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Which Test Is Most Accurate?

LoisArbuckle

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LoisArbuckle Rookie
LoisArbuckle
Posted

I have all the symptoms of Celiac disease. Even some childhood problems I'm just now realizing after reading the book "Celiac Disease: A hidden epidemic". I've been gluten free for 3 weeks and most of my major issues have disappeared. This week we went out to my favorite Thai place called Surin. They said their food was wheat free. I got really sick. Now I'm a little confused so I'm looking into testing. I'm having a hard time telling my family I can't eat gluten. I just know they think I'm a hypochondriac. Anyway...

Do you guys know what is the best way for me to get an accurate test? I do not have insurance so, keep that in mind.

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sbj Rookie
sbj
Posted

I advise you to not mess around with your health. If you are/were having symptoms then you really owe it to yourself to see a medical professional. A single doctor's visit is going to cost you less than these other tests you are thinking about. I think you are jumping the gun, trying to confirm your own diagnosis. (In other words, you have already diagnosed yourself with celiac, now you're not sure so you are going to test for celiac.) That's too quick and it's a bridge too far. You don't know if it was celiac to begin with. Digestion problems can be very serious. What if it is something else entirely - say an ulcer or tumorous growth? Aren't you jumping the gun immediately testing for celiac?

Why not tell us what your symptoms are first as a starting point? If you are considering spending $100, $200, $400 for testing why not spend that amount on a doctor's visit first? Tell us where you live and someone might even be able to recommend a good MD well-versed in celiac who you can trust.

aikiducky Apprentice
aikiducky
Posted

About the accuracy of the tests - if you want an official diagnosis that a doctor will accept, what you need is a blood test (nowadays usually endomysial antibody (EmA), tissue transglutaminase (TTg) and total IGA) combined with a biopsy of your small intestine (so an endoscopy, NOT a colonoscopy).

I think the parent site of this board, celiac.com, has some articles about testing.

None of the tests are 100% accurate, but the blood tests above are quite specific meaning that if they are positive it's very unlikely to be anything else but celiac. Ditto for a positive biopsy.

Stool testing can tell you whether or not you are sensitive to gluten, but not WHY you are sensitive to it. Another way to find that out is by taking gluten out of your diet, the reintroducing it. If step one relieves your symptoms and step two brings them back, you are probably sensitive to gluten. But that doesn't tell you anything about the reason why.

I'm not officially diagnosed myself, I'm four years gluten free and healthy and happy without a diagnosis. But I encourage everyone who still hasn't been gluten free for too long to seek an official diagnosis. After you have been gluten free for a while your intestines heal, and your bloodwork returns to normal, and then it's almost impossible to tell whether or not you have celiac or not. A person with celiac needs to be strictly gluten free for the rest of their life (depending on your age, maybe even for a good 50 years!), including all kinds of life situations where you might need an official diagnosis. If at all possible, try to get one before going gluten free.

Pauliina

LoisArbuckle Rookie
LoisArbuckle
Posted
  • Author

oppss

LoisArbuckle Rookie
LoisArbuckle
Posted
  • Author
I advise you to not mess around with your health. If you are/were having symptoms then you really owe it to yourself to see a medical professional. A single doctor's visit is going to cost you less than these other tests you are thinking about. I think you are jumping the gun, trying to confirm your own diagnosis. (In other words, you have already diagnosed yourself with celiac, now you're not sure so you are going to test for celiac.) That's too quick and it's a bridge too far. You don't know if it was celiac to begin with. Digestion problems can be very serious. What if it is something else entirely - say an ulcer or tumorous growth? Aren't you jumping the gun immediately testing for celiac?

Why not tell us what your symptoms are first as a starting point? If you are considering spending $100, $200, $400 for testing why not spend that amount on a doctor's visit first? Tell us where you live and someone might even be able to recommend a good MD well-versed in celiac who you can trust.

Thank you all very much for taking time to answer my questions. In a previous post I asked If it was possible to find out on my own if I had celiac. I also posted all of my health issues. I'm not "jumping the gun".. I have many many reasons to think it is celiac. My 2 cousins and aunt have just been diagnosed with celiac disease. We all have had the same problems for years. That's when I found out what the disease was, I'd never heard of it before.

My health issues are: acid reflux, vomiting almost daily(after eating anything with gluten or msg), constipation, depression, bad leg pains (like growing pains, had them since I was a child).

I've been clinically diagnosed with acid reflux, GERD, depression, dyspepsia, and IBS. None of the diets or meds for these worked.

I've had 2 upperGI/endoscopy done. I called the doctor yesterday and asked if he did a biopsy from my small intestine. He said he didn't take any biopsy and didn't even go into my small intestine and that nothing was wrong with me.. I'm just depressed. Then he laughed and gave me 7 different antidepressants within a years time.

I'm desperate and tired of being sick.. and have no money. Please help.

happygirl Collaborator
happygirl
Posted

LA - see my PM.

LoisArbuckle Rookie
LoisArbuckle
Posted
  • Author

ALSO-

I've been almost gluten free for 3 weeks. Almost all of the stomach problems subsided. Still having bad leg pains. When I accidently ate gluten I vomited.

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LoisArbuckle Rookie
LoisArbuckle
Posted
  • Author
LA - see my PM.

Happygirl, what is PM?

LoisArbuckle Rookie
LoisArbuckle
Posted
  • Author
Happygirl, what is PM?

PM- Personal Message, got it! : )

LoisArbuckle Rookie
LoisArbuckle
Posted
  • Author

OK GUYS... I'm done.

I've been as close to gluten free as possible for 3 weeks and fine I just ate a slice of bread to see what would happen and within 30 minutes I was bloated, hurting, and puking. I have a good enough answer. I just wont eat gluten!

Thank you so much for all your responses. Please keep in touch.

happygirl Collaborator
happygirl
Posted

Hang in there!!!!!

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