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!
Getting Tested
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!
Recommended Reading:
- 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!
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13. October 2009 at 11:45 am
Glad you finally have a diagnosis and can control the disease so easily. Gluten-free was unheard of a few years ago, and I’m amazed by the plethora of products now available.
I’m considering getting tested since I’m having some health concerns too. Nothing as bad as you, thank goodness, but still annoying and not easy to live with.
13. October 2009 at 11:47 am
Wow, Erica, you’ve had a pretty long and painful ordeal. I can’t imagine how good it feels to finally have an explanation, though!
Good luck with the new business plan and I’ll see you at UN7!
Paul
13. October 2009 at 11:49 am
Thanks for sharing your story — I’m glad you found out what was making you feel ill for so long! Like those Kaiser posters at the gym tell us, live well and thrive.
13. October 2009 at 12:02 pm
Congrats on the diagnosis! I promise, gluten-free gets easier as you get used to it.
And it sure beats the holy heck out of being sick all the time. (The story for me was malabsorption until I was down to 124 lbs as a full-grown male. Not good!)
For what it’s worth, our diet actually exploded in variety after going gluten-free because we could no longer rely on the meals we’d been making and eating for years. My wife ended up starting a food blog to share her gluten free recipes. If you’re interested, I’ll send you the url.
13. October 2009 at 12:02 pm
If you’re looking for some good gluten free cookies, check out http://www.theinspiredcookie.com. It’s run by my friend Sarah, and the cookies are amazing. I’m glad you figured out what was ailing you!
13. October 2009 at 12:16 pm
Erica,
I am so happy that you finally have a diagnosis. I know stressful it can be to know that something is wrong, but nobody can figure out why. Finding the plan to feel better is the hard part. Now you are on your way to recovery.
-Hawk
13. October 2009 at 12:24 pm
I’m so glad you got a diagnosis and are feeling better. Good for you.
We just did an article on this at the Argentimes. As many people here in Argentina are descended from Italians and Spaniards it’s fairly common here even though the diet here is *very* “beige”.
13. October 2009 at 2:07 pm
Any recommendations on how to find a nutritionist in a city where you don’t have a doctor yet at all? I’ve got some sort of food sensitivity that I haven’t tracked down.
13. October 2009 at 2:37 pm
I’m sorry to hear about your condition, a friend of mine has had CD for most of her life and has dealt with it well, although just went in for surgery.
This story has made me gain a great respect for you and all that you have done. It is wonderful to see that you have lived such a life of fulfillment all while taking on this problem. You are amazing.
13. October 2009 at 2:40 pm
Yeah, gluten free is expensive as h*ll. Too bad. I’m just a teeny bit sensitive to too much cheesy wheatiness (nothing after 8 pm please), but if I had reasonable alternatives, I’d avail myself.
Learning to cook won’t hurt you any. Everyone should know the basics… and everyone should have a signature meal! It’s a little like gardening: high value for the spirit.
Of course, everyone here is dying to know the answer to the obvious question nobody has asked… but I’ll pass too.
13. October 2009 at 4:34 pm
So if you went on a paleo diet, you would be gluten free right? Since going gluten free, have you had any change in body weight?
13. October 2009 at 7:01 pm
Erica-
After years of “living” I got diagnosed with Celiac Disease 5 years ago and finally feel “alive”!
Although the gluten-free diet can seem overwhelming at first, it will end up becoming the best thing for you and your body. And yes, it may seem, that gluten is “in everything” but it is also not in many, many foods…
My advise? Embrace the gluten-free diet, learn as much as you can, and respect and acknowledge how much better you feel!
Be Free!
A Fellow Celiac,
Kathleen
http://www.befreeforme.com
13. October 2009 at 11:35 pm
@Russ: Thanks — I already have some of those cookies, and they are pretty good. The best gluten-free snickerdoodles I have yet found!
@Mackenzie: I recommend asking for recommendations from practitioners you trust; massage therapists, acupuncturists, chiropractors, etc. may all be able to help you out. Or ask folks nearby, or email a local support group.
@Gordie: Yes, but I likes me some crackers.
I’ve only dropped about 3 pounds since going GF, but then again, it’s only been a bit over a month. I have dropped a pants size in the past few months since going low-carb and then GF.
-Erica
14. October 2009 at 1:54 am
Hi Erica,
Glad to hear you finally understand what is going on with your diet and your body.
As you alluded too, it is sad most doctors have no idea how much the food we consume affects our health.
As one wag has said, the total education a typical medical student gets on nutrition can be summed up in one sentence “don’t eat greasy fast food”.
The good thing is we can take control of our diet and make a difference. It is not just about feeling satisfied for the moment either…our diet affects both the quality and longevity of our life.
Well, now you have us all curious and waiting for what happens next:)
To your continued good health,
Stewart
14. October 2009 at 4:31 am
Hi Erica,
Thanks for sharing that very intimate story of what was going on with you. It is people like you that may help others having similar problems.
I’m so glad that you finally found out what was ailing you and now you are on the road to recovery…..wooohooo!
Not too many people are aware of CD and it certainly was a learning experience for me reading your story. I had only heard of it recently and did not know much about it.
So, for the question that is on everyone’s mind and afraid to ask….lol….how’s the sex life now? LOL…..sorry, I’m sure all is well in that department now and you can finally enjoy it!
Much love and God’s blessings to you dear as you recover fully!
Deb
14. October 2009 at 4:46 am
Hi Erica,
Do a white paper on it, follow that with a press release! People need to know this. Drug companies can make a huge profit on 1%.
14. October 2009 at 4:56 am
Hey Erica,
You are in our thoughts and prayers. Your story shared will help countless others. Thank you for sharing it. You were dynamite back in the Unseminar, I bet now you are going to be nuclear!
Hugs and love to you from me and Carol!
Twenty Twenty
That guy who really did change his name to the number of perfect vision, because YOU living YOUR VISION matters! Whoo yah!
14. October 2009 at 5:20 am
Glad you finally got a correct diagnosis, and yes, eating gluten free is extremely expensive and hard to get accustomed to at first. I’ve never been tested for gluten intolerance, but I have found since adapting a very low carbohydrate, whole food lifestyle that my energy is through the roof. Originally started it to lose weight (which I have), but the effects of feeling like a HUMAN again are some of the perks.
So glad you’re sharing your story with others- I hope it encourages them to demand better healthcare and to get tested, if they in fact, feel they have these same symptoms.
14. October 2009 at 6:28 am
Hi,
Sorry about your diagnosis. I was tested 79 for gluten intolerance from Enterolab and I have the HQ-3, 6 genes for celiac disease but I was just wondering..would you mind telling me your blood type? I am an A+. I’m researching any relevance with different blood types being more susceptible to celiac disease. Thank you.
14. October 2009 at 6:31 am
Though I am a little bit surprised at the doctors not knowing about Celiac Disease. One of my professors and one of my classmates have it.
14. October 2009 at 7:38 am
I am sorry to hear you went through all that suffering and frustration but thank God you will be feeling better and better now.
Best wishes for you from Costa Rica.
Elena
14. October 2009 at 7:52 am
Hi Erica
You are a strong willed person. You can overcome anything you choose to be the victor of.
Thanks for sharing
Quinn
14. October 2009 at 8:18 am
You’re an inspiration, Erica. It’s amazing what you have accomplished when you think about how little time you must have had because of all the sleeping, and I can imagine it’s been hard even when you were awake sometimes…
Wish you all the best!
14. October 2009 at 9:35 am
I’m so glad you got a diagnosis. I was diagnosed three years ago (the day after Thansksgiving) after nearly dying (all nutrients were just being flushed out of my system — at the time of my diagnosis there was no calcium or potassium left in me) and my world has really opened up!
I was happy with the diagnosis because it meant no pills, no surgery. In as little as 3 days of going GF, I felt so much stronger than I had in 15 years! Though the doctors say it takes about 3 years for your (my) small intestine to completely heal and I’ve had a few accidental setbacks…I’m still so much better now.
My husband is gluten-free now at home so there’s no cross-contamination for me.
It’s tough…but it’s worth it!
Best regards,
Leilani
14. October 2009 at 10:36 am
Erica,
May I recommend someone unconventional? Dr Alexandra Gayek quit the traditional MD practice because she felt the system was in business to keep you sick.
Anyway, you may find her interesting and maybe helpful. You can contact her via her website, http://www.scienceofgettingwell.net Tell her I said hi!
14. October 2009 at 11:24 am
I’m very sorry to hear of your problems and I genuinely hope you can find true health. But at the risk of sounding unkind, I’m going to suggest the root problem is spiritual and not physical.
Most people wouldn’t use a piece of equipment contrary to the instructional manual and expect that equipment to work properly or for the company to be sympathetic to them. Yet many abuse their bodies contrary to the manual (The Bible) and at the same time expect sympathy from God. God is merciful but breaking His rules has consequences.
According to Hebrews 13:4 ( http://bible.cc/hebrews/13-4.htm ), God views marriage as the only acceptable way to have sex. Further He pronounces a judgment on those who have sex outside the bounds of marriage. Also, I could point you to areas in the manual where it prohibits the use of a contraceptive pill. Therefore, your problem is primarily a spiritual one because you are ignoring God’s instructions for proper use of your body.
14. October 2009 at 11:31 am
Erica – Knowing is definitely half the battle, and like most here, I’ll agree that special diets like these get easier the longer you’re on them. I think you’ve seen me write about all my diet stuff before, so I know exactly where you’re coming from.
Oh, and check out tamari – it’s soy sauce made without wheat.
You might be able to have that.
-Sam (theButcher)
14. October 2009 at 11:55 am
Hi Benjamin,
Oh, damn! I’ve seen the light. You’re totally right.
I didn’t make the connection until you wrote this, but it’s true: I WAS pulled over for a carpool violation when I was 20 years old. I failed to properly understand the law as laid out in the California Driver’s Handbook, and was subsequently cited for a moving violation and asked to pay the $271 minimum fine.
But you’re right; that wasn’t enough, for the Big Hairy White Hand of the California Highway Patrol apparently saw fit to give me a disease for misuse of equipment contrary to the instruction manual. My $271 minimum atonement money was paid in vain, and I continue to suffer to this day for my sin of trying to get to work a bit faster. My selfish indulgence knows no bounds.
I will repent today, and ask the Big Hairy White Hand for forgiveness, and also for forgiveness for going 82mph in a 65, as I did a few days ago coming home from the airport. I shall definitely update this blog and let you know when I have been CURED.
Yours in sin,
-Erica
14. October 2009 at 12:03 pm
I’m so happy you found out what was causing all your illness. Now that you know you will thrive!
See you tomorrow
14. October 2009 at 12:18 pm
Please don’t take Buddy Ben up there as indicative of all of Christianity by any means. While most Christians may agree that sex is best saved for a marital relationship, it takes a special kind of moonbat to believe that that is the cause of Celiac Disease.
Meanwhile, the sane ones among us will pray for your improved health and well-being as you kick gluten in the butt. I understand how difficult it can be to find dietary alternatives as I went through it some with my wife when the docs thought that her health issues were Celiac related. Turns out that she came up negative for it and we’re looking at other potential causes. I hope it’s easier to find alternatives in So-Cal than it is in rural Central Kentucky.
Best,
– Loren
14. October 2009 at 12:48 pm
Dear friend.
Your words touched me, I know many cases like yours.
I have a granddaughter celiac seven years, was diagnosed at seventeen months. It was a pain until her diagnosis!
Encontarba always sick, sore throat, vomiting, otitis diarreasm, depleted hair, distended abdomen.
The doctors, not with the diagnosis were correct, they said that she had virus guard!
I, your grandmother, I saw that she was every day more sick, but thin, little by little, withered like a flower.
I was desperate, I started looking on the Internet, was quick! I saw a picture of a child “celiac” (I knew it was not celiac disease) with the same physical that my granddaughter.
The next day, talk to your pediatrician, he did analytical, biopsy and genetics, all positive
“The girl was celiac.
Now with seven years is a perfectly normal girl, healthy and happy
I spend much of my time to spread this disease, I call on governments celiac laws, medical protocols, gluten-free menus in schools, universities, workplaces, research cienificas …
The celiac has no borders, there are in any country!
Thank you for your wonderful work, I’m sure that would help spread this disease, sometimes as complicated diagnosis.
with affection
sonia
14. October 2009 at 3:44 pm
Erika,
It’s good to read that you’ve continued to nail down the details of your afflictions, so you can continue to actively address them.
I recommend this article from Scientific American to anyone who wants to learn more about Celiac Disease. http://www.scientificamerican.com/article.cfm?id=celiac-disease-insights .
/Gordon
14. October 2009 at 4:09 pm
Erica,
I think I know why you don’t feel well. It’s because you are a girl. Girls have cuties. Also, you have money. Cuties and money means Mother Earth hates you.
I suggest you stop making money and make sure to get your circle, circle, dot, dot cutie shot. This is the root of your problem…
OR…
Congrats on finally getting some answers. It must be a huge relief!
xoxoxo
Baker
14. October 2009 at 6:40 pm
Your article made me look up an article I read in Wired a while back written about a company that analyzes your DNA looking for genetic diseases, including Celiac Disease
http://www.wired.com/medtech/genetics/magazine/15-12/ff_genomics
http://www.23andme.com/
Hope you (or others reading this) find it useful.
14. October 2009 at 7:15 pm
Hi Erica,
You have been exposed to quite an ordeal. Sadly, you are not alone. Your experience is becoming epidemic among young people and among the elderly. Although the symptoms of Celiac Disease have been described in Greek and Egyptian texts we have only known that the cause was gluten since 1950. Celiac Disease is a specific manifestation of the overall issue of gluten sensitivity (about 10% of the issue) and is mainly related to gut damage, mal-digestion and mal-absorption of nutrients and the consequent deficiency diseases which spring from these conditions. Of equal and perhaps of greater concern are the other issues which spring from gluten sensitivity: the tiredness, lethargy, crankiness, moodiness, bloating, migraines, depression, mysterious muscular and skeletal aches and pains, A.D.D., Ataxia, eczema, mucus to mention but a few issues. It seems to affect both males and females almost equally, perhaps with a slight preponderance of females.
Dr. Rodney Ford, a Paediatrician, resident in Christchurch, New Zealand holds the view that over the next decade or so more than 30% of the population will adopt a gluten free diet due to gluten’s increasing implication in a range of chronic disease issues.
We have noticed that genetics play a critical role. A history of asthma, colic and overuse of anti-biotics may also contribute. We believe that our society is creating Celiacs through our increasing reliance upon wheat and gluten based fast/convenience foods in combination with declining fruit and vegetable consumption: by simple over exposure on a scale never previously experienced by mankind. Changes in bread making techniques have also played a hand in this process. Traditional breadmaking often took 8-10 hours compared to less than an hour today. In the traditional process many of the complex proteins etc were probably broken down to simpler, less toxic, more digestible forms.
Kindest regards,
Paul Smith
15. October 2009 at 2:25 am
You’ve had quite a health roller coaster, glad you finally got it figured out!
15. October 2009 at 11:19 am
And here’s another article, posted just this week, from a physician discussing how having a healthy gut is important to being happy and healthy.
http://www.huffingtonpost.com/dr-mark-hyman/is-your-digestive-system_b_313247.html
Erica, I’m glad you’re now aware of what’s been causing you to feel lousy, and you’ve taken charge of your health, and your life.
Cheers,
/Gordon
15. October 2009 at 1:14 pm
Erica, Thanks for writing about your very difficult and long journey to your diagnosis. I really appreciate your down to earth writing and videos, which have been helping me a lot! You are truly an inspiration.
15. October 2009 at 8:21 pm
I’ve never heard of this before. I’m glad you were able to find the problem and get it corrected! Eating gluten free sounds like a challenge in of itself.
16. October 2009 at 12:37 pm
Erica,
Congratulations on learning more about yourself. I definitely relate to the feeling of health problems that you can’t quite explain. I was diagnosed with Crohn’s disease over 2 years ago, and over 1 year ago I decided to ditch my meds and proclaim healing. I have been pain free for a year! Anyway.. Jealous that you were at the Pavlina seminar, and I really enjoyed reading about your story!
To all the above,
Eli
17. October 2009 at 6:46 am
Wow, it sounds just like my life story. It was determined just this year that I have Celiac Disease and I have been on the Gluten Free diet for around nine months. It’s a miracle diet for people with issues with gluten. It made me so mad that I had been misdiagnosed for so long (30 years) as IBS that I started the Mondaysceliac.com web site recently. If it could help just one person not suffer with the Gluten issues it would be worth it for me. I am now on your mailing list, following you on twitter, and just downloaded you ebook. Thanks again for the great blog post!
17. October 2009 at 2:56 pm
Hi Erica,
Congratulations on your diagnosis and finding an answer to your health problems. Several of my friends went on a low carb diet and discovered they felt immensely better, primarily due to cutting out wheat and other glutenous products. Many have found the cheapest way to deal with it is to take on an Asian-like diet. Sushi, rice pastas, peanut sauce, stirfries, etc., are all easy to make and inexpensively prepared. There are lots of flour based substitutes, but their texture and price seem to make most crave for the real thing. However, I have made very delicious flour free brownies before. Good luck!
20. October 2009 at 12:11 am
Thank you for sharing, I think I may have that as well as when you were describing sleeping for 10-12 hours & feeling tired always after eating I was like “wait I do that”. I always just thought I was lazy. At the very least now I know I am gluten sensitive, I am going to try to cut it out of my diet as much as possible & see the results.
Thanks again for sharing this it could change many peoples lives.
28. October 2009 at 1:07 am
Your story sounds alot like mine, except replace sleep with aching joints…
I’ve been on a gluten free diet for about a year now, it does get easier. I no longer crave chocolate muffins and can easily be in the same room with one…
In the beginning it seems as though you can’t have all the food you love, but you’ll find replacements. And you’ll discover a few of the gluten free options available are really good. Try them all, and covert the ones you like. Most (but not all) gluten free bread is just wrong and not worth the effort. Most cakes are ok. Muffins are 50/50. Most pasta is ok. Most bake at home products are good, but can do with an extra egg.
28. October 2009 at 1:16 pm
Hi,
you might want to check this with a genetics counsellor, but as far as I’m aware, Celiac Disease is autosomal recessive, meaning that your kids wouldn’t necessarily be at risk. Your future kids (or lack of) are of course, entirely your own business; don’t let your current condition rule them out altogether if you and your partner want to have them in future- you could talk about the odds/have your genes looked at to work out the inherent risk. I’m sure your physician could refer you to a genetics specialist at your local hospital for further discussion. My apologies if you’re already aware of this, and I’m glad that you’ve managed to have the condition diagnosed, and are managing it (as someone who has difficulty giving up fast food and coffee, I’m extremely impressed with people who can do this).
28. October 2009 at 5:28 pm
Hi Erika,
I have been gluten intolerant for years and accidently found out through an elimination diet my husband wanted to try. He had to eliminate 7 different food groups including gluten for 10 days. It was such a radical change in eating that I thought I better join him for moral support. After 3 days I felt like a new person. We gradually started re-introducing the foods and as soon as gluten returned so did my fatigue and bloating. He felt just fine and didn’t need to stop eating anything!
I have been eating gluten-free for 5 years. In restaurants I eat a lot of salads with sides of grilled meats or fish. You can’t even trust french fries anymore as they are often coated with flour these days. Soups are usually thickened with flour and your friends will be very frustrated at first when they invite you over. Did I mention that I lost 10 lbs in the first 2 weeks, it’s not all bad.
You will have to learn how to cook for sure. I don’t even bother trying gluten-free products that are supposed to be like bread, they are horrible. Some of the things that I use instead:
southern cornbread made from Joy of Cooking
rice pasta
rice crackers (with cheese, tuna salad, peanut butter, anything that used to be in a sandwich)
corn tortillas (in CA you probably can get them fresh from a store, but here (BC) it is really hard to find any that are chewable)
rice and corn are your best friends
ice cream is usually gluten-free depending on flavor
chocolate pudding, cheesecake without the crust
It is a fairly healthy diet, lots of meat and veg, and not many deserts. Good luck and let me know if you need some inspiration. Ethnic foods are often safe bets.
29. October 2009 at 7:02 am
Hello!
I was diagnosed with Celiac a little over a year ago. I had symptoms, that as an adolescent, just assumed it was stress-related or just part of growing up. I can recall feeling extremely tired, especially at specific times during the day, but never related my fatigue to anything I was doing. I am now on the gluten-free diet with an occasional slip-up. I can always tell when I have eaten something with gluten, whether it be by accident or from one of my many “crave-attacks.” I must say it feels wonderful to know that there is truly a diagnosis for why I had felt so awful over the previos years, and although there is no cure, I can be grateful that there is a treatment, and it is simply to change my diet….no drugs, surgery, chemotherapy, radiation, etc…..just a good knowledge of what I should and should not eat!!
I have many great recipes if anyone is interested.
Good luck to all my fellow celiac owners.
1. November 2009 at 11:21 am
Hey Erica, thanks for sharing your story — I think you are amazing to be sharing this very debilitating condition and still staying at the top of things. (I mean, you are so positive! That is great and will really help you thrive, in spite of everything!) At least you have the diet method of beating it, since pills and therapy, in this economy are hugely expensive anyway!
Anyway – good luck! And I feel sure you will continue to be hugely successful.
Warm wishes!
10. November 2009 at 11:12 am
I spent my 20′s/30′s in pain and diagnosed with an ulcer, for which i was on medication for 10 years. I spent my 40′s in pain and was told my gall bladder was the problem. I had it removed and then 6 ERCP’s to remove gall stones. The result? I was still in pain. Every 6 months i eliminated something from my diet because I knew I was ingesting something that was killing me. I just could not figure out what it was. Last year i learned about celiac from a relative who had it. Quit gluten and 3 days later felt 100% fine. Then took the test and tested positive for celiac. I’ve now been gluten free for a year and much prefer the gluten free food over the pain. Being gluten free has improved the quality of my life tenfold. Ironic that after all these years and doctors, it took a relative to help me unearth the mystery.
12. November 2009 at 9:35 am
Erica,
I originally wrote this on MvD but decided not to hijack his exciting news with such an unrelated long post! I am not a hardcore international traveler, but we don’t live in “the West” and do travel so I have some experience.
It is very hard to travel to non english speaking countries- this doesn’t mean you can’t, but realize you may well be eating basic staples. When we travel, I pack what I know I can eat- Thai Ramen, peanut butter, rice cakes, baby carrots, fruits and bars.
Even if I make myself extremely clear about gluten, I have no idea if the servers or chefs even have a clue what I am saying. “Yes ma’am” is a favorite saying. And there is always a huge huge huge huge huge cross contamination risk. They also don’t realize you have to check every single ingredient, and in some of these countries there is often no way to communicate with the company to get the gluten status. You can’t even have soft drinks, ketchup, or yogurt because you can’t know the ingredients are gluten free. There are little cards made for travel but I don’t think they are very effective. I think the hardest thing, though, is the cultural issue- it can be extremely offensive to turn people’s food down because I may get sick, esp since our sickness isn’t really something other people can see. I had a dear Indian friend once go to incredible trouble to cook gluten free food- but it was fried in oil that wasn’t gluten free! What to do?!? (I ate it.)
Anyway, moral of story is to always just plan on taking your own stuff and not eating out. IME it’s practically impossible to get people who aren’t 100% fluent in English to accommodate a gluten free diet (except in Western Europe). I’m sure there are a few specific regions where it wouldn’t be too challenging because gluten isn’t hugely prevalent in the diet.
Also- I am under the impression that you may pass the gene on to your kids (and even then I think they could get a recessive gene?) but you can have the gene but not the disease. Even though you have had the gene your whole life it’s probable you haven’t had the disease your whole life. I have thought about gene testing my kids to see if I need to keep antibody testing them every year- if they don’t have the gene they 99% won’t develop celiac- if they do have the gene, the MIGHT get it. Does this make sense?
Let me know if you have any questions- I used to live in the US and know all sorts of tricks and being gf in the US shouldn’t be terribly challenging. And my final word is to never accept a GF substitute that is not as good or better than it’s wheat counterpart! GF can taste GREAT. Good luck in your recovery.
My blood type is also A+
19. December 2009 at 9:32 am
Hey Erica, just introduced to you by David Risley. Great how trust agents work huh? It is so great to hear this health success story. My wife also suffers from different autoimmune disease,rheumatoid arthritis. She got a package deal with fibromyalia, and osteoarthritis so I understand your frustration with the medical community. They’re just doctors. Doctors are just now getting nutrition education along with there medicine.
I believe that we should do everything we can do before taking medicines that, although help, come with their own consequences, if not short term, definitely long term.
It’s good to hear another success story using nutrition as the cure. Although, I’m with you, I’d still like to find a cure. They are doing a lot of gene work these days, so perhaps that would be the place to start?
Recently, I was told that I’m borderline high cholesterol and they wanted me to take a staten drug which comes with side effects. I refused, after reading “The China Study” I began eating mostly plant based foods. I was only eating mostly chicken and fish anyway which I eat even now occasionally. I’ve never really looked into this “gluten free issue” until now.
Thanks for sharing your story. I’m finishing an eBook to give away for the launch of a new blog. I look forward to staying in touch and may hit you up for a story for my blog related to this health discovery. Just signed up by email for your updates etc.
To Your Health and Success,
Scott
26. December 2009 at 7:15 pm
Well, congratulations on at least finding out! It makes such a huge difference. I don’t have Celiac that I know of, but three years ago, through trial and error, I discovered that I have a gluten sensitivity. No doctor could tell me why I kept getting sinus infections. I don’t have to be incredibly diligent with avoiding it when it comes to flour in sauces, but I definitely don’t eat bread or pasta. My energy levels went through the roof when I went gluten-free, so I’m glad I discovered it.
22. January 2010 at 12:06 pm
Thank-you for posting about being diagnosed with Celiac Disease. I was diagnosed with Celiac almost a year ago at the age of 30.
I never would have been diagnosed based on my symptoms. I was only tested because a close relative was diagnosed after 15 years of deteriorating health and advanced osteoporosis at 48. I actually put off getting tested for several months, because I dreaded giving up so many foods. I kept a running mental checklist of each food I saw or ate that I would have to give up.
Slowly though, I became aware that something was not right with my body. I’d been hungry and tired my whole life. I was baffled by the energy other people seemed to have. I had assumed that the hollow pain in my stomach that used to keep my awake at nights was the standard background pain of existence. I used to equate the word hunger with looking at my hand to see if it was shaking from hypoglycemia.
By the time I walked out of the doctor’s office with the diagnosis, wheat was dead to me. I haven’t knowingly eaten anything containing gluten since, and I never will again. I live in a rural area with few shopping options, so I have to order most of my food over the internet. It’s expensive and inconvenient, but worth it.
I’m still getting used to (in a good way) feeling normal. It’s wonderful to have energy, to be able to work a full day, to notice as I fall asleep at night that I’m not in pain.
I regret though, that for 30 years of my life I had no idea, and I probably would have gone for decades longer had it not been for the suffering of my aunt.
Thank-you so much for raising awareness about this disease which so many people are suffering from needlessly.
10. February 2010 at 9:12 pm
The second info product I ever did was on Celiac Disease: http://www.gluten-answers.com.
11. February 2010 at 5:50 am
Hi Erica-
My mom found your blog after doing some research for me. I have alot of the same problems you were having and getting no where with doctors. I might try to cut the gluten in my diet or go with a complete gluten free diet to see if my symptoms changed. I am a very picky eater and was just curious if you could email me a small list of foods you may eat on a daily basis. Thank you for your time and im very glad we found your blog.
5. March 2010 at 6:54 pm
Thank you so much, you helped me with my research paper for school on Celiac Disease. Very interesting and my brother and sister have it too.!!!
6. March 2010 at 1:09 am
Hey Erica,
First time on the site. Your story is remarkably inspiring for a developing entrepreneur as myself.
I’ve also had digestive troubles throughout my life (although not as severe), and after trying EVERYthing, it turns out that eliminating grains (including rice, oats, quinoa), dairy, nightshades (potatoes, etc), and legumes (beans, peas, peanuts) clears up all the symptoms.
The idea is that, if we think in terms of human evolution, gluten intolerance may not have manifested as a “problem” until the last 0.1% of our existence: when the agricultural revolution began. Before that point, humans “in the wild” ate meat, vegetables, fruit, nuts, eggs, and fish.
During my transition to those foods, these resources helped immensely when I was still thinking about how to make substitutes of old foods: ThePaleoDiet.com, MarksDailyApple.com and PaleoDiet.com
Nowadays, I don’t even think about “non-paleo” foods. Cooking is easy: slap on a steak, cut the veggies while it’s cooking, add the veggies, add some spices, and you’re done.
Since switching, I’ve trimmed some fat (never overweight to begin with), gotten more lean muscle, stopped catching colds, and more focused without the carb-roller-coaster distraction.
Anyway, it might be too much to ask, but if you’re feeling optimistic and open to possibilities, hope you try it sometime and let me know how it works!
24. April 2010 at 5:46 pm
I learned about the Paleodiet 10-12 years ago and it was a revelation!
My whole family have diabetes and heart problems. When my 2nd brother went diabetec in the mid 70′s I had a glucose tolerance test. It came back that I was pre-diabetic. I immediately swore off sugar. Now I undestand I should have sworn off all carbs, not just sugar.
As a species, we never evolved to eat sugar, or carbs, including gluten. I had 2 heart attacks and a triple bypass at the age of 45. Both of my brothers died at the age of 33 from heart attacks, my Mom died at the age of 54 from multiple heart attacks.
Many of the health problems prevalent in our society stem from eating a diet that we aren’t yet evolved to eat. But the dieticians and doctors are, for the most part, unaware and unable to diagnose health problems from an evolutionary perspective.
Dr. Loren Cordain of Colorado State University is one of the experts in this field and has done decades of research. His website is http://www.thepaleodiet.com/
3. May 2010 at 7:01 pm
I wanted to share Elena’s Pantry http://www.elanaspantry.com with you, she bakes with almond flour and coconut flour. She avoids the gluten-free flour substitutes, using mostly natural ingredients. I am healing my own digestive issues with the GAPS diet http://www.gaps.me which has me off all grains and anything with gluten, anything processed… you definitely have to know/learn how to cook. Two weeks into the diet my feet stopped hurting (I had to wear these ugly men’s casual wear shoes they hurt so badly) and my back stopped stiffening up after being in bed 7 hours at night. It is so glorious to be able to sleep for 8-9 hours. And I’ve lost thirty pounds – I never started out to lose weight. One of my huge fears is that I would just keep gaining and gaining, so it is a relief to have this diet. I don’t know if I have a sensitivity to gluten but I never thought I could ever, ever give up pasta. It turns out it was a lot easier to do, I just had to give it up ALTOGETHER. Heh. I’m glad you finally found a “cure” for what has ailed you!
4. June 2010 at 5:53 am
So glad to read this post! I am glad you found an answer. I am having similar troubles and am also feeling anger towards Doctors:) I have a doc. appt this upcoming Monday. I am going to get this test. Thanks!
28. July 2010 at 4:55 pm
While searching for domain name advice, I came across this blog.
Hopefully your humming along in a good diet routine by now. I understand your pain personally as the symptoms are very common in America where the health-system and food supply is weak and greed-based. It’s been about 20 years for me. I was one of many in the first wave of food issues. Since you have a strong following and are sensitive to this topic, would you please pass this one important point along?
In fact,no one is designed to eat second and third generation plant-based AND animal-based products and never sugars,soy,poisons,antibiotics,molds,hormones, chemicals,pesticides,dyes,etc,etc. Dead,poisoned,genetically-changed food does not have the required code and enzymes for Humans(animals) or plants. So,although many people don’t know that they have growing eating-aversions inside of them, yet, technically everyone has celiac disease(“dis” “ease”)as well as many other dis-eases. Celiac,like Cancer,AIDS and Arthritis, it’s just another name agreed to by a group of people for a stage of malnourishment,inflammation,immune/hormone-malfunction,poisoning and decay. I’m very glad some of the mystery was unraveled for you, but I just want people to understand the truth about our bodies.We were never meant to thrive on low grade food and toxic poisons. The result is always the same if we continue to try. Please don’t feel left out of some special club because your body isn’t willing to get gunked-up anymore. You probably will liver happier and longer than most because your going in the direction everyone should be going. But isn’t that the way it always is. A few will be saved and many will perish. You’re really one of the fortunate ones. And your blog (and other businesses) are a success. If I can help in any way, let me know.
For helpful lists of “Hidden Ingedients” in foods and beauty supplies, search online for aliases of MSG, Soy, Aluminum, Formaldehyde, etc. or
read one of many Gloria Gilbere articles at the following link:
users.lmi.net/~wilworks/drgilbere/ggart12.htm
(Note: Since this article, Her contact info has changed to http://www.gloriagilbere.com)
and for more
go to http://www.dianajorossano.com or http://www.msgmyth.com/hidename.htm
BTW:I don’t know any of the (above) people or sites personally or professionally. I just found them online for you today.
Hope this helps.
Alisa Henry
The Good Home
10. August 2010 at 5:45 am
Looks like researchers found the cause of gluten sensitivity:
http://news.yahoo.com/s/livescience/20100721/sc_livescience/researcherspinpointcauseofglutenallergies