Scott Adams' Story of His Diagnosis of Celiac Disease

Hi there. I guess you've heard this time and time again, but your site is great! I too went through many, many years of mis-diagnosis - almost died. Turns out that at least 2/3 of my family have it also. Thanks for the site and the help. I'm still fighting symptoms and yes, I'm completely gluten-free but the docs say it may be possible that I have Celiac as a secondary disease.....but they still can't figure out the first.

Thanks again and wish me luck. I need a diagnosis and soon.

Catherine

Thank you so, so much for this incredibly helpful website! I was just diagnoses with celiac disease a few weeks ago, and as a newbie I'm relying heavily on your lists of safe vs. unsafe ingredients. Thank you, thank you, thank you!! :-)

Hi Jane,

I know this is a long shot that you will see this after so many years, but I too have Chiari and I am curious to know where you read something about the connection? I do not have the symptoms here personally, but my children & mother do. Please let me know if you changed your diet and how it affected your Chiari as well. I am just terrified of the surgeries. Thank You

After reading your story Scott I am convinced hat I now have an answer to my problems. I have suffered bloating pain in my right side and intermittent diarrhea for many years now. I am also lactose intolerant and so follow to the best of my ability that kind of diet, so when I next see my doctor in ten days time I will ask him to test me for it. Once again thank you Naomi Switzerland. PS Will keep you up to date on final diagnosis

This is exactly how I feel. I had the blood test on monday, still waiting for results. Thanks for your post.

It is a common misconception that celiac disease is only confined to the small intestines but it is not based on the seminar I attended in the past. If he's already having problems with digestion, most likely he's starting to have the signs and symptoms of gluten sensitivity. Celiac disease is the end stage of gluten sensitivity. There are also manual therapy techniques available and the one I use is called integrative manual therapy along with NAET (Nambudripad's Allergy Elimination Technique) which could help detect where the problem is coming from. Hope this helps answer some of your questions.

Don't wait to put on a gluten-free diet. Just do it. Whole foods before ordering a bunch of gluten-free stuff. Watch your spices and condiments. You will be glad you did as your son will feel much better. At least he got a diagnosis; just think of all the people out there who don't have one and are still suffering needlessly.

I have found this website very informative and helpful. I was diagnosed with celiac disease right before Christmas. I have been misdiagnosed with IBS for 10 years and finally my body gave up and I lost 30 lbs within 2 months. My new doctor finally took me serious and diagnosed me through blood tests and small intestine biopsy. I am eating gluten free and still having weight loss and still waking up sick every single day, hopefully they help soon. You website gave me a lot of new information. Thank you!

Great site

I am 47 started suffering terribly in 1993 and was just diagnosed in 2010. I am always interested in what people actually mean when they say adjust to the changes after diagnosis. Changing my diet was easy. As I figured it out I chose vegetables, fish, shrimp, bake, broil, steam, grill. What was difficult was handling the emotional side of all of the suffering I had endured. I needed a safe place to just talk. I needed someone to hear me about, not think I was crazy. I wanted to understand how all of these doctors could have failed me. I saw several psychiatrist who just offered me medication - wrong answer. Saw 3-4 therapist who basically thought I should get over it - wrong answer. The only comfort was God, my faith and my Bible. The celiac disease support groups help with food choices and lifestyle changes, but I have not been able to identify an emotional healing celiac support group in the United States. I met an addiction therapist who really understands the emotional toll suffering causes. Through treating celiac patients he has come to understand the need for emotional healing. The more we heal emotionally the better we are able to adjust to a new found opportunity for improved health. He is in the process of creating an emotional healing support group for celiacs. I hope that since 2009 you have received the emotional support that we all need and some help with lifestyle changes.

Hi Kathleen,
I was 68 when I finally got diagnosed six years ago. I never was too crazy about pasta, bread, and pastries, so I don't miss that, except for some good French or Italian bread now and then.
Actually, the gluten free diet is a really healthy one, as you can't eat much processed food. Lots of fresh fruits and veggies, brown rice and corn, lean meat, chicken and fish, and dairy products if you don't happen to be lactose intolerant. And even if you are, there are lactose free products or the pills you can take with dairy foods. I happen to LOVE Mexican food, so I'm in luck if I have to eat out. Just make sure there is no wheat in the tortillas or sauces.
As far as baking goes, I was really getting into turning out piles of Christmas cookies and treats for the family when I" had to go gluten-free, so there went the baking. However, the web is a great source of gluten-free recipes. I make a great lemon sponge cake that is a good substitute for the angel food cake I always loved. And if you live near a Trader Joe's, they have a good gluten-free ginger snap cookie and also reasonably priced mixes for brownies and maybe cookies. I also miss stuffing. I bought some self-rising corn meal and make cornbread, which I then use as the base for the traditional stuffing with onions. celery, sage. etc. It works for me!
Best of luck to you, and drop me a line and let me know how you're doing.

Regards,
Sally

I thank you so much for this website. I think it's terrific information for people with celiac disease

My friend had stomach problems for over 20 years! The doctors didn't know what was wrong with her. They wrongly diagnosed her for IBS. I now found this website and she has been tested for Celiac two days ago. The results should come in today. Wish her luck!

Good site...

Hi Scott, I contacted you in 1998 after receiving my diagnosis of being a celiac regarding gluten-free food and flours. I have been an avid reader since, and abstain from anything that could possibly have any gluten containing ingredients. I have regained my health after being diagnosed with IBS, gastroenteritis, duodenitis, anxiety, depression, had breast lumps removed, hysterectomy for massive bleeding, lipomas, and reactive arthritis reaction to antibiotics, lower back disc surgery ..... never did any physicians (even after colonoscopy for diarrhea) suggest celiac! Finally had diagnosis and it is truly amazing that I feel better than I have in my whole life since abstaining from gluten since 1998! The reason this is not better known is because there is no drug to advertise as a treatment, therefore no money to be made in pharma or medical world. Just imagine the evening commercials for a drug for celiac: " do you suffer from ...... ask your doctor if xxx is right for you!" All that is needed is abstaining from what is basically poison to your body. It's like NOT sprinkling a little ant poison on your food every day! Thanks so much! Cathy from CO

You hit the nail right on the head, big pharma. Rules! Time for them to get run out of town on a rail.

We are aware of the claim, the problem is that none have ever tested positive for gluten, and I challenge the other sites to produce such a test. Winemakers don't want gluten in their wine...would be a big mess.

I'm 59. I have been overweight all my life and developed type II diabetes in my 40s, but I keep good control. I always had occasional gastric issues, but nothing intense. I also have a long history of depression and am in treatment for it. In 2010 I got really physically sick literally overnight. 7 hospitalizations in 7 months and 2 major surgeries resulted in total colectomy later. I was told I would have routine diarrhea the rest of my life. Nobody ever mentioned the words gluten or celiac ever! 4 months ago, the daily movements intensified and began awakening me at night every hour or two. Just consulted a new gastroenterologist who gave me blood tests for celiac disease and bingo! Major positive results. Biopsy is scheduled. I am anxious, scared and I hate to admit it, but the depression is almost intolerable with the months of no real sleep. If you are the praying type, I'd appreciate a mention to the guy upstairs for me. Nothing else keeps me going. Thanks for the forum. Best wishes to all.

I am 21 years old. I was diagnosed with celiac disease about seven years ago. I was a moody, small, unhealthy little girl. For years I thought that feeling awful all the time was just a part of life. I learned to live with feeling weak and lightheaded all the time. It was later that I started to realize that everyone else didn't feel the same way that I did. That's when I started asking questions and opening up to my parents with things that I had previously thought were just facts of life. A couple of weeks later we figured out that I had celiac disease.
The only reason that I was diagnosed so quickly is because my grandma on my mom's side has celiac disease and went through similar terrible experiences with being diagnosed. I am so grateful that my diagnosis was not so drawn out and hard. Living the diet is another story entirely, however, and I'm afraid that I'm not very good at it.
I hope that being diagnosed gets easier. I know that I am very open with people about celiac disease in hopes to raise awareness. Thank you so much for this website!! It is a wonderful resource for a disease that can be hard to live with at times.

I am 21 years old. Three years ago, when I was 18 and a few months away from graduation, I had ultrasound down to check on my bladder... (I was having overactive issues and the urologist wanted to make sure there was nothing wrong with my bladder)....and we discovered that I had gallstones. I had begun to have digestive problems before we found out about the stones, so when I found out about them I thought that was what was causing it. Shortly after having my gallbladder removed abdominal pain and bloating as well as diarrhea after I ate. I went back to the doctor who did the surgery and he said that happen sometimes and put me on some medicine. The medicine worked for about half a year before it quit all together and the pain came back with a vengeance.
For the next two years I would visit my regular doctor and GI several times. The GI diagnosed me with IBS. He told me to cut fried and greasy foods out my diet and that would help some.
I never actually agreed that it was IBS but he was the doctor. A year and a half later and as my problems continued to persist. About 4 months ago I woke up to the worst pain in my upper abdomen and my heart seemed to be trying to beat out my chest, a few minutes later this was followed by diarrhea that would last for the next couple of hours. Unsure of what was going on my family took me to the ER. While there I was told I was severally dehydrated, which made no sense since I had drinking water through the whole night before falling asleep, and that my electrolytes were off. What got to me was that the doctors there didn't know what was going on either. One doctor asked me how i had been feeling leading up to this moment. So I told him about everything that had been going on. He told us he didn't believe I had IBS and that my GI probably only told me that because he wasn't sure what I had either.
I was kept at the hospital over night, my heart rate wouldn't drop past 150 till early in the morning, and then i was released with them telling me to see my regular doctor soon.
My appointment to see my regular doctor was suppose to be two weeks after leaving the hospital but she ended up seeing us four days after I came back home. When I tried to eat I ended up throwing up and this deep ache had settled into my muscles and joints. I think this is what finally made my regular doctor begin to suspect what was going on. She order some blood test done and a week later we got a call saying that I had a gluten intolerance.
A month into a gluten free diet and I could already tell the difference. So I then sat there and wondered why, for three years, I had to go all this pain and no one could get it right but my regular doctor. So I asked her when I went in for a checkup.
Turns out I would of been diagnosed sooner if I had went to her more instead of trying to deal with the pain on my own. Instead I either kept the problems to myself or went to the GI, who was convinced it was IBS. I was surprised to learn that my doctor has Celiac disease. When I finally gave a complete list of all the problems I had been having through out the last three years..from the pain to my fatigue, irritability, to the simple decline in my dental health..she knew what it was and had some test done it made sure.
She then told me to check out this site and I did. For the last few months this is where I've gone to find out what I should and shouldn't eat. Thank you. I'm still trying to figure everything out but at least this site gives me a good place to start.
Now for a quick question, how do you get over the looks people give you when you ask what on the menu is gluten free?

Thank you, your symptoms are mine, and I thought I was going mad with it. I am so scared to go out and eat, I don't bother. I seem to live on milky coffee 'just in case' whatever I eat will affect me!