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Any Help Financing Testing For Celiac?


Candy

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Candy Contributor

I think I might have a problem with Gluten.I love bread but noticed about three years ago that I have major trouble digesting it-trouble that lasts for days.So I started staying away from American food favorites like pretzels,pasta,pizza,oatmeal,most breads,anything bready,grainy. My age is early 30's.I'm currently uninsured,but I've heard of people WITH insurance say most doctors don't help them with this or they're denied insurance,so maybe being insured wouldn't help much anyway.But I'd like to know if there is any financial assistance offered anywhere to help pay for an Enterolab test?I do come from the regions where people tend to get this condition(i got dna tested a few years ago,which also costs $350-I put it on a credit card and it was eventually paid off) and my family does carry unknown intestinal troubles,but til my bread problem I'd never suspected Celiac.It could be some other type of medical condition-the only way to know would be to test,but that has to be paid for out of hand just to even see if you have it.Maybe there is some sort of assistance for it-like welfare for celiacs or Needy? Gluten Intolerant? CALL#. If not maybe something'll come up in the future that'll allow me to afford to get tested. The whole test is $350 and the gene test separetely is $150.It's not a lot of money,but I don't have it to spend either.I have enough necessities to pay for currently,with other needs waiting on the back burner-I didn't forsee having to get tested for Celiac, too.


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nettiebeads Apprentice
I think I might have a problem with Gluten.I love bread but noticed about three years ago that I have major trouble digesting it-trouble that lasts for days.So I started staying away from American food favorites like pretzels,pasta,pizza,oatmeal,most breads,anything bready,grainy. My age is early 30's.I'm currently uninsured,but I've heard of people WITH insurance say most doctors don't help them with this or they're denied insurance,so maybe being insured wouldn't help much anyway.But I'd like to know if there is any financial assistance offered anywhere to help pay for an Enterolab test?I do come from  the regions where people tend to get this condition(i got dna tested  a few years ago,which also costs $350-I put it on a credit card and it was eventually paid off) and my family does carry  unknown intestinal troubles,but  til my bread problem I'd never suspected Celiac.It could be some other type of medical condition-the only way to know would be to test,but that has to be paid for out of hand just to even see if you have it.Maybe there is some sort of assistance for it-like welfare for celiacs or Needy? Gluten Intolerant? CALL#. If not maybe something'll come up in the future that'll allow me to  afford to get tested. The whole test is $350 and the gene test separetely is $150.It's not a lot of money,but I don't have it to spend either.I have enough necessities to pay for currently,with other needs waiting on the back burner-I didn't forsee having to get tested for Celiac, too.

<{POST_SNAPBACK}>

I never did have the "official" tests - bloodwork and the like. My dr put me on the gluten-free diet - no wheat, barley, rye or oats. Two weeks later no diarrhea, said it was celiac and stay on the diet. Of course, I'd have liked more information, but since coming to this forum I've learned so much more and have really improved health-wise.

Anyhow, why don't you just do the gluten-free diet w/o dr's? The only thing my current pcp does for me is monitor my bloodlevels, especially iron. Go completely gluten-free for three weeks, then introduce gluten one day and see what happens for the next several days while going back to gluten-free. That would be the diet challenge and is a valid diagnostic too. The only thing all of the tests could show you is if you had celiac disease or were just gluten intolerant. But the treatment is exactly the same. The only test I'm curious about getting for myself is the gene test. But it's not necessary and I'm living just fine without any of the tests.

Annette

Candy Contributor

Thanks Annette,you'e right about the diet adjustment,that it's the same with or without being tested.I guess the test just helps confirm if you have it ,because I feel sort of odd all over so I'm not sure what my condition is,like it could be something else,or a combination of celiac and other conditions.I'm can rule out things I was tested for.I'm not lactose intolerant,my mother said I was tested as a baby at the hospital where I was born.Everyone swore I had diabetes and I figured you don't know unless you know ,so I got an inexpensive glucose meter,and my blood sugar was not in the range of a diabetic-in fact it was a litle low,so I probably need a little candy every few days(to bring it up to normal).And even though Celiac testing costs a little, at leastI'd know for sure if that's what I have or not,where as now I'm not sure.There are many symptoms,and I experience some of them,as well as not being able to eat or excrete to much bread.I bought some 'RICE' spaghetti from the health food store in my area,because I do like pasta sometimes,and I'll probably visit WholeFoodsMarkets and get some of their Gluten-Free bread.So far obtaining gluten-free foods has been a hassle ,with the only item being gluten-free being 'Rice Flour in the Hispanic section of the regular white supermarket.I'll have to order some of the gluten-free products from on line stores.

StrongerToday Enthusiast
Thanks Annette,you'e right about the diet adjustment,that it's the same with or without being tested.I guess the test just helps confirm if you have it ,because I feel sort of odd all over so I'm not sure what my condition is,like it could be something else,or a combination of celiac and other conditions.I'm can rule out things I was tested for.I'm not lactose intolerant,my mother said I was tested as a baby at the hospital where I was born.Everyone swore I had diabetes and I figured you don't know unless you know ,so I got an inexpensive glucose meter,and my blood sugar was not in the range of a diabetic-in fact it was a litle low,so I probably need a little candy every few days(to bring it up to normal).And even though Celiac testing costs a little, at leastI'd know for sure if that's what I have or not,where as now I'm not sure.There are many symptoms,and I experience some of them,as well as not being able to eat or excrete to much bread.I bought some 'RICE' spaghetti from the health food store in my area,because I do like pasta sometimes,and I'll probably visit WholeFoodsMarkets and get some of their Gluten-Free bread.So far obtaining gluten-free foods has been a hassle ,with the only item being gluten-free being 'Rice Flour in the Hispanic section of the regular white supermarket.I'll have to order some of the gluten-free products from on line stores.

My story is almost the opposite: I paid for the blood tests (negative) and for expensive food allergy tests with Great Smokies - which also came up negative for any wheat/barley/oats sensitivity. And now I'm right where my dietician originally suggested.... not eating any gluten or dairy. I'm slowly reintroducing foods and keeping a food/symptom journal. I can see why having a piece of paper with the dx would give me some peace of mind - but bottom line is that I have to listen to my "gut reaction" - ha ha! ;) So don't worry about the paper, just eat what makes you feel good.

Rachel--24 Collaborator
My story is almost the opposite: I paid for the blood tests (negative) and for expensive food allergy tests with Great Smokies - which also came up negative for any wheat/barley/oats sensitivity. And now I'm right where my dietician originally suggested.... not eating any gluten or dairy. I'm slowly reintroducing foods and keeping a food/symptom journal. I can see why having a piece of paper with the dx would give me some peace of mind - but bottom line is that I have to listen to my "gut reaction" - ha ha! ;) So don't worry about the paper, just eat what makes you feel good.

I took the Great Smokies test also...I didnt have any sensitivities. This is not a good test for diagnosing gluten intolerance...just for figuring out other possible IgG sensitivities.

Enterolab is a better diagnostic test since it specifically looks for anti-gliadin antibodies. Gluten Intolerance isnt an allergy so it wouldnt show up in allergy tests anyways.

Like you said though...listen to your gut....thats really the best way to go. :)

ravenwoodglass Mentor
Thanks Annette,you'e right about the diet adjustment,that it's the same with or without being tested.I guess the test just helps confirm if you have it ,because I feel sort of odd all over so I'm not sure what my condition is,like it could be something else,or a combination of celiac and other conditions.I'm can rule out things I was tested for.I'm not lactose intolerant,my mother said I was tested as a baby at the hospital where I was born.Everyone swore I had diabetes and I figured you don't know unless you know ,so I got an inexpensive glucose meter,and my blood sugar was not in the range of a diabetic-in fact it was a litle low,so I probably need a little candy every few days(to bring it up to normal).And even though Celiac testing costs a little, at leastI'd know for sure if that's what I have or not,where as now I'm not sure.There are many symptoms,and I experience some of them,as well as not being able to eat or excrete to much bread.I bought some 'RICE' spaghetti from the health food store in my area,because I do like pasta sometimes,and I'll probably visit WholeFoodsMarkets and get some of their Gluten-Free bread.So far obtaining gluten-free foods has been a hassle ,with the only item being gluten-free being 'Rice Flour in the Hispanic section of the regular white supermarket.I'll have to order some of the gluten-free products from on line stores.

Your best bet, IMHO is to do the elimination and challange that was suggested. I spent 15 years spending an average of 17 thousand a year in co-pays for every test in the book. They took 12 to 14 tubes of blood on every visit to one of the best hospitals in NY and all they ever came up with was low B12 and UBOs (unidentified bright objects not suggestive of MS) on the MRI's. I never showed up positive on blood work. They were getting me ready for surgery for incontinence when it was suspected by a PT who nagged me to see an allergist. It was then found through the elimination diet. I put off surgery and within a relatively short time knew I wasn't going to need it. Once the ataxia and nerve damage healed with the aid of a gluten-free diet the incontinence went away, it was nerve induced and my nervous system was being attacked by gluten. Many others have similar stories. Your response to the diet is the truest test. Check out listings for products that are mainstream, degluten your kitchen and check your shampoos, cosmetics etc... Then challenge yourself 3 weeks to a month after being gluten-free. If you do need a gluten free diet don't be surprised if other health problems resolve too, not just tummy ones. Best Wishes

nettiebeads Apprentice
I'm not lactose intolerant,my mother said I was tested as a baby at the hospital where I was born..

You might go lactose free also. I had to at the onset of my celiac disease. The part of the villi that's damaged by the celiac disease is the same area that produces lactase. W/o lactase you can't digest lactose. After your intestines heal the lactase producing ability returns and then you will be able to tolerate milk products. I still don't drink much milk or eat a lot of cheese, but at least when I do I'm not bothered by it.


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      Welcome to the celiac.com community, @JudyLou! There are a couple of things you might consider to help you in your decision that would not require you to do a gluten challenge. The first, that is if you have not had this test run already, is to request a "total IGA" test to be run. One of the reasons that celiac blood antibody tests can be negative, apart from not having celiac disease, that is, is because of IGA deficiency. If a person is IGA deficient, they will not respond accurately to the celiac disease blood antibody tests (such as the commonly run TTG-IGA). The total IGA test is designed to check for IGA deficiency. The total IGA test is not a celiac antibody test so I wouldn't think that a gluten challenge is necessary. The second is to have genetic testing done to determine if you have the genetic potential to develop celiac disease. About 30-40% of  the general population have the genetic potential but only about 1% actually develop celiac disease. So, genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out. Those who don't have the genetic potential but still have reaction to gluten would not be diagnosed with celiac disease but with NCGS (Non Celiac Gluten Sensitivity).  Another possibility is that you do have celiac disease but are in remission. We do see this but often it doesn't last.
    • JudyLou
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