Looking For Guidance

[Professor O]

I can relate to those of you who said that doctors were beginning to look at you as though you were crazy. I have been quite sick since February and held off going to the doctor for many weeks, thinking my symptoms would go away on their own. They only got worse until I was missing work and beginning to wonder if I was dying. I felt like I was slowly being poisoned to death. That's when I went to the doctor.

I'll get back to the doctor after I tell you my symptoms. They don't really match the classic celiac symptoms but the more I read, the more I realize that there is no one profile. Anyhow, my worst symptoms was feeling nauseated and just sick all over. I had a horrible feeling in my belly all the time. As I became more ill, I'd find myself panting or gasping for breath, especially upon rising or with the smallest exertion. I had sores in my mouth and on my tongue (that one is classic) but also had extreme tension in my face and jaw, causing headaches and earaches. The other one was extreme mouth dryness.

Back to the doctors. I went to my GP and she was clueless. She sent me to a gastroentrologist who set up an endoscopy--not to check for celiac, but to look around in my stomach for ulcers and what not. I asked him to please do a biopsy for celiac while he was probing around. I told him that I was sure the issue was food-related and that my sister, brother, two nephews and a niece all have celiac. He did not.

I became so ill that I had three emergency room visits within 2 weeks of the endoscopy. Emergency room visits always ended with EKGs, CT scans, chest xrays and associated bloodwork. I told them each time that the problem was abdominal and that my heart and lungs were just perfect. They had the previous tests to prove it. Suggestions ranged from psychotherapy to a pulmonologist. I'm glad I have good insurance because those visits were a huge waste of time and money.

So, I decided to begin a gluten-free diet without a diagnosis. I actually eliminated wheat, oats, rye, barley as well as dairy, condiments, vinegar, coffee, tea and soda. The latter foods were bothering me anyway. After about six weeks, I'm starting to feel better.

My tale of woe sounds a lot like those of other people who have posted. It sure would be nice to hear from people who might have some insight. I look forward to your posting.

[roxieb73]

I can relate to those of you who said that doctors were beginning to look at you as though you were crazy. I have been quite sick since February and held off going to the doctor for many weeks, thinking my symptoms would go away on their own. They only got worse until I was missing work and beginning to wonder if I was dying. I felt like I was slowly being poisoned to death. That's when I went to the doctor.

I'll get back to the doctor after I tell you my symptoms. They don't really match the classic celiac symptoms but the more I read, the more I realize that there is no one profile. Anyhow, my worst symptoms was feeling nauseated and just sick all over. I had a horrible feeling in my belly all the time. As I became more ill, I'd find myself panting or gasping for breath, especially upon rising or with the smallest exertion. I had sores in my mouth and on my tongue (that one is classic) but also had extreme tension in my face and jaw, causing headaches and earaches. The other one was extreme mouth dryness.

Back to the doctors. I went to my GP and she was clueless. She sent me to a gastroentrologist who set up an endoscopy--not to check for celiac, but to look around in my stomach for ulcers and what not. I asked him to please do a biopsy for celiac while he was probing around. I told him that I was sure the issue was food-related and that my sister, brother, two nephews and a niece all have celiac. He did not.

I became so ill that I had three emergency room visits within 2 weeks of the endoscopy. Emergency room visits always ended with EKGs, CT scans, chest xrays and associated bloodwork. I told them each time that the problem was abdominal and that my heart and lungs were just perfect. They had the previous tests to prove it. Suggestions ranged from psychotherapy to a pulmonologist. I'm glad I have good insurance because those visits were a huge waste of time and money.

So, I decided to begin a gluten-free diet without a diagnosis. I actually eliminated wheat, oats, rye, barley as well as dairy, condiments, vinegar, coffee, tea and soda. The latter foods were bothering me anyway. After about six weeks, I'm starting to feel better.

My tale of woe sounds a lot like those of other people who have posted. It sure would be nice to hear from people who might have some insight. I look forward to your posting.

You have a family history of Celiac and they won't test you? Time to fire your doctor and get a new one! The doctor works for you. People forget that. I work in a doctor's office and without patients they would not have a practice or a home. My doctor listens to me. All I have to do is ask and I get any test I want as long as it is reasonable. If it isn't he will explain why he thinks so. But I have never been denided a test... I mean what can it hurt. Worst case it is negative.

[ravenwoodglass]

You have that many relatives that are diagnosed and the doctor refused to even test! As the previous poster said you need to find a new doctor and write a letter to your doctor(s) and explain why. If they are part of a medical group you might even want to send copies of that letter to the head of the group.