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Help Do I Have Celiac

charmaine broxton

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charmaine broxton Newbie
charmaine broxton
Posted
:( I'm so fed up. I had the blood test for celiac but it came back negative however when I eat anything with wheat or barley in I swell up like a pregnant lady. I get very tired and very depressed. I sometimes get sore bones and I go to the toilet a lot. My doctor said he's not going to send me for the biopsy as the blood was negative. Please can anyone help i'm so fed up and I can't get out of this viscious circle. Help! Charmaine.x :(
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Mango04 Enthusiast
Mango04
Posted

Hi - :)

You could definitely have celiac or gluten intolerance. If you know you feel better on a gluten-free diet, then go gluten-free! The test results could be wrong. You can simply eliminate gluten from your diet, and see how you feel. Or, if you'd like to pursue further testing, you might look into something such as Enterolab.

PS - I don't have any positive test results either - just a positive gene test. Sometimes experimenting with your diet is the best way to go.

Ursa Major Collaborator
Ursa Major
Posted

Hi Charmaine, and welcome to this board. It sounds very much like you may at least be gluten intolerant. If you want official testing done, have it done by Enterolab if you can afford it. Open Original Shared Link

It's not cheap, but accurate, painless and would give you the answers you need. Since you don't have to be on gluten when doing their test (it's a stool test), I suggest you simply go on the gluten-free diet, to see if it helps you feel better. The diet really is the ultimate test, not the biopsy (even though that's what the ignorant doctors would like you to believe).

judy05 Apprentice
judy05
Posted
:( I'm so fed up. I had the blood test for celiac but it came back negative however when I eat anything with wheat or barley in I swell up like a pregnant lady. I get very tired and very depressed. I sometimes get sore bones and I go to the toilet a lot. My doctor said he's not going to send me for the biopsy as the blood was negative. Please can anyone help i'm so fed up and I can't get out of this viscious circle. Help! Charmaine.x :(

I had a negative biopsy and negative gene test. I was positive on one blood test ( IGA) which dropped when I went gluten free. My doctor insists that I can eat both wheat and dairy. We went round and round on this, it is my body and I know what I can eat and what I can't. That's why I don't see him anymore. I am gluten intolerant and you could be too.

par18 Apprentice
par18
Posted
Hi - :)

You could definitely have celiac or gluten intolerance. If you know you feel better on a gluten-free diet, then go gluten-free! The test results could be wrong. You can simply eliminate gluten from your diet, and see how you feel. Or, if you'd like to pursue further testing, you might look into something such as Enterolab.

PS - I don't have any positive test results either - just a positive gene test. Sometimes experimenting with your diet is the best way to go.

Could not have said it any better.

Tom

AndreaB Contributor
AndreaB
Posted

If you can swing it I would also recommend enterolab. I had our family done after my allergy tests came back with moderate wheat/gluten/gliadin/soy allergies. Out of the 4 of us that got tested 3 of us have an active intolerance. We had no blood work done or anything since no one had any obvious symptoms. My oldest son has a mild malabsorption also and 2 of us are also intolerant to soy. Enterolab also does a gene test.

GlutenWrangler Contributor
GlutenWrangler
Posted

Charmaine,

Doctors can be useless sometimes. Don't take what he says as fact. If you suspect celiac, pursue it yourself. My doctor was dead-set on IBS, and he was wrong. Enterolab is a great way to get a diagnosis if you can afford it. You can go gluten-free now if you want and it won't affect the test results. If you can't afford Enterolab, just try the gluten-free diet. If you feel better, you will know that it is celiac. Just don't put everything into your doctor's hands. He may not be looking out for what's best for you. Good luck!

-Brian

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taz sharratt Enthusiast
taz sharratt
Posted
:( I'm so fed up. I had the blood test for celiac but it came back negative however when I eat anything with wheat or barley in I swell up like a pregnant lady. I get very tired and very depressed. I sometimes get sore bones and I go to the toilet a lot. My doctor said he's not going to send me for the biopsy as the blood was negative. Please can anyone help i'm so fed up and I can't get out of this viscious circle. Help! Charmaine.x :(

you can still have celiac and have a negative blood test, go on a gluten free diet for a while and see what happens, in my opinion its the most accurate test possible for celiac. you got nothing to lose.

taz sharratt Enthusiast
taz sharratt
Posted
Hi Charmaine, and welcome to this board. It sounds very much like you may at least be gluten intolerant. If you want official testing done, have it done by Enterolab if you can afford it. Open Original Shared Link

It's not cheap, but accurate, painless and would give you the answers you need. Since you don't have to be on gluten when doing their test (it's a stool test), I suggest you simply go on the gluten-free diet, to see if it helps you feel better. The diet really is the ultimate test, not the biopsy (even though that's what the ignorant doctors would like you to believe).

ursula, im in the uk and was wondering about entrolab, want the test as i dont want to go for biopsy and go back on gluten,do you know if entolab do tests in uk? have emailed them but no answer yet, also do you know about any other company that does this kind of testing and would do it for overseas customers? sorry for hijacking this thread but ive never heard of this company or this kind of testing before.

charmaine broxton Newbie
charmaine broxton
Posted
  • Author

Hi Taz

I'm from the UK too. I had a response from enterolab. They do deal with the UK it will just be slightly more expensive as you will have to paye the shipping costs.xx :)

Ursa Major Collaborator
Ursa Major
Posted

Right, I asked them a while back if they test people in Canada, and they said that they test internationally, but you have to pay to send your stool samples back by courier.

loraleena Contributor
loraleena
Posted

There are a lot of false negatives on those tests. You could have a stool test done by Enterolabs. Or, you could just go gluten free and see how you are. Good luck.

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