71 replies to this topic

[plantime]

I have gluten sensitivity. I have been reading about it, and believe that is a the beginning stage of celiac disease. I refuse to wait until it becomes fluu-blown celiacs. I am on a gluten-free diet for the rest of my life. I think that I have avoided most of the agony and illness that others have suffered, simply by the early diagnosis of the sensitivity.

[sc875]

Hi.
I have been found to have malabsorption (fecal stain with fat and starches). I've lost 15 pounds over the last few years and have low ferritin, BUN.

I had a complete workup for celiac including three antiboidies (anti-gluten, antitissue and antiendomysal) and a small bowel biopsy that was negative.

My doctor now thinks the malabsorption is due to adrenal exhaustion and candida.
However, I am wonderinf if it worth doing the enterlab test. My only worry (besides cost) is that ther may be a high rate of false positives.

I would love to hear from others that have done the test.
Thank You

[sc875]

Hi.
I have been found to have malabsorption (fecal stain with fat and starches). I've lost 15 pounds over the last few years and have low ferritin, BUN.

I had a complete workup for celiac including three antiboidies (anti-gluten, antitissue and antiendomysal) and a small bowel biopsy that was negative.

My doctor now thinks the malabsorption is due to adrenal exhaustion and candida.
However, I am wonderinf if it worth doing the enterlab test. My only worry (besides cost) is that ther may be a high rate of false positives.

I would love to hear from others that have done the test.
Thank You

[plantime]

Stacie, I agree: your child's well-being is so worth the money you spent! You also got peace of mind, which is priceless!

[Sandi]

HI
My name is Sandi
And I am 46 and have been in pain and all for 6 years I have been going to the Drs. but they say its my weight, yes I am over weight (275) but I am not eating like I look like I would be eating.
I have such pain in my lower intestines and the gas that doesn't want to come out but run the laps around my intestines so that IM in pain. Who wants to eat when you know your going to be in pain. I am very, very anemic and iron defc. My legs are that tingling mess at night. constipation, nausea, bloating, fatigue, weakness, irritability, inability to concentrate, abdominal distention, my teeth are a mess even thought I take care of them, I can go on but you get the idea.
I have gone to Drs. again and they run the basic blood work and blame my weight and say "take Iron Pills." IM a widow with 3 kids, I have to be able to function here for them. At first I thought I had IBS and it was better for a while. Then I tried Atkins
and I got to feeling normal, what a pleasure it was not to be in pain and to sleep somewhat. and not feel like a wet wash rag. I went off the diet and the systems came back worse, nothing I did make me feel better so I was in pain all day and night. I did some research found Celiac and said maybe, I called my Dr. and he wont run any tests, saying you guessed it weight and what ever.
SO I put my self on the Gluten free diet and with in a day I was feeling better, 2 weeks IM almost normal, I have the bloating if I slip up or didn't know I ate gluten, I know, I have a way to go to learn what to eat and all, But I want to know how important is it without a confirmed DX from a dr.
What about this Lab, Money is so tight but I would try to do it if I thought the results were true results and would Drs. believe those results? http://www.enterolab.com/
Is this worth it? Any other advice?
IM sorry this is so long and I don't mean to sound like I am whining but I cant take this pain any more.
thank you sooo much
sandi

[plantime]

My doctor accepted the diet alone as proof of intolerance. I understand from other posts that Enterolab is quite accurate, but your doctor might not accept the test. You have to be consuming gluten to get a positive result on bloodtests, and have severe damage for a positive biopsy. Many people feel so much better on the gluten-free diet, that they do not want to go back on gluten just for testing. I am not sure how important a dx is, I guess it just depends on personal preference!

[feedjake92]

Do you need a doctor's order for these tests?

[plantime]

No. You can go to www.enterolab.com and order the tests yourself. You have to pay for them when you order them, and they are fairly expensive. If you can get your doctor to order them, maybe your insurance will pay part of it. No guarantees, though. You can always file with your insurance yourself, I guess. I have never tried to, so I don't know how it would work.

[Phoebe2]

Hi,

gastro ordered a stool test nad found WBC white blood cells which pointed to inflamation to somewhere in my intestinal tract.

he wants to to a camera down the throat but all my cramps are near my belly button.

i am tired of being put under and would like a test.. ive checked helthcheckusa.com and i dont understand the test they do and i went to www.enterolab.com but i just dont know which test to try. I have very little money and want to make sure i get a definitive answer if i ahve celiac disease... do celiac's usually show inflamation?

i would just rather take a blood test than have any more surgical procedures!!

could someone please help me pick out on that is the cheapest yet best indicator wether i have this disease or not.. im very confused

thanks

[YankeeDB]

I'm no expert but based on my reading, if you want to have a blood test for celiac disease, ask for a "anti-tissue transglutamase igA" test. If it is negative, ask to be tested for "total serum igA" to see if you are igA deficient which means you would be likely to get a false negative on the first test. If you are igA deficient (not super likely, but possible) then you will need to delve deeper. I think this is the way to go if your insurance will cover the test.

If not, go to enterolab and consult with them about which test is best for you. I have heard they are very helpful there. Explain financial concerns as well.

Unfortunately, with this disease, informing yourself as much as possible and learning to be less reliant on medical professionals seems to be necessary at this point in time.

Best wishes to you!

[taneil]

I was just tested by Enterolab. I received my results in about four weeks. For $99 you can have the Gluten Sensitivity Stool test and this will tell you if you are senstive to gluten and thus need to go gluten-free. IF you can spend $169 then you can get the Gluten Sensitivity Stool Panel which will also tell you if you have malabsorption problems, meaning your intestines are damaged. The Complete Stool Panel which costs $229 also includes Tissue Transglutaminase test, but the way I understand it, if you have sensitivity to gluten you need to go gluten-free so the Tissue Transglutaminase is just another test to see if you are also having the Autoimmune reaction to gluten also. Both mean the same thing...gluten-free for life so the sensivity test I would think would tell you enough (but that is my opinion) .

I was able to do the complete stool test and the gene test which said that I have both of the Genes that predispose one to Gluten Sensitivity. This means that I don't have to get the gene test for my children because they have one of the genes from me no matter what.

Hope this helps. I have e-mailed Enterolab multiple times with questions and Dr. Fine is very prompt in responding and very kind and informative.

Not that this helps up front costs, but if insurance won't pay for the tests, you may be able to write part of the cost of the tests off on your taxes.

[gf4life]

Not that this helps up front costs, but if insurance won't pay for the tests, you may be able to write part of the cost of the tests off on your taxes.

Don't count on being able to get a deduction for this. You have to have more than 7.5% of your income as medical enpenses and then they only deduct the portion over 7.5%. My family of 5 never even came close to the 7.5% even though we have a lot of doctor copays, medication copays, dental bills, eyeglass/contacts/vision bills, and the Enterolab testing at about $350.

I wasn't even sure I wanted to risk the Enterolab bill as a write off, since it says that lab tests are deductible if ordered by your doctor. It was the if ordered by your doctor part that got me. Anyhow, we didn't meet the 7.5%, even if we tried to add in the cost of gluten-free foods we wouldn't have qualified. And I am not sure the Enterolab diagnosis would count for tax purposes to be able to deduct the cost difference of the gluten-free foods, anyhow.

Regardless of whether you are able to get a tax break, I do highly recommend Enterolab for their diagnostic purposes. I would ask Dr. Fine what test he would recommend if you were only able to afford one.

God bless,
Mariann