Diagnosis: Celiac Disease
My journey toward my diagnosis with Celiac disease. It may have started as early as age 16. I can remember eating lunch and feeling tired afterward. I took a 2-hour break for lunch in high school so I could go back to my room and rest (I lived at a residential school for the last 2 years of high school.) I also got sick a lot. I often complained of exhaustion, and my moods were all over the place.
The doctors I went to told me to get more sleep.
Things got worse as I got older. By the time I was 25, I was sleeping for a few hours every day after lunch, and not feeling any better after I woke up. Doctors told me to “take it easy” and “work less” (I worked 60-hour weeks or more, typically.)
I began to develop a hatred of the medical community.
I went on the Internet. Using websites, I diagnosed myself with hypoglycemia (and blogged about it.) This was when I was still running my hosting company. I was pretty used to doing everything myself, and I didn’t think much of any doctor I’d ever had up to that point, so diagnosing myself on the Internet seemed the logical thing to do. I quit sugar cold turkey and dealt with the cravings.
Quitting sugar certainly helped my mood, but the exhaustion continued to get worse. In addition, I developed two other symptoms: recurring bladder and yeast infections.
“Isn’t there anything I can do?” I begged multiple gynecologists.
“No, not really,” they replied. “It’s common in women who are on the Pill.”
It got to the point where I could just call and they would have a pill ready for me to fight off that month’s infection. Eventually, disgusted with having to wait until business hours, I ordered my own fluconazole on the Internet, and stockpiled it in the bathroom for the next infection that was bound to happen.
I came down with a bizarre bacterial infection on my skin. Went to the doctor. “Why do I have this?” I demanded. As they cut me open (with minimal painkillers) to clean it out, they simply shrugged. “It happens,” the woman who was stitching me back together said. “We don’t know why people get this.”
In the meantime, I was having chronic back pain. I went to a chiropractor (who became the only doctor I trusted.) He helped me find a good massage therapist. I started getting chiropractic work and massage every week.
Convinced there was still something wrong with my diet, I went pescetarian for 30 days (which continued for months afterward) and also did a liver flush. The liver flush helped for a few days. Pescetarian (though I was unwilling to admit it, as I really enjoyed the diet) didn’t really help at all.
My World Comes Crashing Down
It was May 23, 2009. I spoke at Pat O’Bryan’s UnSeminar6. For the first time, I made an offer from the stage…and 10 people signed up! I was overjoyed. I would finally begin a new business. I promised to teach them how to build blogs.
I was sleeping 10 hours a day even at UnSeminar, and still feeling exhaustion after meals, but I had myself convinced that this was mental. That if I had customers motivating me and pulling me along, I’d be able to get back into the game.
This was exactly the wrong decision.
When I got home, I could barely stay awake. I was sleeping 15 hours a day or more. My sex life was completely gone (not that it had been that great for months, what with my energy levels being so low.) I felt awful. I could barely drag myself out of bed to blog. Now I knew there was something seriously wrong.
My boyfriend insisted I find someone who could help me out. There was no way I was going back to the idiot doctors, so I asked for recommendations from people I trusted (at that point, my chiropractor and massage therapist.) My massage therapist recommended a nutritionist.
I went to her on June 19. I nearly fell asleep in her office. She was concerned. She thought it might be gluten intolerance. She immediately got me a blood test.
The results were in a few weeks later. I had mono. But the gluten intolerance test returned negative. “See?” I told her proudly. “I knew I didn’t have any food allergies.”
In the meantime, we moved to San Diego. Thank God we hired a full-service moving company; I would never have had the energy to help pack our stuff. I had recently quit my Pilates class because I couldn’t work out for more than 15-20 minutes without finding myself in an exhausted fog.
My chiropractor in San Jose recommended a chiropractor he trusted in San Diego. I saw her in July. My new chiropractor gave me a mouth spray that was supposed to help get rid of the Epstein-Barr virus (that caused mono.) I used it and felt better within a few days. “I am cured!” I thought happily.
Instead of sleeping so much at night, however, I was collapsing for 4 hours after I ate any meal. I’d eat, and about 40 minutes later, I’d sleep and wake up 4 hours later, groggy and disoriented. Something was still wrong.
More Tests Reveal The Real Problem
In August, I did a stool test. The test shows what your body can’t digest properly, and also shows parasites, which commonly cause fatigue. The test results came back and, on September 9, I had a chance to speak to my nutritionist.
The stool test showed fat malabsorption. Even though I was eating, my body wasn’t digesting all of the nutrients from the food. No wonder I was feeling exhausted!
But the “jackpot”, as my nutritionist called it, was a line on the test called “Anti-Gliadin sIg A.” Mine was labeled “High.”
“You have gluten sensitivity,” she said. Then: “You need to try going on a gluten-free diet…the sooner the better.”
“But…” I protested, remembering the words a friend had said to me a week earlier. “Gluten is in everything.”
And indeed, it is. Gluten is found in wheat, barley, rye, and some oats. A gluten-free diet means complete elimination of all of those things. No bread, pitas, cookies, cakes, pies…oh, and weird things like soy sauce, which is brewed with wheat. And many sauces, which use flour to thicken them. Which means I couldn’t eat at many restaurants.
I knew I didn’t have any real choice. I would have to try this insane diet.
I went out to eat with Richard. Like a condemned person, I decided I would have one last really good meal. We went to an Italian restaurant and I got some hand-rolled pasta. It was delicious. I ate as much as I could.
Then I came home and slept for 4 hours. That sealed it for me. I was going to attempt the insanity.
The next day, I went shopping basically the entire day. We did a “kitchen purge”, spending nearly $300 and replacing all our flour, bread, pasta, etc. with gluten-free equivalents. (Did I mention that gluten-free ingredients are expensive?) I realized I was going to have to learn how to cook.
The Final Test Results
In the meantime, I told my new chiropractor what was going on, and she advised me to get a genetic screening test for Celiac disease. I ordered the test.
On October 1, as I was standing in line to check in at my hotel for Steve Pavlina’s Conscious Growth Workshop, I decided to check my email on my cell phone. One jumped out at me immediately: the test results from the genetic screening test. I opened the email. It said “HLA-DQ 2,3 (Subtype 2,7).”
The email explained what the heck that meant. Each of us has genes from both our parents. One of my parents had given me the gene for Celiac disease. The other one had given me a gene for gluten sensitivity.
I had just about the worst possible combination of genes. I would never be able to eat gluten again. And, for the first time, I had to come to grips with what it meant to have a disease for which there was no cure. A disease which, until just a few weeks ago, had been destroying my body. A disease I had had my entire life, which had gone undiagnosed for 28 years.
A disease I was guaranteed to pass on to my kids, should I choose to have them.
Interestingly, the universe had sent me people to help. My chiropractor here in San Diego is also gluten-intolerant. My nutritionist’s husband has Celiac disease. And San Diego itself is full of supportive businesses, including local pizza places, an Italian restaurant, and a gluten-free bakery.
What Is Celiac Disease?
Celiac disease is one of the most common diseases, affecting mostly women. It is genetic, and tests for it have been recently developed. It is quite common in anyone with Northern European heritage (as I like to say with a smile, it affects mostly white women!) It is unknown why it affects women more than men.
It is an autoimmune disease, meaning your body attacks itself when you eat gluten. Common symptoms include upset stomach, fatigue, malabsorption, and bloating. It is often misdiagnosed as chronic fatigue syndrome or irritable bowel syndrome.
Since your immune system is busy fighting off gliadin by mistake, you may come down with other infections…yeast infections; bacterial infections…and yep, even mono.
It is estimated that 1% of the U.S. population has Celiac disease and up to 15% of the U.S. population has some form of gluten sensitivity. However, only 5% of those with Celiac disease in the U.S. are currently diagnosed. That means that there are literally millions of people running around wondering, like me, why they are so exhausted all the time.
Why You Haven’t Heard of Celiac Disease
If this disease is so common, how come you’ve never heard of it? The pharmaceutical companies don’t touch it because there is no drug to cure it. Since it can be managed by diet alone, there is no profit in it for them. Since tests have only very recently become available, most doctors (who went to medical school before it was known that Celiac is so common) don’t think to diagnose it. There is a huge knowledge gap with Celiac, which means people suffer needlessly.
Since going low-carb (a few months ago, before I was diagnosed) and now gluten-free, I have lost 13 pounds. I feel better and am now sleeping ~7-8 hours a night instead of 10-12. I no longer feel exhausted after I eat. My stomach is healing, and I am taking supplements to help it along. I have not had any more infections, and I have enough energy to exercise regularly. Plus, I managed to salvage many of my blogging clients and am now helping them build authority blogs.
The best part is that, after many months of delays getting my new business off the ground, I am finally ready to announce it publicly! And wait till you see what I have in store for you…including an amazing contest. I’m going to open my entire business model to you. That starts later this week!
If you think you might have Celiac disease or another food intolerance, please find a nutritionist or doctor you trust, and have them order the tests. The tests I took to diagnose it were a gene panel from EnteroLab and a stool test from Metametrix.
Finding people you trust is an important step in this. Talk to your doctor or ask for advice from someone you trust. (If you live in the San Francisco Bay Area, I can refer you to my nutritionist in Los Gatos; contact me and I will send you her details.) The most important takeaway from this is that it’s not normal to feel exhausted after you eat or to put up with other symptoms. Many people self-medicate with caffeine, antacids, or other drugs, but it’s best to get diagnosed and find out what the real issue is. If my symptoms sound familiar, don’t wait to get tested and seek support!
- Wikipedia: Celiac disease. Everything you would ever want to know.
- Celiac.com. An excellent independent resource about Celiac disease.
- Trader Joe’s gluten free list (PDF). A complete list of every food at Trader Joe’s that is gluten-free. Very useful, and another reason why Trader Joe’s continues to get my business and support!