Costs Of Blood Tests For Celiac Panel

[Roberta]

I have recently had a positive biopsy for celiac and am trying to convince my brother to get tested. However, he does not have health insurance and therefore it is difficult to get him to realize how important it is for him to be tested. Does anyone know what the usual cost is of the necessary blood tests for celiac if you have to be self-pay? Also, if anyone knows of any medical centers in Florida that are going to be having free screenings that information would be very helpful.

Thanks in advance.

[CMCM]

I have recently had a positive biopsy for celiac and am trying to convince my brother to get tested. However, he does not have health insurance and therefore it is difficult to get him to realize how important it is for him to be tested. Does anyone know what the usual cost is of the necessary blood tests for celiac if you have to be self-pay? Also, if anyone knows of any medical centers in Florida that are going to be having free screenings that information would be very helpful.

Thanks in advance.

I was trying to figure out what to do myself, and since I have high-deductible insurance, I knew I'd basically have to pay for any blood tests. In our area is a laboratory aimed at people who don't have insurance or who want to test at an economical rate....They told me they had two tests, one a gluten antibody test and one a gluten sensitivity test. One of them was $199, the other was $175. Since this was going to be the cheapest I could do, and since Enterolab's complete test panel including the gene test and a casein sensitivity test was pretty much the same and the two blood tests....AND...since at that point I had been avoiding gluten for awhile, I decided to just go the Enterolab route. That should tell me everything I want to know. I'd be surprised if there were any clinics anywhere that did free screening for celiac.

If your brother isn't motivated, there may not be much you can do. If he has symptoms, he could do the gluten free diet for awhile and see if things improve. However, most people aren't inclined to restrict themselves that way unless symptoms are really bad. Since you have celiac disease, there is a higher than average chance he will also have it. Perhaps nothing has triggered symptoms for him yet....but he should at least know about what to look for in the future, and maybe when he's in a better financial/medical insurance situation he can pursue this.

Hope this helps!

Carole

[Merika]

Promethius Labs in San Diego (they do mail order) is one of the best celiac labs in the country. Last year, the cost was about $290 for the full panel celiac blood test. Any doc can run it.

Merika

[KathyMac]

I am the youngest of 6 kids. My father says he was diagnosed celiac back in 1928 at the age of two. He went on a banana and bacon diet for a year or so. He almost died prior to going on the diet. He was under the impression that celiac meant allergic to milk. He has eaten bread ever since I can remember. He is lactose sensitive and limits his millk intake. About 10 years ago my middle brother was diagnosed celiac with a biopsy. Then my oldest brother about a year later. The middle brother had us all participate in a study by J Hopkins ( I think). Blood tests were all negative for my family (husband and two kids). This past summer my oldest sister was diagnosed with biopsy as Celiac. ALL of the numbers kept saying you have a 1 in 10 chance of being celiac if you have a first degree relative. Well, by now it looked like my chances were 50-50. I decided to have myself, husband and kids tested. DNA proved that I got gluten sensitivity gene from one parent and celiac gene DQ2 from another. Went ahead and got my parents tested. Funny thing is, BOTH of them have the DQ2 gene. Plus they each have a gluten sensitivity gene. Now I know why the diagnosis rate in my family is so high. Genetic testing further indicated that my husband has two gluten sensitivity genes -- so both of my kids each have two gluten sensitivity genes one from me and one from my husband!! The kids and I were all diagnosed gluten sensitive using Entero Labs. After I got my husbands DNA results, I went ahead and ordered a test kit for him too. Can't wait to see the results of that.....

My younger son and I both tested negative by blood test the month prior to the Entero Lab test. I hope your brother isn't lulled into thinking that his chances are pretty good that he doesn't have it. I don't know who came up with the statistic that my chance of have celiac is only 1 in 10. I wish it were -- turns out it's about 1 in 1.

If your brother doesn't have the money to get tested, perhaps he should try eliminating gluten from his diet and see if it makes him feel better. I'm not sure what else he could do. Check the medical center at the University of Miami. Perhaps they are or will be running some studies on celiac disease.

[cindyann]

Hi, Kathy Mac, have you gone or have you been gluten-free? I have DQ2 and another for gluten sensitivity but my blood work in 2000 was negative, however my daughter was biopsy proven celiac 1/05 at age 20 after having been "sick" all her life. We both went gluten-free a year ago. I understand your bloodwork was negative but had you been gluten-free when you had tests done by Enterolab? I'm not sure if I should or not. I basically have a skin problem that derm's have not diagnosed as DH but is quite a bit like that. Allergy tests in '98 (skin) show reactions to nearly everything breathed or edible. Any suggetion? I agree that it would be well worth anyone's $$ to have the tests. I have 2 adult daughters, one of whom refuses to be tested and another who will when she recovers from RAI for Graves disease (autoimmune thyroid) which I also have. Thanks.

[CMCM]

I am the youngest of 6 kids. My father says he was diagnosed celiac back in 1928 at the age of two. He went on a banana and bacon diet for a year or so. He almost died prior to going on the diet. He was under the impression that celiac meant allergic to milk. He has eaten bread ever since I can remember. He is lactose sensitive and limits his millk intake. About 10 years ago my middle brother was diagnosed celiac with a biopsy. Then my oldest brother about a year later. The middle brother had us all participate in a study by J Hopkins ( I think). Blood tests were all negative for my family (husband and two kids). This past summer my oldest sister was diagnosed with biopsy as Celiac. ALL of the numbers kept saying you have a 1 in 10 chance of being celiac if you have a first degree relative. Well, by now it looked like my chances were 50-50. I decided to have myself, husband and kids tested. DNA proved that I got gluten sensitivity gene from one parent and celiac gene DQ2 from another. Went ahead and got my parents tested. Funny thing is, BOTH of them have the DQ2 gene. Plus they each have a gluten sensitivity gene. Now I know why the diagnosis rate in my family is so high. Genetic testing further indicated that my husband has two gluten sensitivity genes -- so both of my kids each have two gluten sensitivity genes one from me and one from my husband!! The kids and I were all diagnosed gluten sensitive using Entero Labs. After I got my husbands DNA results, I went ahead and ordered a test kit for him too. Can't wait to see the results of that.....

My younger son and I both tested negative by blood test the month prior to the Entero Lab test. I hope your brother isn't lulled into thinking that his chances are pretty good that he doesn't have it. I don't know who came up with the statistic that my chance of have celiac is only 1 in 10. I wish it were -- turns out it's about 1 in 1.

If your brother doesn't have the money to get tested, perhaps he should try eliminating gluten from his diet and see if it makes him feel better. I'm not sure what else he could do. Check the medical center at the University of Miami. Perhaps they are or will be running some studies on celiac disease.

KATHY....You seem to understand the gene results better than I do. My gene test turned out like yours...one celiac gene and one gluten sensitive gene, one from each parent. My mom has celiac disease so I figure the celiac gene came from her. The gluten sensitivity one is probably (though not necessarily I guess) from my dad, who died in 1989. That was a TOTAL surprise....but in retrospect, my dad was overweight, had major sinus problems, some digestive stuff, high blood pressure, and he got bladder cancer which set off events leading to his death at 73.

Do you understand the gene thing? I know we get genes from each parent, but if I had gotten a celiac gene from my mom, and nothing remarkable from my dad, is that possible?

I'm trying to figure out the probability that my 2 kids have these genes too. And my 3 siblings, who have never been tested and who never suspected either.

Like your father, my dominant complaint my entire life from birth has always been related to milk. I never suspected gluten despite the fact that my mom was diagnosed with celiac 40 years ago. She got terribly sick and lost huge amounts of weight and in fact almost died of malabsorption. Since I didn't follow that particular pattern, I figured I had escaped it!