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Not A Good Day At The Hospital And Feel So Lost Now.

Dellers

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Dellers Apprentice
Dellers
Posted

I went to the hospital for my results today. It is not celiac but gluten intolerance what ever that means. So basically I have Ibs. All my results were normal and with my symptoms they could have expected to diagnose me with celiac. Doctor was very rude and had me in tears. He was not even the doctor I was talking to about my symptoms. He only came into the room to show the other dr how to use the computer. I just feel so lost at the moment.

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shopgirl Contributor
shopgirl
Posted

It's frustrating not getting answers but don't give up looking if you feel there really is something there. I spent months and months going to doctors and getting tests, constantly hoping something, anything would come back positive to explain my symptoms. I went to doctors who dismissed me, insisted it was in my head, one who even laughed at me, until I finally got the Celiac diagnosis. So cry it out, get someone you love to give you a hug, and then keep going.

And there's no one who says you can't try going gluten-free to see if it improves your symptoms. Tests are infallible and doctor's most certainly are too.

Dellers Apprentice
Dellers
Posted
  • Author

It's frustrating not getting answers but don't give up looking if you feel there really is something there. I spent months and months going to doctors and getting tests, constantly hoping something, anything would come back positive to explain my symptoms. I went to doctors who dismissed me, insisted it was in my head, one who even laughed at me, until I finally got the Celiac diagnosis. So cry it out, get someone you love to give you a hug, and then keep going.

And there's no one who says you can't try going gluten-free to see if it improves your symptoms. Tests are infallible and doctor's most certainly are too.

Thank you. I have been on a gluten free diet and even the shakes in my hand and hip pain has improved.

ravenwoodglass Mentor
ravenwoodglass
Posted

Thank you. I have been on a gluten free diet and even the shakes in my hand and hip pain has improved.

I'm sorry you had such a bad experience. Unfortunately it isn't uncommon. Stay on the diet strictly for at least a couple months. The testing for celiac leaves a lot to be desired and it misses up to 30% of us. If you have had the biopsies get on the diet full force now. If you haven't had biopsies then wait to start the diet until those are done. If you went gluten free or gluten light before the testing that in itself will cause a false negative.

Dellers Apprentice
Dellers
Posted
  • Author

I'm sorry you had such a bad experience. Unfortunately it isn't uncommon. Stay on the diet strictly for at least a couple months. The testing for celiac leaves a lot to be desired and it misses up to 30% of us. If you have had the biopsies get on the diet full force now. If you haven't had biopsies then wait to start the diet until those are done. If you went gluten free or gluten light before the testing that in itself will cause a false negative.

Hi raven. I have had the biopsies done they got one sample as I was intolerant to the procedure . That came back fine also I explain to them that I only had been on the challenge for less than two weeks before having that done and that I was on a very strict gluten-free diet for 10 months. Today she took a DNA test ?? and she is going an ESR test and a total IgA IgG as my IgA is 0.4 ( I think that is Iga deficient )

Mari Contributor
Mari
Posted

You can call and have the lab tests results sent to you. If you post them here we can help you understand the results and tell if you had the necesary tests to rule out celiac disease.

This website will help you understand many of the problems caused by gluten.

Introduction - The Gluten Syndrome, GlutenSensitivity, Gluten ...

The Gluten Syndrome.net. top. Patient perspectives on gluten grain intolerances and sensitivities . including the celiac disease subset,

theglutensyndrome.net

ravenwoodglass Mentor
ravenwoodglass
Posted

Hi raven. I have had the biopsies done they got one sample as I was intolerant to the procedure . That came back fine also I explain to them that I only had been on the challenge for less than two weeks before having that done and that I was on a very strict gluten-free diet for 10 months. Today she took a DNA test ?? and she is going an ESR test and a total IgA IgG as my IgA is 0.4 ( I think that is Iga deficient )

If you were gluten free for 10 months and only did a two week challenge chances are your tests are going to be negative whether you are celiac or not. Do not use the DNA test as a for sure that you are or are not celiac. Many times they only test for 2 of the associated genes and not the other 7 or possibly more that are also associated with celiac. How did your body react to the challenge? If you got a reoccurance of your symptoms on the challenge you should go back to the gluten free diet. If the diet helps your issues it is the thing to do no matter what the test results say.

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Emilushka Contributor
Emilushka
Posted

I'm sorry the doc was mean to you. That really sucks.

I don't have new info to add, just wanted to add my support.

Dellers Apprentice
Dellers
Posted
  • Author

If you were gluten free for 10 months and only did a two week challenge chances are your tests are going to be negative whether you are celiac or not. Do not use the DNA test as a for sure that you are or are not celiac. Many times they only test for 2 of the associated genes and not the other 7 or possibly more that are also associated with celiac. How did your body react to the challenge? If you got a reoccurance of your symptoms on the challenge you should go back to the gluten free diet. If the diet helps your issues it is the thing to do no matter what the test results say.

On the challenge I was very sick with stomach cramps, loose watery fatty stools,mucus, Urgency, tasting sick in my mouth also very tired. I have had no communication from my doctors so I didn't know I had to eat gluten until I found this forum. Also my joint pain has returned in my hips and my hand is still getting the shakes. Being gluten-free has cleared all these symptoms up for me. It took a while but I am not eating imodium instants like there candy. I had more ESR tests done yesterday as my last ones were in the 80-90 range. This could have been down to pregnancy as it is not associated with celiac. The doctor was concerned in my family there is a history of bowel cancer. I recently had a aunt pass away aged 41 so I am being reffered for a coloscopy. after doing the challenge my hair has been falling out a lot more than usual.

Dellers Apprentice
Dellers
Posted
  • Author

I'm sorry the doc was mean to you. That really sucks.

I don't have new info to add, just wanted to add my support.

Thank you sometimes a hug and support is all we need. I have never met a Doctor so rude in my life. He said "If gluten is your problem so you say ! what do you want me to do about it to help you " and then had a go at my husband about gluten is in wheat in the bread so that would effect me also but my husband informed him that I have been eating glutafin bread. I didnt even listen to half of it I was sobbing so much :)

gf-soph Apprentice
gf-soph
Posted

Thank you sometimes a hug and support is all we need. I have never met a Doctor so rude in my life. He said "If gluten is your problem so you say ! what do you want me to do about it to help you " and then had a go at my husband about gluten is in wheat in the bread so that would effect me also but my husband informed him that I have been eating glutafin bread. I didnt even listen to half of it I was sobbing so much :)

I would seriously consider making a complaint with a dr like that. I think a lot of terrible drs get away with treating patients like dirt as sick people aren't likely to have the energy to complain. This dr is a jerk and he doesn't know what he's talking about.

If you hadn't done your own research you might believe him, and you would continue to be sick. I was unlucky enough to see a gastro who told me that with positive blood tests there was no way that gluten was my problem. I was sick for another year eating gluten before I found out the truth. I'm glad you know better, but how many of his other patients won't? Either way, I'm glad the experience is over and that you had someone to help you though it.

  • 2 weeks later...
Dellers Apprentice
Dellers
Posted
  • Author

Finally some good news I got a letter today and with my symptoms I have been reffered to a dietitian.

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