the GPs was supportive of the diagnosis, one wasn't.

Chrons is also a possibility as others have said.

Good luck - and persevere, don't be fobbed off!
posted by finding.perdita at 4:10 PM on October 25, 2007

this sounds like some of the symptoms i had of big tumors stuck to my ovaries. see if your doc will order a cat scan for you.

any menstrual irragularities?
posted by rmd1023 at 6:49 PM on October 25, 2007

One of the hallmarks of ulcerative colitis is stool with a white mucus, sometimes tinged with blood. The hypermotility you're describing (quick passage of foods eaten within a couple of hours) is yet another symptom. There's an urban legend among patients with UC or Crohn's of a guy who can swallow an ice cube and pass it out the rectum before it melts. I've passed some things within 90 minutes of ingestion.

The 'now right now' feeling you're having is another hallmark of UC and Crohn's. It's medical name is tenesmus, and I know exactly what you mean by 'now right now'. It's a truly miserable condition, best described to others as "dry heaves" of the rectum. If you've ever been really, really drunk and have been unable to stop vomiting during your hangover the next morning, tenesmus feels exactly like that except it's not vomiting – you can't stop running to the toilet, and it's almost always a false alarm except for a little blood or mucus. One day when I had active UC I counted how many times I ran to the bathroom – 17 times in four hours. It's exhausting.

Also, when I had active UC (I had my large intestine removed 10 years ago this month) my hips hurt all the time, in the joints. The inflammation of UC spreads throughout your body. It's miserable, and you're describing very similar symptoms. I don't remember the upper GI distress, but it could be caused by disease lower down in the large bowel.

Get a colonoscopy, or even a flexible sigmoidoscopy, soon. Family docs sometimes write us females off as having "too much stress" especially if they're unfamiliar with inflammatory bowel disease. If it is IBD, you want to know sooner rather than later. Good luck, and keep us posted.
posted by lambchop1 at 10:35 PM on October 25, 2007

The symptoms you're describing could actually fit IBS really well, with a side order of dyspepsia (IBS is often coupled with stomach problems like reflux and overacidity). And yeah, IBD could be the problem instead but the dyspepsia points away from that somewhat. The thing is, IBS isn't always caused by stress, it's not just in your head, it is a valid illness, and there are a number of ways to treat it. Your doctor should have talked with you about treatment options and helped choose something that works, or at least justify why he gave you that prescription and why you should be filling it.

So when you go for your next visit (and getting opinion is a good idea here) don't just brush it off if they repeat the IBS diagnosis. Try and find a doctor that will work with you on treatments since to me that's the big red flag so far. Working to find a different diagnosis is also valid and endoscopies, barium meals, etc could be helpful, hopefully you can find a doctor who will listen to and work with you rather than brush you off. GI complaints are really hard to diagnose and difficult to treat, taking time and trying things is unfortunately often how it works.

I'm not a doctor but I am a digestive physiologist/biochemist studying IBD and living with IBS. I have some review articles about IBS, IBD, dyspepsia, etc and am happy to send pdfs etc if that would be helpful. Email is in profile but possibly won't be checked until next weekend (I work out of town 6 days per week right now).
posted by shelleycat at 9:47 PM on October 26, 2007

Endoscopy to r/o Barret's.
HIDA to help discern possible cholestatic problems.
Consider asking about ramping up your treatment as well, since undertreated reflux can trigger diarrhea.
And clonoscopy can find out if you have an inflammatory bowel disease (very different from IBS) as well as biopsying for celiac disease.
posted by docpops at 7:48 PM on October 30, 2007

Response by poster: An update: I finally got in to see the GI doc today, and this one was AWESOME. I'd been keeping a food and symptom diary and she was really excited by it. I'll go in for an endoscopy and colonoscopy most likely next Wednesday, which means that next week I'll be taking the GRE on Monday, pooping on Tuesday, getting cameras stuck up bits of me on Wednesday, and...shit, I don't know if I'm doing anything for Thanksgiving.

Um. Yeah. Rockin' holiday. At least it's progress.
posted by fuzzbean at 6:11 PM on November 14, 2007

One thing that hasn't been mentioned yet is fructose malabsorption, also called fructose intolerance, which I have - my symptoms were very similar and had doctors baffled for years.

Your comment about eating lots of fruits, veggies and whole grains made me think this might be something you should look into - that was my diet, pre-diagnosis. Now I avoid all fruits, most grains, and most starchy vegetables, and am symptom-free.
posted by chez shoes at 1:19 PM on January 3, 2008

I'd love to hear some progress on this.

One thing no one's mentioned is that if you have IBS one thing you absolutely should not be doing is eating a high fiber diet -- i.e. whole grains and lots of fruits and veggies. It's the mean irony of IBS, which is that all the food that is healthy for everyone else causes, er, violent reactions in your intestine.

So instead of IBS caused by stress, think IBS caused by eating a slice of whole wheat bread. Who knows why the IBS showed up all of a sudden? You don't give your age, but I know someone who was fine and then when they were in their mid 20s suddenly it showed up in the middle of nowhere (although, to be fair, she was under a good deal of stress, but so are a lot of people and they don't develop IBS -- my guess is it just happens to some people, sorry).

So, try cutting down on the high fiber foods, and try to eat some white bread or white rice or some other simple carbohydrate at each meal, to help your body deal with the insoluble fiber.

Hope that you get better!
posted by Deathalicious at 1:09 AM on January 5, 2008

Response by poster: Okay, so finally an update.

I went in for the EGD and colonoscopy on Nov. 29. The worst part was waiting in a hall for two hours (alone, because there wasn't room for my boyfriend in the hall). That part was all kinds of awful but on the bright side I remember nothing of the rest.

I finally got to see the doctor for the follow-up last week. (Remind me to not leave stuff like this until right before the holidays, please? That was really dumb.) I have some mild inflammation in my stomach and duodenum and a spastic colon, but no pathological abnormalities anywhere. She diagnosed IBS in the lower bowel and suggested I see an allergist / immunologist to try to figure out if a food allergy could be causing the stomach inflammation. Gave me a few prescriptions for various things to treat symptoms, suggested trying an elimination diet, and said to come back if I lost any more weight or had bloody stools or an increase in pain, and she'd do a capsule endoscopy to check out the small intestine. She's pretty sure it's not celiac, since the blood tests and biopsies were both normal, and also that there's no h. pylori present since two blood tests and the biopsies came back negative and there were no ulcers.

The thoroughly annoying thing is that the symptoms (both reflux and diarrhea) have been much better over the last month or so, to the point where they're barely abnormal. So....yeah. I'm in a holding wait-and-see pattern for right now, but at least I'm not nearly as much of a wreck as I was in October. Which is good, but I do wish I had a bit more of a solid answer or at least a reason for getting worse and then better. I have an appointment with my GP in February for a normal physical and I'll talk to her about getting the allergy blood test done.

Thanks, all, for your help, support, and suggestions.
posted by fuzzbean at 6:25 PM on January 16, 2008

If you were given the basic test for celiac disease at the doctor's office, I would suggest getting a second test (a poo test) done through Enterolab. That's how I got diagnosed after my basic doctor's lab test came back negative---and after I learned from other doctors that that test is basically useless for many people because of its high false negative rate. Enterolab tests for a more comprehensive range of gluten intolerance than strictly celiac, too. I found out through that lab that I am intolerant to gluten and casein (the primary protein in dairy). I never had a stomach of steel, but my symptoms got WAY worse after an emotional crisis, and apparently an emotional or physical crisis can bring celiac into the forefront of the body's awareness.

I also turned out to have a variety of food allergies, which I had diagnosed through a blood test for both immediate (iGe) and latent (iGg) food allergies. For me, cutting out gluten and casein alone wouldn't have been enough, because if I'd kept eating eggs and soy, I still would've gotten sick.

Our bodies can be quite complex, so I can't say with any certainty you and I have the same issues. But I had many of the same symptoms you describe.
posted by sally_jp at 7:28 AM on August 4, 2008 [1 favorite]

I don't know if you are still struggling but I've been struggling with similar problems for nearly 20 years. I tried Enterolabs mentioned above. The good thing is they can tell you for certain if you have the gene for celiacs. So you know for sure if you don't have it, you will also know if you can have it because you have the gene for it.

As per other stuff. My results basically told me I was slightly sensitive to everything they tested for. I took the results to a GI doctor and she told me it was a BS test and didn't show me anything (besides the Celiacs). I didn't listen to her and didn't eat any of the things i had slight positives for, for four months but felt no better.

I have not had much luck with GI doctors nor nutritionists in the past. GI doctors basically found nothing. Nutritionists were too experimental and nothing ever seemed like it was helping.

I finally went to see a naturopathic doctor today. No results yet - but it seemed very promising. She mentioned three tests I've never even heard of before in any of my MANY MANY doctor visits for this issue. She mentioned a better comprehensive food allergy and sensitivity test that tests for 128 different foods and spices. I would highly suggest doing that as opposed to the enterolab test. Just make sure you also get a DNA test for celiacs - that can tell you for sure you don't have it.

I think it's important to a) try many things and keep an open mind. b) find a doctor you are comfortable with. I've gotten a lot of crap diagnosis with false hope of getting better and none have been successful yet.

Good luck.
posted by ChloeMills at 6:45 PM on October 22, 2008

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