Specialist for a very special illness

September 14, 2012 9:04 PM

Gastroenterologist for brain cooties?

After 12 years, nearly 20 psych drugs, three therapists, three psychiatrists, and a few endocrinologists, I'm faced with the fact that I have a highly treatment resistant mix of agitated depression, GAD, panic and Bipolar II-ish symptoms with comorbid hypothyroidism. (Official diagnosis is Bipolar II and GAD. Hypothyroidism is under control for now.)

I am running out of feasible med options, and I have a very frustrated psychiatrist who's stumped, even after consulting with a specialized pharmacologist. Complicating matters is his general unwillingness to treat me aggressively because I seem "high functioning," and because -- in my mixed states -- I tend to become obsessed with my health. It sounds like a positive thing, but believe me, it's not.

During our last session, he admitted he was reaching but brought up the possibility of either: 1) an autoimmune disorder being partially responsible for my symptoms, or 2) a metabolic or GI reason behind my insane sensitivity and intolerance to nearly all medications, psych or otherwise.

Now, my question is not what drugs to take next or what therapy to explore. I'm heading into a long medical leave to try to get some of this under control, and my therapist, partner, and I are working on a plan for me to get by without meds if necessary.

My question is whether -- as my pdoc suggests -- a gastroenterologist might be able to help me.

If so, what should I mention, and what would he/she be looking for? I have a lot aches and pains and strong physical symptoms of anxiety and agitation, like a high heart rate and tremor. There's dry skin and hair, but that can be explained by the thyroid issues. I also currently have mild bloating, water retention, and acid reflux, plus strong sugar cravings, but I'd bet most of that is from my recent increase in Lithium. Blood panels have been normal.

So, any diagnostic guesses? GI, autoimmune, or metabolic issues that mimic or exacerbate mood disorders?

posted by lunalaguna to health & fitness (9 answers total)

If he's thinking a food sensitivity, like to gluten, a GI doc won't necessarily be able to help you because tests for food sensitivities aren't all that great if you symptoms deviate from the norm. Sometimes it's faster and easier to just cut a bunch of stuff out for a month, and slowly add things back in one by one to see where your problems are. Like cut out all gluten, sugar, and dairy products for a month. Then add in dairy, see how you feel. Add in gluten, see how you feel. Add in the sugar, see how you feel. If you want to go really strict about it, cut out all oats, grains, rice, white potatoes period and titrate those back in as well. If you find it helps it doesn't really matter what specific diagnostic criteria you fit, it just matters that you've found something that works.
posted by schroedinger at 9:25 PM on September 14, 2012

I agree with shroedinger, but I would suggest something close to six weeks to get a clean slate and then six weeks for each food. If you have a food allergy, then it can take a while to calm down from a consistent exposure.

My wacko GI issues went on for years until I finally got tired of overwhelming symptoms and did the slowest, most agonizing elimination diet I had ever done. I had to break food group down into subgroups (dairy into cow and noncow, then lactose into low lactose and no lactose) and slowly add them back in. If I had a reaction, then I had to go back o a clean slate and then add the foods back in a different order to make sure that I wasn't getting a cross-reaction.

It was a pain. I spent way too many meals eating plain protein and white rice, but after 18 months I am a lot better. I am really happy that I found my trigger foods and I am having a lot fewer bad days because of it.

Now my only issue is finding a GI doctor who will actually believe me when I tell him that I really do know what my problem foods are and it isn't my damn chewing gum.
posted by Vysharra at 9:54 PM on September 14, 2012

I also agree with schroedinger.

Remember, this was a psychiatrist you got the opinion from. The last time he did internal medicine type stuff was back in residency. That's not his specialty and it may be hard for him to see things from that perspective.

If you want to get an opinion on internal medicine possibilities, please see a good internist first - I think you should do that before jumping around to other sub-specialists, when your symptoms are so diverse and nonspecific.
posted by treehorn+bunny at 10:22 PM on September 14, 2012 [1 favorite]

I have Crohn's disease (GI autoimmune disease) and as a result, have "leaky gut syndrome". As a result of inflammation in my intestine and increased permeability of my gut, I have antibodies in my system for common foods such as oats, bananas, rice, etc. You can also develop these for medications, I think. The solution, as described to me, is to cut all triggers out. The half life of these antibodies is three weeks, so it will take me about a year to get rid of them. Then, if my gut is healed, I should be okay to resume eating the foods. I found out which substances were my triggers by getting IGA and IGG tests. I'm not sure if they can test for less common substances.

If you are looking for a model diet supposed to be low in inflammatory factors, check out the Specific Carbohydrate Diet. It really helped my Crohn's. I'm skeptical about their theories about why it works and who it works for (Autism?) but it did help me reduce my inflammatory symptoms. It feels really restrictive at first (because it is. say goodbye to processed food and sugar) but after I was on it for a few weeks the health benefits were clear and I felt less deprived. The internet (especially pinterest) is full of "SCD" recipes that have given me lots of ideas. The diet says lactose-free dairy is okay, but for me I'm allergic to casein, and so that is something to watch for yourself.

As a psychologist, nothing clearly comes to mind that has been shown to exacerbate mood disorders in the domains your doc suggested. However, it might be worth a shot. Changing your diet can be a pain, but is unlikely to trigger worsening symptoms. As you probably already know, bipolar is particularly sensitive to sleep variation and other changes in routine, so I might suggest making gradual changes to your diet, just in case. Better safe than sorry, when looking at manic episodes!

I'm not sure if you've looked into therapy as well, but there are great CBT treatments for Panic disorder that are incredibly effective. It might be nice to cross one complication off your list. GAD and bipolar are more difficult to treat, but exposure based treatments for panic are pretty awesome and are a good complement to pharmacotherapy. Memail me if you want more details.
posted by gilsonal at 10:39 PM on September 14, 2012

Our son was being screened for a slew of GI issues - allergies among them.

We were told *not* to change his diet before the screenings. The logic being that if we were throwing stuff against the wall just to see what would stick - like, say, cutting out all gluten because so and so's friend's daughter got all better after they did that - and cut what was actually making him ill, then the labs would not reflect that allergen (gluten in this example) because it wouldn't have been available in his system to cause the aggrivation that caused those markers.

So it could potentially look like he wasn't allergic to something, when actually he was.

What's the risk of that if we were already cutting the gluten?

Well if we'd heard "well gluten isn't the problem" we'd be more likely to reintroduce that to his system. They would have already ruled it out, but it would have been a false negative.
posted by Momorama at 12:39 AM on September 15, 2012

In the GI angle- were you tested for Celiac? If you suspect gluten you should get tested. It's a blood test, and you shouldn't start on any elimination diet until after the test. Also, you might want to get tested for food allergies, it's a quick test and at least you can rule those out. For a long time my only GI symptom was a heartburn and bloating, I never would have guessed food allergies, but yeah.

Of note though, intolerance and food allergies are different. You can tes
negative for food allergies but still be intolerant.
posted by Aliera at 2:28 AM on September 15, 2012

Yes, see an internist. There are a lot of things this could be and only some of them are GI-related.

I also really like the blog Evolutionary Psychiatry (by psychiatrist Emily Deans), which includes some information about research into food, diets, and psychiatry -- it might be helpful.
posted by pie ninja at 6:07 AM on September 15, 2012 [1 favorite]

To look further into your thyroid and other potential metabolic disorders, you want an endocrinologist. Screwed up endocrine system can affect your mood.
posted by Librarygeek at 12:54 PM on September 16, 2012

If anyone comes back to read this, I had some additional blood tests and ended up meeting with a rheumatologist who diagnosed me with lupus. So, the pdoc's hunch was sort of right, although there's very little overlap with that and the mood stuff, it seems.
posted by lunalaguna at 2:35 PM on October 22, 2012