Visit the Microscopic Colitis Foundation Website
I had my long-awaited appointment with an integrative medicine doctor on Monday afternoon, and I have to say, I am overwhelmed with feelings of relief, gratitude, fear and worry all at the same time. He's not a gastroenterologist, he's a Doctor of Osteopathy who specializes in pain medicine and treating chronic conditions with a number of different modalities, both regular and complementary/alternative. He also happens to be one of the favorite docs of the celiac community in my area, and a specialist in treating Ehler-Danlos Syndrome.
I was there for more than 2 hours and spent the better part of an hour going over my medical history from birth. His questions guided me in directions I hadn't pondered in years (like my kidney infection at age 3), and yet it all made so much sense. I was an international development brat who moved every 2 years throughout my childhood, back and forth from Latin American countries to the US. With every move, or with my annual visits to Guatemala, I had infectious gastroenteritis on a regular basis (at least once a year throughout my childhood). I even had worms (common in kids overseas). Frequent UTIs in adolescence and prophylactic antibiotics when going to the dentist for Mitral Valve Prolapse made me a frequent antibiotic user (despite seemingly good health). All this resulted in multiple assaults on my GI system and my DNA over the years -- this laid the foundation for my immune system dysfunction.
I asked why Latin Americans don't get AI diseases in their countries like we do, and he explained their bodies adapt to their surrounding bacteria. With all my travels, my body could never adapt. It was multiple assaults instead. In fact, my IBS started after a severe GI illness in Guatemala (probably Hep A). And the lactose intolerance became severe after a GI bug in Thailand. My doc joked, "Why did you go to Southeast Asia for your honeymoon? Because you hadn't traveled enough?!"
Throw in a pregnancy and prolactin-filled postpartum period with 4 bouts of mastitis and antibiotics, and it's no wonder my body and skin freaked out.
But wait, throw in my HLA DQ2 gene and my newly diagnosed Ehler Danlos Syndrome (Joint Hypermobility Syndrome), and you've got a connective tissue disaster on your hands.
Yup, I am officially diagnosed with celiac disease and EDS now (although not in my insurance records - in case I want more life insurance, etc). Regarding my negative celiac bloodwork 6 years ago, he explained gluten intolerance is a spectrum disease, with me fairly high up on the spectrum. He said my immediate, drastic improvement on the GF diet, and my severe symptoms after gluten rechallenge, combined with my obvious autoimmune involvement, are enough proof that I have celiac, and not a mere sensitivity. Regarding EDS, he could spot it from a mile away. My soft skin, my bruising, my crazy joints, MVP, etc. This condition I wondered about since my teens, the one that no parent or doctor ever cared to look for, explains so many crazy symptoms that have plagued me all my life. Hips and shoulders popping out of the sockets, scoliosis, pelvic separation during pregnancy, bleeding under my skin when I scratch a bug bite, etc. I wanted to cry. I did this morning. He also explained that more than 20% of his EDS patients have celiac, so there seems to be a connection there too, although he has a skewed sample given his specialty.
But that's not all!! My dermographia (skin writing), low blood pressure, and hives during exercise point to abnormal mast cell degranulation. And while I don't have full-blown POTS, I do have abnormal autonomic nervous system response (something I've always suspected too). The hammer test against one knee showed a slightly abnormal myoclonus response, which when combined with my restless legs and benign tremor, points to magnesium deficiency (I think). He said magnesium deficiency was virtually guaranteed given the long-term diarrhea.
Interestingly, he was not that focused on the LC/MC. It seemed to be a symptom of the larger set of problems, namely the celiac and gut permeability, in his mind. I was OK with that.
So, was there any good news? He said I am very lucky that I don't have neurologic damage from gluten -- no peripheral neuropathy, no headaches, no ataxia, etc. He has many celiac patients who only present with neurologic issues, no GI involvement. He said I will also age without wrinkles because of the EDS. I was suspect, given I have some wrinkles already, but they appeared after losing 10 lbs this year (which he said he sees all the time when people adopt the GF diet). So I'm hopeful. Incidentally, my 69 yr-old mother has no wrinkles, just saggy cheeks. She has my translucent, soft skin. And she had 2 brain bleeds (subacute subdural hematomas) recently. It's clear where I got my EDS gene…
He ordered a bunch of tests -- complete stool analysis, gluten-associated cross-reactive food sensitivities, intracellular magnesium level, and intestinal permeability screen. More details on those below. I follow up in 3 weeks.
So here I am, with a bunch of concrete, confident answers to questions that have plagued me forever. Things that I studied at nauseum wondering if they might apply to me -- now I have an expert telling me they do. At one point I joked, "Now you can see why I'm a hypochondriac." He answered, "You're not a hypochondriac, you are extremely well-read. You've done your diligence. But we have to do things one step at a time". When I asked if I have an autoimmune disease (besides celiac), he answered "Yes." I asked, "but which one?" He answered "we don't want to put a name on it, we want to put the brakes on it so we don't ever have to name it." This is PRECISELY the type of predictive, preventive medicine I was hoping for.
So I think I'm happy and relieved for myself. I think I will take a leap of faith and let this doctor take care of me for a change. I need a vacation from being my own disease detective.
I am assured that once I have a treatment plan, much of the follow-up can be conducted by my in-network primary care physician. And they even have a local gastroenterologist who they highly recommend!!As far as my kids go, that's another story. I strongly suspect they have EDS too, and I'm wondering what, if any, follow-up they might require. If my case is Type II-III and mild, will theirs be the same? My hubby drew a line in the sand about gluten intolerance tonight. My son was complaining of stomach pains and had diarrhea and suggested it might be gluten. My husband exclaimed, "you are 7 years old and have no reason to be worrying about things like gluten. You're fine." Fun times ahead!!
For your reference, here are the tests ordered by my doctor. Given how much this is costing me, I am skipping the new MRT test this year.
Genova Diagnostics CDSA 2.0 (stool analysis)
http://www.gdx.net/product/10006
Intracellular magnesium level (from cells scraped from under my tongue)
Cyrex Labs tests:
http://www.cyrexlabs.com/CyrexTestsArra ... fault.aspx
Intestinal Antigenic Permeability Screen
Includes:
Actomyosin IgA
Occludin/Zonulin IgG
Occludin/Zonulin IgA
Occludin/Zonulin IgM
Lipopolysaccharides (LPS) IgG
Lipopolysaccharides (LPS) IgA
Lipopolysaccharides (LPS) IgM
Gluten-Associated Cross-Reactive Foods and Foods Sensitivity
Includes:
Cow’s Milk IgG + IgA Combined ( CPT CODE : 86256 )
Alpha-Casein & Beta-Casein IgG + IgA Combined ( CPT CODE : 86256-59 )
Casomorphin IgG + IgA Combined ( CPT CODE : 86256-59 )
Milk Butyrophilin IgG + IgA Combined ( CPT CODE : 86256-59 )
American Cheese IgG + IgA Combined ( CPT CODE : 86256-59 )
Chocolate (Milk) IgG + IgA Combined ( CPT CODE : 86256-59 )
Sorghum IgG + IgA Combined ( CPT CODE : 86256-59 )
Millet IgG + IgA Combined ( CPT CODE : 86256-59 )
Spelt IgG + IgA Combined ( CPT CODE : 86256-59 )
Amaranth IgG + IgA Combined ( CPT CODE : 86256-59 )
Quinoa IgG + IgA Combined ( CPT CODE : 86256-59 )
Yeast IgG + IgA Combined ( CPT CODE : 86256-59 )
Sesame IgG + IgA Combined ( CPT CODE : 86256-59 )
Hemp IgG + IgA Combined ( CPT CODE : 86256-59 )
Rye IgG + IgA Combined ( CPT CODE : 86256-59 )
Barley IgG + IgA Combined ( CPT CODE : 86256-59 )
Polish Wheat IgG + IgA Combined ( CPT CODE : 86256-59 )
Buckwheat IgG + IgA Combined ( CPT CODE : 86256-59 )
Tapioca IgG + IgA Combined ( CPT CODE : 86256-59 )
Oats IgG + IgA Combined ( CPT CODE : 86256-59 )
Coffee IgG + IgA Combined ( CPT CODE : 86256-59 )
Corn IgG + IgA Combined ( CPT CODE : 86256-59 )
Rice IgG + IgA Combined ( CPT CODE : 86256-59 )
Potato IgG + IgA Combined ( CPT CODE : 86256-59 )
.
). I'm angry that my feet hurt in anything but the most orthopedic of shoes, to the dismay of my stylish husband. I'm angry that I've never been able to sit indian-style without my joints locking up and my butt hurting and falling asleep. I'm angry that my blood pressure, heart rate and related issues had an explanation, after all these years of bewilderment.