I Think I Have Celiac Disease

[Travisevian]

Good afternoon! My name is Travis and I've recently registered here. For my entire life, I have suffered with health problems. In my early childhood, it was severe asthma and chronic infections, including pneumonia. As a teenager, I struggled with obesity and in my early twenties, I became underweight.

At the age of eighteen, I became ill during my second semester of college. Practically overnight, I was constantly fatigued and unable to concentrate. Mornings were horrible because of stomach cramps and motion sickness. (If I weren't a man, people would've thought I was pregnant!) It became increasingly difficult to awaken and I never felt refreshed. Sometimes, I'd have insomnia and not be able to sleep and other nights, I'd sleep for fourteen to sixteen hours. Migraine headaches became a problem and I felt moody and irritable, which was not like me. My mental acuity waned greatly and I developed brain fog that would last for six years. I'd had acne since puberty so my face(and body) was constantly breaking out. It was not pretty. Finally, one night, I just totally burned out, collapsed in my dorm room, just fell to the floor, the first of many hypoglycemic drop attacks. Several months later, an endocrinologist diagnosed me with hypoglycemia but doctors couldn't figure out what was wrong with me. At the age of twenty, I developed a mild stutter. I'd never stuttered in my life! What was happening to me? One doctor said I had allergies. Another said that I needed more sun. Others implied that I was clinically depressed and the last one I saw told me that I wasn't ill and to "get a life". Sound familiar?

Determined to get well and becoming discouraged with modern western medicine, I began reading about alternative medicine and thought that it could help my chronic fatigue and other ailments. Many of my symptoms were associated with celiac disease/gluten intolerance but I wasn't diagnosing myself. A gluten-free diet just seemed like a good idea. In the first few months, I began to notice some changes. My blood sugar was a little easier to maintain, whereas, before I'd gotten to the point that I had to eat every hour just to maintain. Then, I noticed that the brain fog I'd had for six years was subsiding and it became easier for me to collect my thoughts. To be newly articulate was wonderful. Finally, I began to incorporate a B-complex vitamin and it seemed to help, too. My acne was going away, too and for the first time since the age of ten, I had a completely clear complexion.

Unfortunately, I was still not regaining normal weight from the severe weight loss. Despite my weight gain, I appeared gaunt and malnourished, forearms like twigs and dark circles under my eyes. The weight didn't match my appearance. At 150 pounds or 165 pounds, I looked about 130 pounds. I'd always looked thinner than my actual weight but this time, it was not working to my advantage. So, I decided that the only way to regain some lean muscle mass and to look like myself again was to resume a diet with gluten. I'd needed to eat gluten again anyway for the celiac disease blood test. Since March, I've eaten foods with gluten and of course, many of my symptoms have returned. Fortunately, the brain fog hasn't returned but my face has once again broken out and my stomach is no longer flat. It's become difficult to gather my thoughts and I've felt myself getting worse by the day. Despite the fact that I've gained an additional fifteen pounds, my face is still gaunt. How can someone possibly be 5'9" and 185 pounds and look gaunt? It only seems possible to me if the person is suffering from malnutrition, which I believe I have. My blood test was negative, which I've heard can be possible, even with people that have the disease. I do have a parent with celiac disease and a family history of autism, diabetes and obesity, which have all been associated with this disease. As ill as I have been and the changes I noticed being gluten-free, it cannot be a coincidence.

I'm gradually weening myself off gluten and am eating more fruits and vegetables, brown rice, gluten-free breads. In addition, I'm taking a multivitamin daily. I think some physical therapy and proper diet will help me get well. All I want is a full face and a flat stomach and to be well, as I deserve to be. Hopefully, I'll be able to gain some insight here and I look forward to becoming acquainted with some of you all who can relate to my experiences. Thanks for reading.

[lucia]

Welcome to the board, Travis! Celiac is genetic so having a parent with it is a major clue. It sounds like you've been able to self-diagnose, and I'm glad to hear that you are feeling better off of gluten. I would still encourage you to talk to a doctor since there are so many associated risks with eating gluten for celiacs, such as vitamin deficiencies. Also, many of us deal with secondary autoimmune diseases. Even a doctor who doesn't know much about Celiac should be able to identify if you are malnutritioned. Generally though it takes awhile for people to feel better through diet, so I would expect you to keep feeling and looking better in the coming months.

[mushroom]

I agree with Lucia. Have your doc particularly check you for deficiencies in Vit. D (leads to osteoporosis), B12, folate, A and K, also calcium, magnesium, potassium, zinc, and also ferritin (iron deficiency is very common). All of these deficiencies can leave you feeling lethargic, depressed or worse and be the cause of many of the side effects you are suffering from your gluten intolerance.

Don't be put off! With your family history and your own history it is obvious that gluten is a problem and you need to be sure that all your bodily systems are functioning properly or you will not recover. If necessary, go to another doctor to get the testing if your current doc will not do it for you -- it is that important.

Good luck on making a full recovery to robust health. But be prepared that you may have to fight the medical establishment a bit to get there. Be persistent

[Travisevian]

Welcome to the board, Travis! Celiac is genetic so having a parent with it is a major clue. It sounds like you've been able to self-diagnose, and I'm glad to hear that you are feeling better off of gluten. I would still encourage you to talk to a doctor since there are so many associated risks with eating gluten for celiacs, such as vitamin deficiencies. Also, many of us deal with secondary autoimmune diseases. Even a doctor who doesn't know much about Celiac should be able to identify if you are malnutritioned. Generally though it takes awhile for people to feel better through diet, so I would expect you to keep feeling and looking better in the coming months.

Thanks for the welcome. I've talked to doctors but they refuse to listen. The last doctor who saw me compared people with celiac disease to starving children in Africa. He seemed unaware that many people with this disease can be overweight or of normal weight.

I agree with Lucia. Have your doc particularly check you for deficiencies in Vit. D (leads to osteoporosis), B12, folate, A and K, also calcium, magnesium, potassium, zinc, and also ferritin (iron deficiency is very common). All of these deficiencies can leave you feeling lethargic, depressed or worse and be the cause of many of the side effects you are suffering from your gluten intolerance.

Don't be put off! With your family history and your own history it is obvious that gluten is a problem and you need to be sure that all your bodily systems are functioning properly or you will not recover. If necessary, go to another doctor to get the testing if your current doc will not do it for you -- it is that important.

Good luck on making a full recovery to robust health. But be prepared that you may have to fight the medical establishment a bit to get there. Be persistent

My former physician wouldn't order that much blood work. He would order CBC's but I didn't even realize there are tests for vitamin A and vitamin K. I had an additional test for folate and B12. A few years ago, I had a vitamin B12 deficiency and have been taking a sublingual form regularly, which made my B12 levels unusually high. He told me to stop taking the supplement all together, which I thought was extreme. My vitamin D levels were also checked and were low. I've been getting a little more sun and have been taking vitamin D through supplements.

As I don't have health insurance and am in a rural area, finding a doctor is very difficult. When I wasted away to 120 pounds a couple of years ago, the doctors didn't even evaluate me for an eating disorder! Many people in my area still believe that only women have eating disorders. Indeed, my diet had become too restrictive, as I took my organic diet to an extreme and my body began to reject certain foods, especially meat and poultry. For a long time, I was living off of beans and rice, whole grain cereal with soy milk and peanut butter and crackers, not well-balanced. I'd also been ill with influenza and lost my appetite. Undoubtedly, this contributed to my severe weight loss but I still think that gluten is a factor. Nevertheless, I'm a very stubborn guy and am determined to get well. Somehow, I'll find a doctor who can help me. Thank you.

[Skylark]

I'm gradually weening myself off gluten and am eating more fruits and vegetables, brown rice, gluten-free breads. In addition, I'm taking a multivitamin daily. I think some physical therapy and proper diet will help me get well. All I want is a full face and a flat stomach and to be well, as I deserve to be. Hopefully, I'll be able to gain some insight here and I look forward to becoming acquainted with some of you all who can relate to my experiences. Thanks for reading.

Welcome! You seem to fit right in here. I think, given the trouble you're having finding a sympathetic doctor, that simply going gluten-free makes a lot of sense. The genetics are pretty strong, and a lot of people with a celiac parent find that they do not tolerate gluten very well.

Do make sure you're removing all the gluten, including hidden gluten in things like soy sauce and commercial broths. There are lots of resources about the diet on celiac.com.

Good luck, and I hope it helps.

[lucia]

Thanks for the welcome. I've talked to doctors but they refuse to listen. The last doctor who saw me compared people with celiac disease to starving children in Africa. He seemed unaware that many people with this disease can be overweight or of normal weight.

Argh! The medical community's ignorance about celiac is so frustrating!!! According to the Celiac Center at Columbia, it takes a celiac 9 years on average to be diagnosed in the U.S. Many of us on the board have similar stories to yours. Being stubborn will serve you well!

That you don't have health insurance brings up a whole other problem with the American medical system ... ! But I digress. I agree with Skylark: the good news about this disease/condition is that you don't need a doctor to prescribe a gluten-free diet for you.