Painful digestive condition, round 2
July 16, 2012 11:24 AM   Subscribe

It's not parasites, IBD/Crohn's, or celiac - but the doctors have found no other explanation for this severe intestinal pain and chronic constipation than "IBS". Low HDL, metabolic syndrome. Gluten still seems to be a culprit - is this even possible?

I posted a previous question regarding this. 21, male. Newly diagnosed with low HDL and "metabolic syndrome". I'm starting a new exercise program and trying to cut out carbs, especially gluten-containing ones (yeah, sure - "no celiac" but SOMETHING very common makes my intestines burn, gives me embarrassing gas, and leaves me unable to fall asleep). Last year, I had a full colonoscopy/endoscopy, and several blood tests since. Nothing of interest found! Any advice?

Also diagnosed with ADHD and OCD/"general anxiety disorder", if that matters. Once again, I don't know if this is just a placebo effect, but the less gluten, the better I feel.

Are these things connected?

One of the doctors blames everything, including the digestive system, on "nerves", but I REALLY don't want to start with SSRI's.
posted by Seeking Direction to Health & Fitness (41 answers total) 4 users marked this as a favorite
Have you experimented with GAPS, low-FODMAPs, or Whole30-style "strict paleo" diets?
posted by Earl the Polliwog at 11:30 AM on July 16, 2012

Non-celiac gluten sensitivity is a real thing. I've experienced it myself, to the point where I am in the process of cutting out all gluten. This seems to be helping.

You say you feel better when you eat less gluten, but it can be really difficult to single out one thing as the cause unless you take a pretty focused approach. Have you tried cutting it out completely for a week followed by a "challenge"? Have you consulted with a doctor who specializes in food allergies/intolerances?

Also, what tests did you have for celiac? The common test given is notoriously unreliable and difficult for many practitioners to interpret.
posted by lunasol at 11:38 AM on July 16, 2012 [1 favorite]

Have you ruled out lactose intolerance?
posted by fight or flight at 11:38 AM on July 16, 2012

Have you tried elimination diets? I had a friend about your age who went through similar rounds of ruling out a bunch of different scary diagnoses and being frustrated at not knowing what the problem was... until they did an elimination diet and discovered it was one particular condiment on a favorite sandwich that was the worst culprit.

It sounds like the current carb-cutting may lead you down a similar path, so good luck in quickly finding out what helps you.
posted by ldthomps at 11:39 AM on July 16, 2012 [1 favorite]

Are you working with a dietician who is up on gluten issues and food sensitivities? I'd start by going completely gluten free and doing a careful elimination diet which you log carefully. If you're gluten sensitive you generally need to not eat any gluten - not just limit it. Some people can but especially while you're trying to sort this out I'd go rigorously gluten free.

You don't mention where you are - look for local support groups - online or no - gluten free isn't easy at first but if that's the fix things should get quite a bit better. It may not fix everything but if it's the cause of your digestive woes it will help a lot.
posted by leslies at 11:39 AM on July 16, 2012

I'm not sure exactly what your question is here. You've been diagnosed with Irritable Bowel Syndrome (which could fit given the very limited information you've given here), is there some kind of problem with that diagnosis? Are you getting treatment for the diagnosis?

IBS is a real specific thing although the symptoms and environmental and food triggers vary between people (and are not yet fully understood). My advice is work with your doctors to better understand the diagnosis you've been given (note: we can't diagnose you but I predict someone will try) and to understand the treatment options that are relevant to that. Dietary advice is definitely part of it but, again, not something you should be getting from randomites on the internet.
posted by shelleycat at 11:39 AM on July 16, 2012

(note: elimination diets, FODMAP testing, etc are all things you should be doing with a qualified professional who understands your specific diagnosis and problems)
posted by shelleycat at 11:40 AM on July 16, 2012 [3 favorites]

I don't have celiac, but I am terribly allergic to wheat. So, yeah, that's possible. Whether that's your situation is something you need to explore with professionals.

Get a referral to a dietitian who is experienced in working with people with IBS and with people with food allergies and sensitivities.

Best of luck.
posted by Sidhedevil at 11:43 AM on July 16, 2012

I recently did a test that examined my stool (yeah, not fun to collect) and tested for IGA antibodies for gluten, soy, egg and casein. I got results indicating that I have an abnormal levels of antibodies for gluten and soy. I don't see my doctor until tomorrow, but I expect to be told to give up wheat and soy. I have Crohn's, and if I understand what my doctor said it is possible that the intolerances are leading to some of my pain and discomfort. If you're interested, the lab that does it is called EnteroLab. I'm not sure how legit or common this testing is, I couldn't find much info on testing like this, so perhaps it is relatively new.
posted by gilsonal at 11:44 AM on July 16, 2012

Also diagnosed with ADHD and OCD/"general anxiety disorder", if that matters

It could be a nervous system problem. Have you been tested for B12 deficiency? It can cause all these symptoms too.
posted by vacapinta at 11:47 AM on July 16, 2012 [2 favorites]

Response by poster: Here was my previous thread:
posted by Seeking Direction at 11:56 AM on July 16, 2012

Response by poster: IBS is a "diagnosis of exclusion". IBD (i.e. Crohn's) is fairly specific. I have the former, not the latter.
posted by Seeking Direction at 11:58 AM on July 16, 2012

My wife is not celiac, but she went completely off gluten and it helped some, uh, digestive issues.

Being completely gluten-free is not easy. Gluten is in all kinds of things you wouldn't expect it to be in (soy sauce? really?), and if you really have a problem with it, even pretty minor contamination can cause a flare-up.
posted by adamrice at 12:00 PM on July 16, 2012

Dairy was a huge trigger for me, especially for gut pain, though that didn't come up when I was initially given the IBS diagnosis. Turns out I have milk allergy (not lactose intolerance). Seconding the suggestion of doing food allergy testing.
posted by catlet at 12:21 PM on July 16, 2012

My wife is not celiac, but she went completely off gluten and it helped some, uh, digestive issues.

Ditto. For y wife, fiber made things worse, and wheat specifically can wreak havoc. She went 30 years with horrible IBS until my switch to low carb solved her problems as collateral damage (collateral ... improvement?).
posted by rr at 12:33 PM on July 16, 2012

So you obviously really don't want to hear this, but you have had a lot of testing. While it's possible that it is something they just can't seem to track down, this could most definitely be somatoform. Your decision to "not start with SSRI's" or seek other appropriate forms of treatment could delay you getting better and managing this condition for a long time.

On a side note, I don't think haphazardly adding and removing things from your diet is a good way to try to track down a food allergy. And you might want to try to focus on better nutrition and keeping a good sleep schedule in general. 21 year olds are generally very bad at this. When my spouse has good stress levels and I am cooking 90% of our meals, her GI problems are nonexistent. Add fast food and restaurants to that mix and up the stress level, and things get bad fast. When she was about your age, she too was diagnosed with IBS and spent a lot of time looking for a better diagnosis to a problem that has mostly disappeared. Good luck.
posted by NathanBoy at 12:34 PM on July 16, 2012 [1 favorite]

On a side note, I don't think haphazardly adding and removing things from your diet is a good way to try to track down a food allergy.

Lest this convince you otherwise, trying an elimination diet as recommended above is by no means haphazard. It's a perfectly legitimate means of identifying food allergies and sensitivities where allergy tests and other diagnostic tools don't help. It's also very difficult to comply with strictly enough to get useful information, but definitely worth it.
posted by mchorn at 12:55 PM on July 16, 2012 [4 favorites]

IBS actually has specific, positive, inclusion criteria, it's not just what they label you with when they don't know what they're doing. You either need a better doctor or a better understanding of what your doctor is diagnosing you with (which would come with a good doctor discussing your specific case with you not from random people who have never seen your medical files). And probably to work with a properly qualified and experienced dietician since diet and lifestyle play a big role (including to rule out any as-yet-undiagnosed intolerances). Either way, there really isn't much the internet can help you with as we don't know if this diagnosis is correct and, even if it is, IBS really is very individualised so there are no hard and fast rules.

IBS does have a range of fairly well validated treatments, each effective in at least some subsets of patients, so just giving you a label and sending you away isn't really good enough either. You need to be working with your doctors to deal with this. This may include dealing with stress and anxiety as they are clear IBS triggers for basically every one, as well as getting on top of your specific dietary triggers. If you think the IBS diagnosis is still wrong then work on that too (with a professional), but don't just dismiss it because of an incorrect understanding of what the condition actually is.

(I have IBS, an MSc in digestive physiology and a PhD studying dietary interventions in IBD.)
posted by shelleycat at 1:00 PM on July 16, 2012 [4 favorites]

Do you take any medication (prescribed or over-the-counter)?
posted by FergieBelle at 1:08 PM on July 16, 2012

Response by poster: All I take is allergy pills (cetirizine) - and not even every day.
posted by Seeking Direction at 1:27 PM on July 16, 2012

Response by poster: I eat a very good, balanced diet - no fast food or junk food. Sleep is inconsistent, I admit.
posted by Seeking Direction at 1:30 PM on July 16, 2012

Response by poster: But the sleep problem is a chicken-and-egg problem for previously discussed reasons.
posted by Seeking Direction at 1:31 PM on July 16, 2012

Have you tried a cup of Activia daily? Sometimes something simple yields beneficial results.
posted by Cranberry at 1:32 PM on July 16, 2012

The sleeping thing: be sure to get outside daily. If you run/jog/walk/ all the better.
posted by Cranberry at 1:33 PM on July 16, 2012

Response by poster: One of the reasons I don't want to start with SSRI's is because of a specific "black box warning" that especially applies to those my age.
posted by Seeking Direction at 1:34 PM on July 16, 2012

If you garden, that could be a plus. The serene surroundings might ease the uptightness. Gardens can bring peace of mind. Perhaps a walk in a city park would help. There you are not responsible for weeds, moles, invasive species, the neighbor's dandelions, etc.
posted by Cranberry at 1:38 PM on July 16, 2012

Also here to suggest elimination diets. Look up FODMAP diet, worth a try. Get some good probiotics to strengthen your gut (I like Bio-Kult). If you are so inclined, I highly recommend making your own milk kefir. It's a probiotic powerhouse! And it's super easy.

And there absolutely is a connection between what you eat and how you feel. Don't let anyone tell you otherwise! Some people may not notice (congrats to them), but some do and the difference is HUGE!
posted by Neekee at 1:42 PM on July 16, 2012

Do the elimination diet! Easiest way to figure this out.
posted by fshgrl at 1:59 PM on July 16, 2012

I am serious and this seems like the exact cause. Stop eating anything with annatto extract. In some people it causes IBS and in children and in adults it cause severe severe migraines. ITs a horrible substance manufacturers are using to dye foods yellow. Its used in yellow american and yellow cheddar to make them yellow.

So avoid yellow cheeses. Look in all food labels most manufactured stuff will use annatto extract to make their foods yellow. Avoid any mac n cheese since that uses annatto extract.

I am serious about this as I suffer from it and american doctors dont know about it. Look it up. there is aeven a webpage about it because in people it shows up as IBS.

European products avoid using it .

Try it and you will see the difference avoid all annatto extract.
posted by majortom1981 at 2:02 PM on July 16, 2012

Oh I forgot its used in some spanish rice to make the rice yellow also. Canadian versions of cheerios use it to make the cheerios that yellow color. Its also used to make some things orange as well. another product that uses it is tgif friday orange creamsicle alcohol mix.

Also products that have fake butter in them have anbnatto also since manufactured butter uses annatto extract to make it appear to be yellow. One example of this is instant mashed potato mixes. Any flavored ones have annatto in them.
posted by majortom1981 at 2:05 PM on July 16, 2012

Nthing doing an elimination diet. Also, have you been tested for food allergies?

And you should keep a food journal too- keeping track of what you eat helps a lot in finding the problem food(s) and makes it easier to see patterns.
posted by Aliera at 2:06 PM on July 16, 2012

here is a link that my help
posted by majortom1981 at 2:06 PM on July 16, 2012

Btw- just read your other original question. But rash around the lips in addition to the gastro stuff sounds like it could be allergy. Could be a wheat allergy? Get tested for the top foods, if you haven't already.
posted by Aliera at 2:09 PM on July 16, 2012

Annatto/achiote isn't "a horrible substance" any more than peanuts are "a horrible substance" but it can be an allergen so it is something to discuss with your dietitian. (Annatto is one of those things that might be a seed or a nut but hasn't quite been defined.) For people who aren't allergic to it, it is a source of antioxidants.
posted by Sidhedevil at 2:53 PM on July 16, 2012

My partner has been diagnosed with small intestinal bacterial overgrowth and has symptoms very similar to yours. There is an actual test they can perform, but it took several attempts to get various doctors to perform it, because several of them didn't even know about the condition.
posted by mudpuppie at 3:04 PM on July 16, 2012 [2 favorites]

Definitely check for SIBO. I was sick for years, had every kind of test out there, was on my third doctor for this, and finally I got tested. One quick course of antibiotics and I was totally cured. I will say, though, another good GI doc I saw told me that SSRIs can help with GI issues beyond just regulating stress, etc: apparently there may be a connection between serotonin and regulation of timing of digestion. And if your digestion is too slow or too fast, the wrong kind of bacteria can take hold, and/or you can not have enough of the good kind of bacteria.
posted by faustessa at 4:58 PM on July 16, 2012

You may find this post interesting. An excerpt:
The cure, by the way, is the elimination of almost all fibre, absolutely all grains and a marked reduction of carbohydrate consumption. She initially ate 20g/d of carbohydrate but currently anything under 70g/d seems fine for maintenance. Some people have to go a little further and eliminate starches and unfermented dairy too, but that wasn't needed in my friend's case. Grain ingestion, especially wheat, causes an immediate flare. No wonder the high fibre diet was a disaster.

So what is the link between IBS, opioids and especially grains?

Our bodies manufacture many short polypeptides for use as neurotransmitters. One specific group of them are the endorphins. These are naturally produced to control many biological processes. Gut motility and the limitation of both physical and emotional pain are two major functions under endorphin control. Morphine-like drugs, including its diacetylated derivative heroin, drop on to endorphin receptors and produce constipation and happiness. Withdrawl does the opposite. Badly.

Endorphins are produced by ourselves. Exorphins are similar peptides produced from our diet. Partially digested gluten from wheat is a major source. Eating a high gluten diet produces lots of exorphins. Constipation, often after an initial spasm reaction, is the result, just as it is from heroin. And pain too, because although exorphins do reach the brain, they never get there in the quantity needed to produce pain relief or happiness. In fact depression is common in IBS patients, but then chronic severe pain coupled with totally wrong advice tends to lead to depression!

When an IBS patient eventually has a bowel movement there is an immediate removal of the exorphins in contact with the gut wall. Acute opioid withdrawl produces diarrhoea. Remember the opening scenes of Trainspotting, with the methadone suppository and the worst public lavatory in Scotland?

So IBS is a functional problem of constipation with gut spasm alternating with diarrhoea. Eating grains is the commonest trigger. Wholegrains are the worst! Try telling that to your doctor.
posted by callmejay at 5:28 PM on July 16, 2012

Gluten can definitely affect one's mind (or 'nerves'). Many docs still don't believe that there's any connection between our food intake and our brain function, which seems stunningly absurd. Nthing the recommendations to rule out a digestive culprit.
posted by Kibby at 9:52 PM on July 16, 2012

I too suffer from mysterious gut weirdness which is both food and stress/emotion-induced. Here's what has worked out well for me:

- legumes
- pasta
- vegetable oil (although it sneaks in takeout and packaged food)
- brown rice & most other whole grains like oatmeal
- unfermented dairy

Reduced/restricted amounts of:
- bread (some breads like pita are fine for me, others set me off, YMMV)
- cruciferous vegetables
- fruits, especially dried fruit

- animal products
- coconut & olive oil
- plain white starches (white potato, white rice, bananas)
- root vegetables (carrots, beets, parsnips)
- leafy greens
- nuts (not peanuts, they're legumes)
- yogurt
posted by overeducated_alligator at 5:14 AM on July 17, 2012

I know you say you don't want to take SSRIs (why, by the way?) but you really shouldn't let that get in the way of accepting the distinct possibility that the cause of your problems is psychological. The stomach and intestines are very responsive to your state of mind - there's a reason human emotion was for a long time believed to reside in the gut. Thing is, if it really is due to anxiety, casting around for something like a food allergy which leads to you living a constrained life is not harmless - there is a real chance that it will make your problem actively worse. I have actually seen this happen in real life - I knew someone with gastrointestinal problems which they were convinced were caused by certain types of foods. They managed to persuade many of the people around them that this was the case as well. Over time, the list of foods got longer and longer, so that it was very difficult to eat at all. When they finally treated the anxiety itself, the food problems went away.

There's a lot of stigma and misinformation attached to these kinds of problems, and I do wonder whether you haven't fallen prey to it a bit. You don't have to take medication to treat anxiety - it can be very responsive to therapy and other kinds of intervention. There are also medications which aren't SSRIs which treat anxiety. Just allowing for the possibility that your stomach problems are a way for your body to tell you you're feeling upset can be helpful in itself.
posted by Acheman at 12:14 PM on July 17, 2012

Response by poster: Well, after the family get-togethers this week end, I plan to try an "elimination" regimen.

Thanks everyone for the advice. Some notes:

- Annatto is an interesting suggestion...but some of the worst IBS symptoms I ever had were on trips to Europe.

- Yes, I've faced a lot of stigma, both with IBS and some of my other conditions - even in my close family. Namely, that IBS is only in women (false) or I'm a "crazy person".

- My primary care doctor keeps on saying it's "stress" or "nerves" and keeps on asking "is something bothering you"? Listen, I get these symptoms even when I'm on vacation and under NO STRESS. And no, nothing is "bothering me"!
posted by Seeking Direction at 6:39 PM on August 21, 2012

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