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Dr. Says I Don't Have Celiac

Katerific

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Katerific Explorer
Katerific
Posted

I went to see a gastroenterologist for heartburn and gave my history as having Celiac. I explained my Mom has it, my sister has it and I self-diagnosed after having constipation my whole life. He told me that I don't have celiac but if it makes me feel better to not eat gluten, then OK. He meant mentally feel better. I have been totally gluten free for 1 1/2 years and have never felt better, until this morning. Last night we went to a dinner party and along came cheesecake for dessert. Thinking that I should test the doctor's theory, I scraped off the cheesecake from the crust, but I know I got a few crumbs. Today I have had the worst diarrhea ever. I am certain I am clean enough for a colonoscopy! Well, at least I don't feel stupid for self-diagnosing. I have noticed how less and less amounts of gluten cause stronger reactions as time goes by being gluten-free.

Teresa

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GeoffCJ Enthusiast
GeoffCJ
Posted
I went to see a gastroenterologist for heartburn and gave my history as having Celiac. I explained my Mom has it, my sister has it and I self-diagnosed after having constipation my whole life. He told me that I don't have celiac but if it makes me feel better to not eat gluten, then OK. He meant mentally feel better. I have been totally gluten free for 1 1/2 years and have never felt better, until this morning. Last night we went to a dinner party and along came cheesecake for dessert. Thinking that I should test the doctor's theory, I scraped off the cheesecake from the crust, but I know I got a few crumbs. Today I have had the worst diarrhea ever. I am certain I am clean enough for a colonoscopy! Well, at least I don't feel stupid for self-diagnosing. I have noticed how less and less amounts of gluten cause stronger reactions as time goes by being gluten-free.

Teresa

On what basis did you say he don't have Celiacs? I mean, why does he think you don't?

Katerific Explorer
Katerific
Posted
  • Author
On what basis did you say he don't have Celiacs? I mean, why does he think you don't?

He and my family doctor think that Celiacs only have diarrhea. I tell them that the chronic constipation was my problem.

Lisa Mentor
Lisa
Posted

Teresa:

I am sorry that you are feeling bad today.

Some times we just have to listen to our own bodies, no matter what others tell us.

You might not have celiac, which is indicated by the flattening of the villi in the small intestings. I am sure that you know that. You may have a gluten sensitivity, which is corrected with the same diet.

I too have found that the longer I am gluten free, the more sensitive I am to gluten, where as, I may not have been in the past.

This too shall pass, in the most literal way. :rolleyes:

jerseyangel Proficient
jerseyangel
Posted

Teresa,

I'm sorry to say that your doctor can not say you don't have Celiac by just looking at you--and he's wrong--constipation is also a common symptom.

Katerific Explorer
Katerific
Posted
  • Author
Some times we just have to listen to our own bodies, no matter what others tell us.

You might not have celiac, which is indicated by the flattening of the villi in the small intestings. I am sure that you know that. You may have a gluten sensitivity, wish is corrected with the same diet.

He did explain the difference between Celiac and gluten sensitivity. I guess in my mind I didn't think that gluten sensitivity would cause such an "explosive" reaction today when I used to eat gluten by the basket-full without getting diarrhea. My Mom did have totally flattened villi and since I inherited all her other characteristics, maybe this too.

I really do like this doctor. He took time and explained what I needed to know about the heartburn. I will listen to my body when it comes to eating gluten.

Teresa

Lisa Mentor
Lisa
Posted
Teresa:

I am sorry that you are feeling bad today.

Some times we just have to listen to our own bodies, no matter what others tell us.

You might not have celiac, which is indicated by the flattening of the villi in the small intestings. I am sure that you know that. You may have a gluten sensitivity, which is corrected with the same diet.

I too have found that the longer I am gluten free, the more sensitive I am to gluten, where as, I may not have been in the past.

This too shall pass, in the most literal way. :rolleyes:

OOps, I missed the self-diognosed information. Thank you Patti.

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Carriefaith Enthusiast
Carriefaith
Posted

I'm sorry you got sick, that is no fun :(

The doctor did not have any evidence to back up his assumption. He should have pursued a gene test for you since any other tests could be false negative. Regardless, your dietary test was positive and celiac disease runs in your family. I would say that your chances of having celiac disease are high.

Ursa Major Collaborator
Ursa Major
Posted

Carrie is right. With a mother who has celiac disease, and you having obvious symptoms, you are more likely than not to have celiac disease as well, no matter what the doctor says. Good for you for standing your ground. My doctor didn't think I could have celiac disease either, her ONLY reason being, that I wasn't losing weight (I had all the other symptoms, including diarrhea). Your doctor is misinformed. Ignore him.

CMCM Rising Star
CMCM
Posted

Teresa....my doctor did the usual celiac blood test on me and also said I don't have it. Maybe I don't, but my mother most definitely has it. My symptoms weren't classic like my mom's....I didn't lose weight, and I didn't get violently ill from it, but I was still sick a lot with all sorts of digestive woes and D, sometimes C, sometimes dizziness, sometimes nausea,....just all over the board. I finally got the full panel of tests at Enterolab, including a gene test, which showed I have one celiac gene and one gluten sensitivity gene. Since I didn't test high for malabsorption but I did test positive for the autoimmune reactions, Dr. Fine at Enterolab said either way, celiac or gluten sensitive, I should never eat gluten.

The medical community in general, and most certainly YOUR doctor in particular, is very very VERY undereducated about celiac disease and gluten sensitivity. What they know about it would fit on the head of a pin, frankly.

With your family history, your likelihood of having either celiac OR gluten sensitivity is extremely high given your observable symptoms. If you don't want to spend the $$ on the Enterolab testing, I'd suggest proceeding with the gluten free diet and see how you feel. Basically, that will tell you what you need to know. If you feel better within a few weeks, you've got your answer.

Don't take your doctor's pronouncement as the gospel truth. Do some reading on celiac disease and you'll know vastly more than he does! :P

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      ttg iga high (646 mg/dl) other results are normal

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