Chicago in October

Chicago in October

Catching up

When last we left our hero, she had visited a food allergy specialist, been diagnosed with asthma, seen an ENT, visited the Rensselaer ER, and was waiting for the results of her abdominal ultrasound. Since that time, the following events have taken place:

  1. Her GP said her overall mood would improve if she embarked upon a daily exercise regimen, whether she felt like exercising or not. Her GP also explained that many doctors were not be interested in our hero’s dietary sensitivities because said sensitivities do not cause especially egregious symptoms. She had not lost a significant amount of weight, nor had she gained a significant amount of weight. Nothing was broken or bleeding profusely. Western medicine, he explained, does not concern itself much with low quality of life or constant fatigue. Our hero found this explanation both frustrating and helpful.
  2. Much to our hero’s confusion, Dr. Kupfer’s nurse relayed that the ultrasound found that our her RUQ pain is caused by fatty liver infiltrates.
  3. With the encouragement and support of many friends, co-workers, and an Android app, our hero began a daily exercise regime consisting of running and lifting weights. To date she has logged 13 hours, 45 minutes, and 14 seconds, to complete 17 run/walks and covered a distance of 49.85 miles. She has yet to be attacked by a zombie and has saved exactly one (1) life.
  4. She noticed a strong correlation between an increase in running and a decrease in her RUQ pain – the same correlation she observed when she picked up running again in the last half of 2005.
  5. Our hero began tracking all her food in preparation for her appointment with the celiac dietitian, which was originally scheduled for October 13 but is now scheduled for November 19 as the dietitian was home sick on October 13.
  6. With the valor we’ve all come to expect from our brave hero, she agreed to participate in another UC research study. All the data from her UC charts will be depersonalized and added to a database of information about celiac patients. About 900 other celiacs are also participating in the ongoing study.

Now, for a summary of our hero’s most recent visit to the University of Chicago Celiac Disease Center.

Past and future diagnostic steps.

Past and future diagnostic steps. (Click to embiggen.)

Abdominal Pain

My RUQ pain may not be associated with my liver. The ultrasound is just a picture, and the picture shows something that could be fatty infiltrates, but again, it’s just a picture. The only way to verify whether or not I have fatty infiltrates in my liver would be a biopsy to look for inflammation. Because I don’t have any of the risk factors commonly associated with fatty liver infiltrates, Dr. Kupfer and the hepatologist she talked to don’t think that’s what’s going on. So, we’re back to square one with knowing the source of the abdominal pain.

What’s next?

We’re also at square one regarding the food sensitivities. Having ruled out uncontrolled celiac disease (endoscopy), another digestive disorder (endoscopy and colonoscopy), and food allergies, the next likely candidate is food intolerance. Dr. Kupfer said the medical community has very little information about food intolerances. The can only be treated with avoidance. So, she recommended I go on a FODMAP diet. The idea behind FODMAPs, she explained, is that some foods, like lactose and gluten, are extra-fermentable and draw water out of the gut, causing all kinds of GI symptoms.

I’ll try the FODMAP diet until November 19, when I see the celiac dietitian. Hopefully, by then, we’ll see a decrease in my symptoms – most notably, the RUQ pain. It could be that I’m missing an enzyme that helps with proper food digestion (fructose or sucrose intolerance, for example) but if that’s the case, we’ll know based on how I react to the FODMAP diet. I’ll also get checked out by a rheumatologist on November 19, since my Anti-Nuclear IFA was 640 (normal is 1-80). Dr. Kupfer doesn’t expect anything to come of that appointment because:

  1. My Anti-DNA Native Doublestrand was under 10, which is normal
  2. Rheumatological disorders aren’t related to food

We talked about how “functional” GI conditions compare to true food intolerances. Neither fall into the “disease” category, but both create very real symptoms. A functional GI condition means the symptoms have multiple triggers. In addition to a food intolerance, GI symptoms may also be caused by:

  1. An overgrowth of bacteria (treated with probiotic/antibiotic)
  2. Neurotransmitters in overdrive (in my brain, telling my gut that something’s wrong)
  3. Stress

Dr. Kupfer feels that I’m addressing #2 and #3 with my daily exercise. We talked about how the neurological symptoms I experience (since food intolerances cause predominantly GI-specific symptoms) might be due to a complicated loop between the neurotransmitters in my gut talking to the neurotransmitters talking to my brain.

I’ll see the food allergy specialist again on November 19 for an asthma follow-up, to make sure my asthma is being properly controlled by the medication that does not land me in the ER.

Long Term

If I don’t show improvement on the FODMAP diet, Dr. Kupfer isn’t sure what might be going on. She said she would then send me to the hepatologist for a liver biopsy (mentioned above). Failing everything else, she said she would admit me to the hospital to have me eat foods that make me sick and run tests on me during an “episode.” Specifically, she would be looking for D-lactic acidosis, which is a very rare illness normally found only in children. The test for D-lactic acidosis involves taking a baseline blood draw prior to an episode and then again during an episode. The food allergist would likely run tests on me at the same time, as well.

Regarding the management of my celiac disease, I can go to a lab in Bloomington once a year for blood work that she’ll call in, and the results will be sent to her for review. I can also, after consultation with Dr. Pinto, Dr. Behn, and Dr. Joyce, consider weaning myself off the vitamins I take. She says my intestines are healed enough that they should have no trouble absorbing nutrients.