Two Tests Two Diff Results!

[Rosewynde]

I've had flu like symptoms (gas pains, diareah, fatigue, dehydration) for the last few months. My doctor checked a few things and sent me to a specialist who checked a few more. I started avoiding gluten on my own when the doctor told me that was the next set of tests (the doctor said it wouldn't affect the tests). The most recent results were a blood test for the antibodies associated with Celiac's that came back positive. The doctor then did an endoscopy with biopsy that came back negative (showing no signs of degradation). The doctor said he couldn't get very far down in my small intestine to take the sample. He wanted to do a pill capsule endoscopy to take pictures all the way down and look for flattened cilia but my insurance refuses to pay.

I'm pretty sure it's Celiac's Disease as I've had stomach problems for years all centered around stressful situations with the exception of this last one. I've even had my gal bladder removed due to massive stones and major burning stomach attacks. I've been great for the last four years after that operation but horrible for the last three months. I started feeling better within a week of stopping eating bread and crackers along with the rest of my BRAT diet (Bananas rice applesauce and toast). The only awful time since came right after inadvertently tasting oatmeal cookie dough i was making for my kids. I felt awful for a day and then recovered and was back to fairly normal within a week. So which test do I believe? The bloodwork, the Endescopy, my own results from removing gluten from my diet? Should I fight the insurance on the pill capsule thing or just leave myself not "Officially Diagnosed"? Will the insurance refuse to cover the dietitian too because the test results are opposites?

I don't have a family history of it but my mom and her mom have always had stomach problems. Supposedly my Great Great Grandma on that side was only able to eat meat, vegetables, and rice or she had stomach problems. I'm sure they couldn't diagnose it back then ; D What do I do? Should I worry about my kids?

[Lisa]

I've had flu like symptoms (gas pains, diareah, fatigue, dehydration) for the last few months. My doctor checked a few things and sent me to a specialist who checked a few more. I started avoiding gluten on my own when the doctor told me that was the next set of tests (the doctor said it wouldn't affect the tests). The most recent results were a blood test for the antibodies associated with Celiac's that came back positive. The doctor then did an endoscopy with biopsy that came back negative (showing no signs of degradation). The doctor said he couldn't get very far down in my small intestine to take the sample. He wanted to do a pill capsule endoscopy to take pictures all the way down and look for flattened cilia but my insurance refuses to pay.

I'm pretty sure it's Celiac's Disease as I've had stomach problems for years all centered around stressful situations with the exception of this last one. I've even had my gal bladder removed due to massive stones and major burning stomach attacks. I've been great for the last four years after that operation but horrible for the last three months. I started feeling better within a week of stopping eating bread and crackers along with the rest of my BRAT diet (Bananas rice applesauce and toast). The only awful time since came right after inadvertently tasting oatmeal cookie dough i was making for my kids. I felt awful for a day and then recovered and was back to fairly normal within a week. So which test do I believe? The bloodwork, the Endescopy, my own results from removing gluten from my diet? Should I fight the insurance on the pill capsule thing or just leave myself not "Officially Diagnosed"? Will the insurance refuse to cover the dietitian too because the test results are opposites?

I don't have a family history of it but my mom and her mom have always had stomach problems. Supposedly my Great Great Grandma on that side was only able to eat meat, vegetables, and rice or she had stomach problems. I'm sure they couldn't diagnose it back then ; D What do I do? Should I worry about my kids?

I will try to reply. My hardrive it trying to blow up at the moment,..

To make this simple, with a possitive blood test, YOU HAVE CELIAC. No ifs about it. There is not need for further testing. Dietary funds are not needed with these good folks. You can get all of your answers here.

Welcome to the Club.

On the Gluten Free Diet, the BRAT diet consists of Banana, Rice, Apple Sauce and TEA.

[par18]

I've had flu like symptoms (gas pains, diareah, fatigue, dehydration) for the last few months. My doctor checked a few things and sent me to a specialist who checked a few more. I started avoiding gluten on my own when the doctor told me that was the next set of tests (the doctor said it wouldn't affect the tests). The most recent results were a blood test for the antibodies associated with Celiac's that came back positive. The doctor then did an endoscopy with biopsy that came back negative (showing no signs of degradation). The doctor said he couldn't get very far down in my small intestine to take the sample. He wanted to do a pill capsule endoscopy to take pictures all the way down and look for flattened cilia but my insurance refuses to pay.

I'm pretty sure it's Celiac's Disease as I've had stomach problems for years all centered around stressful situations with the exception of this last one. I've even had my gal bladder removed due to massive stones and major burning stomach attacks. I've been great for the last four years after that operation but horrible for the last three months. I started feeling better within a week of stopping eating bread and crackers along with the rest of my BRAT diet (Bananas rice applesauce and toast). The only awful time since came right after inadvertently tasting oatmeal cookie dough i was making for my kids. I felt awful for a day and then recovered and was back to fairly normal within a week. So which test do I believe? The bloodwork, the Endescopy, my own results from removing gluten from my diet? Should I fight the insurance on the pill capsule thing or just leave myself not "Officially Diagnosed"? Will the insurance refuse to cover the dietitian too because the test results are opposites?

I don't have a family history of it but my mom and her mom have always had stomach problems. Supposedly my Great Great Grandma on that side was only able to eat meat, vegetables, and rice or she had stomach problems. I'm sure they couldn't diagnose it back then ; D What do I do? Should I worry about my kids?

The only test I feel that matters is the diet response. If excluding gluten makes you feel better then why waste any more money on testing. If you continue to get negative results on the testing but can only find relief going gluten free then what are you going to do. You can call it what you want. None one in my family had any history of Celiac but that was exactly what I have. I only wish I had the knowledge so that I might have tried the diet before I got really ill. Don't expect to get much help from the insurance companies as they probably know as much as the average doctor. Listen to your body and I wouldn't say don't worry about your kids but just try to see if any of them have issues after eating. Basically people can find out if they have problems with certain foods just by process of elimination. It just so happens some of the things that affect us are given names like Celiac Disease. In order to get that "tag" one will have to spend money. To me it is not any different than lactose intolerant or wheat allergy or peanut allergy or anything else. I just avoid that which bothers me and get on with my life. That "positive diagnosis" I got and a dollar will get me a cup of coffee just like everyone else. Hope this helps.

Tom

[blueeyedmanda]

I too feel the dietary response is one of the truest tests you can ever do. There are many on this board who have had negative blood tests but positive changes once going on the diet.

[Rosewynde]

Thanks Everyone,

I guess I trust the original blood test and my own dietary responses then. I'm just afraid of getting told it's IBS caused by stress again, which makes no sence as I wasn't feeling stressed when this happened again.

I know i shouldn't worry about the kids, it's just hard not too. I don't want to see them go through what I've been through.

I guess I should switch over to the "dealing with" forum for my other questions about some of the things I've seen you guys say you have to avoid.

[Betty in Texas]

Thanks Everyone,

I guess I trust the original blood test and my own dietary responses then. I'm just afraid of getting told it's IBS caused by stress again, which makes no sence as I wasn't feeling stressed when this happened again.

I know i shouldn't worry about the kids, it's just hard not too. I don't want to see them go through what I've been through.

I guess I should switch over to the "dealing with" forum for my other questions about some of the things I've seen you guys say you have to avoid.

[Betty in Texas]

I had the same symptoms as you thought I had the flu for about 3 months and could''t get better but I was one of the lucky one's, never heard of this disease and he ran the scope and this is what it was. He said it may take up to 5 years before I could be in the clear and I am 90 % better but still have issues and it has been 4 years I still have bloating not much gas but have a lot of acid reflux when I get glutened. Our bodies is like a high tech machine you feed it something it don't want it will let you know real quick and our bodies are smarter than a lot of drs. so listen to your body it will talk to you good luck