Blood Test Question

[Lillyth]

Is the blood test for celiac something I can have my regular doctor perform, or do I need to do the mail order thing?

Also, do I need to be consuming gluten currently for the test to come back positive?

Thanks!

Lillyth

[jerseyangel]

  Lillyth said:

Is the blood test for celiac something I can have my regular doctor perform, or do I need to do the mail order thing?

Also, do I need to be consuming gluten currently for the test to come back positive?

Thanks!

Lillyth

Hi Lillyth--Welcome! Your doctor can do the testing--tell him/her that you want the complete Celiac Blood Panel. Yes, you do need to be on gluten before the test. Good luck!

[Lillyth]

  jerseyangel said:

Hi Lillyth--Welcome! Your doctor can do the testing--tell him/her that you want the complete Celiac Blood Panel. Yes, you do need to be on gluten before the test. Good luck!

Ugh! The last thing in the world right now I want to do is to go back on gluten! That sucks that they can't test it any other way. Oh well. I guess I'll just have to hope that the itchey rash I've had on my arms for the past month and a half is dermatitis herpataformis (sp), and let it go at that.

I'm not sure any amount of tax write-offs would be worth what I had to go through consuming gluten again. (As that is, ultimatly, the reason I want the diagnosis in the first place - for the tax write off of the gluten free foods. I already know that consuming gluten makes me sick)...

Thank you so much for the warm welcome & the info Patti!

Lillyth

[Ursa Major]

Actually, there may be another way! If you have a skin biopsy and are positively diagnosed with dermatitis herpetiformis, that would mean that you automatically have a firm celiac diagnosis. Because ONLY celiac disease causes DH, and the only cure for DH is the gluten free diet.

So, have your doctor refer you to a dermatologist to look at your rash, and to have him do the skin biopsy! You don't have to go back on gluten for that, because it takes at least a year of being gluten free for the deposits under the skin that cause the rash to go away. And that is what they test for.

[Lillyth]

  Ursula said:

Actually, there may be another way! If you have a skin biopsy and are positively diagnosed with dermatitis herpetiformis, that would mean that you automatically have a firm celiac diagnosis. Because ONLY celiac disease causes DH, and the only cure for DH is the gluten free diet.

So, have your doctor refer you to a dermatologist to look at your rash, and to have him do the skin biopsy! You don't have to go back on gluten for that, because it takes at least a year of being gluten free for the deposits under the skin that cause the rash to go away. And that is what they test for.

Wow! Thank you Ursula!

I just had a very frustrating morning with the doc, who tried to tell me that I didn't have the symptoms of celiac. When she rattled off the ones I "should" be having, I told her those were the symptoms for celaic sprue, not just celiac. She then told me that's what celiac was, is celiac srpue. I may not be s*!^ting out my insides, but I have a distended tummy, I get raging headaches & extreme exhaustion (to the point where I can't do anything except fall down on my bed asleep) every time I consume any gluten, in addition to immediatly putting on weight inmy tummy area.

Also, she wouldn't take a biopsy, even though I asked her. But hey, that's Kaiser for ya!

The doc I saw today wasn't my normal doc, so when I see her (my normal doc) next month and the super-strenght hydrocortizone (sp) creme they gave me today doesn't work, I'll ask her to refer me then. She did do some blood tests though, so I'll find out more when I hear back.

I'm fairly sure that the skin thing is Dh, as it happens to correspond to my consumption of gluten. (The doc actually told me "you have normally dry & bummy skin?" but in a way that was nothing like a question. I told her no, I've had smooth, silky, hydrated shin my whole life. She then told me "oh, well, someimtes when you get older your skin just gets this way". WTF?!?!? I'm not even 30 yet!)

Anyway, thanks for all the info and for listening to me rant.

I'll keep you updated!

Lillyth

[jennyj]

Being new I do not know what the difference between celiac and celiac sprue is, can someone tell me?

My dr. said I tested positive for celiac sprue. Thanks

[penguin]

  jennyj said:

Being new I do not know what the difference between celiac and celiac sprue is, can someone tell me?

My dr. said I tested positive for celiac sprue. Thanks

They're the same. Celiac Disease, Celiac Sprue, Non-tropical Sprue, and Gluten enteropathy are all the same. The one that's not celiac is tropical sprue.

It's very confusing.

[Lillyth]

  ChelsE said:

They're the same. Celiac Disease, Celiac Sprue, Non-tropical Sprue, and Gluten enteropathy are all the same. The one that's not celiac is tropical sprue.

It's very confusing.

I thought sprue was the thing that happens if celiac goes intreated for a while - the thing that gives you the wasting.

Maybe I'm wrong. I've heard sprue refered to as "full-blown sprue" before. And all the sprue stories I've heard have involved wasting away. I thought sprue was the advanced stage, if you will.

Now I'm confused too

Lil

[penguin]

Nope, they're all the same. Here's an article from medline plus (national institutes of health):

Open Original Shared Link

Look under alternative names, and you'll see all the synonyms....

Bleh, no wonder doctors are clueless

[Rachel--24]

  Lillyth said:

I thought sprue was the thing that happens if celiac goes intreated for a while - the thing that gives you the wasting.

Maybe I'm wrong. I've heard sprue refered to as "full-blown sprue" before. And all the sprue stories I've heard have involved wasting away. I thought sprue was the advanced stage, if you will.

Now I'm confused too

Lil

Maybe you're thinking of refractory sprue which is basically Celiac Disease which has led to so much damage that it does not heal. This is very rare though. "Sprue" has nothing to do with wasting away its just a name. You can call it Celiac, Celiac Sprue, Gluten Intolerance, Gluten Enteropathy....you can call it whatever you want but its all the same. "Refractory" means that the villi arent healing while following a strict gluten free diet.

[Lillyth]

  Rachel--24 said:

Maybe you're thinking of refractory sprue which is basically Celiac Disease which has led to so much damage that it does not heal. This is very rare though. "Sprue" has nothing to do with wasting away its just a name. You can call it Celiac, Celiac Sprue, Gluten Intolerance, Gluten Enteropathy....you can call it whatever you want but its all the same. "Refractory" means that the villi arent healing while following a strict gluten free diet.

Okay, so it sounds like the doc was right on the name part - though I was right on the symptoms part.

But hey - who ever said that just because a doctor knows the name of a disease it means they know what they're talking about?

(Heck, the nurse practitioner at least said that if I got sick eating gluten that was a pretty good sign I had celiac, even though the doc said I didn't have the right symptoms). Oh well. I guess it's a good thing I didn't wait for a diagnosis before going gluten free. I may not have a formal dx - but at least I feel WAY better...

And yeah, I think I was thinking of refractory sprue. All these names be corn-fusing

Lillyth

P.S. I sure feel silly now, having railed on the doc... (At least about the names part)...

[jennyj]

Thank you so much for all the help. I am so glad I have someone(s) who can answer my questions.

[ravenwoodglass]

  Lillyth said:

Ugh! The last thing in the world right now I want to do is to go back on gluten! That sucks that they can't test it any other way. Oh well. I guess I'll just have to hope that the itchey rash I've had on my arms for the past month and a half is dermatitis herpataformis (sp), and let it go at that.

I'm not sure any amount of tax write-offs would be worth what I had to go through consuming gluten again. (As that is, ultimatly, the reason I want the diagnosis in the first place - for the tax write off of the gluten free foods. I already know that consuming gluten makes me sick)...

Thank you so much for the warm welcome & the info Patti!

Lillyth

lillyth, If you are going through all this for the tax write off only you are putting yourself through hell for nothing. IMHO Our family thought we would do that when first diagnosed, hubby is a retired computer anyalst for a big insurance company and this was his take on this. First you can only write off after you get to a certain percentage of your income, I believe it is somewhere around 7.5 %, then you have to figure how much more each gluten-free items costs than the regular stuff, for example if gluten-free bread is $4 and regular is $2 you can deduct the $2. You also need to be a taxpayer who itemizes to take advantage of this. We decided with the saving we were seeing in meds and doctors visits , we spent an average of 17 grand a year prediagnosis, far outweighed the hassle of the tax deduction even with the pro's we use every year. Also now 3 years into the diet we find we eat relatively little of the 'special' foods anyway, we mostly eat meat, fruit, and veggies maybe a loaf of bread and a bag of pretzels a week. The tax hassle just wasn't worth it for us.

[Lillyth]

  ravenwoodglass said:

lillyth, If you are going through all this for the tax write off only you are putting yourself through hell for nothing. IMHO Our family thought we would do that when first diagnosed, hubby is a retired computer anyalst for a big insurance company and this was his take on this. First you can only write off after you get to a certain percentage of your income, I believe it is somewhere around 7.5 %, then you have to figure how much more each gluten-free items costs than the regular stuff, for example if gluten-free bread is $4 and regular is $2 you can deduct the $2. You also need to be a taxpayer who itemizes to take advantage of this. We decided with the saving we were seeing in meds and doctors visits , we spent an average of 17 grand a year prediagnosis, far outweighed the hassle of the tax deduction even with the pro's we use every year. Also now 3 years into the diet we find we eat relatively little of the 'special' foods anyway, we mostly eat meat, fruit, and veggies maybe a loaf of bread and a bag of pretzels a week. The tax hassle just wasn't worth it for us.

I am a Realtor (read as: independant contractor), which means that I itemize everything. So keeping the reciepts on this (and figuring out all the percentages) is no big deal. If I do it with my cell phone usage, it shouldn't be all that much more difficult to do it with the food. (Especially since we will be eating lots of pizza & the like, as we have a six year old who does not yet have "adult" tastes in food).

Although I originally started out on this quest for a dx for tax reasons, I think it might be worth it to pursue this until I get a dx, just so I can go back to the doc I saw yesterday & clue her in - before she dismisses anyone else who may have the disease and not know it. Not everyone figures it out. I suspect I may have had it for a at least a decade before I did. Heck - if I hadn't done that fast last year with my husband, and then eaten a peiece of ravioli which made me instantly (well, within 20 minutes) sick, I probably never would have figured it out. (Especially as I never go to the doctor unless I have no other choice - I have a bad track record with them, including one near-death, and near-permanent-nerve dammage experience).

Also, the thing on my arms that she told me emphatically is NOT DH itched more when I put the hydrocortizone (sp) on it. In all my years, I have never had a rash itch more after using it.

Ah well. I guess it's my years of having been an activist. I feel like I need to do something about it, especially since she may have other patients with the same problem...

Lil

[ravenwoodglass]

  Lillyth said:

I am a Realtor (read as: independant contractor), which means that I itemize everything. So keeping the reciepts on this (and figuring out all the percentages) is no big deal. If I do it with my cell phone usage, it shouldn't be all that much more difficult to do it with the food. (Especially since we will be eating lots of pizza & the like, as we have a six year old who does not yet have "adult" tastes in food).

Although I originally started out on this quest for a dx for tax reasons, I think it might be worth it to pursue this until I get a dx, just so I can go back to the doc I saw yesterday & clue her in - before she dismisses anyone else who may have the disease and not know it. Not everyone figures it out. I suspect I may have had it for a at least a decade before I did. Heck - if I hadn't done that fast last year with my husband, and then eaten a peiece of ravioli which made me instantly (well, within 20 minutes) sick, I probably never would have figured it out. (Especially as I never go to the doctor unless I have no other choice - I have a bad track record with them, including one near-death, and near-permanent-nerve dammage experience).

Also, the thing on my arms that she told me emphatically is NOT DH itched more when I put the hydrocortizone (sp) on it. In all my years, I have never had a rash itch more after using it.

Ah well. I guess it's my years of having been an activist. I feel like I need to do something about it, especially since she may have other patients with the same problem...

Lil

In your case then what you may want to check into is the gene typing done by Enterolab. I know you don't have to be eating gluten for the gene tests and perhaps your doctor might accept this along with your dietary response as a positive diagnosis. You may even be able to deduct the Enterolab fees on your taxes also as a medical expense.

[Lillyth]

  ravenwoodglass said:

In your case then what you may want to check into is the gene typing done by Enterolab. I know you don't have to be eating gluten for the gene tests and perhaps your doctor might accept this along with your dietary response as a positive diagnosis. You may even be able to deduct the Enterolab fees on your taxes also as a medical expense.

Cool! Is that something that can be done through my doc, or no? Also, do you think I should have my son tested? And if I do have him tested will it reveal whether he has the gene, even if it has not been "turned on"? He doesn't show any signs, but I'm afraid to get him tested at all, because his school does not accept anyone with any special diets - he really loves his school, and it took us a while to find it. The public schools where we are are awful, and all the other private schools are upwards of 12k a year, which tax write offs for food or no, we just can't afford!

(I feel silly for even saying this - the thought of having him tested occured to me yesterday, but then all I could think of is if he's positive, he can't keep going to his school.) Arg.

Lil

[penguin]

  Lillyth said:

Cool! Is that something that can be done through my doc, or no? Also, do you think I should have my son tested? And if I do have him tested will it reveal whether he has the gene, even if it has not been "turned on"? He doesn't show any signs, but I'm afraid to get him tested at all, because his school does not accept anyone with any special diets - he really loves his school, and it took us a while to find it. The public schools where we are are awful, and all the other private schools are upwards of 12k a year, which tax write offs for food or no, we just can't afford!

(I feel silly for even saying this - the thought of having him tested occured to me yesterday, but then all I could think of is if he's positive, he can't keep going to his school.) Arg.

Lil

Unless he has any symptoms at all, he doesn't need to do the diet, even if he has the gene. It just means that he might get celiac "switched on" further down the line, and even then he might not. It's like having a gene that makes you more suceptible for rheumatiod arthritis (another autoimmune). You're fine as a bouncing child, but it gets switched on later in life. You don't take bextra your whole life just because you have a chance of getting RA at an older age. It's a crapshoot. No worries with the school right now.

[Lillyth]

  ChelsE said:

Unless he has any symptoms at all, he doesn't need to do the diet, even if he has the gene. It just means that he might get celiac "switched on" further down the line, and even then he might not. It's like having a gene that makes you more suceptible for rheumatiod arthritis (another autoimmune). You're fine as a bouncing child, but it gets switched on later in life. You don't take bextra your whole life just because you have a chance of getting RA at an older age. It's a crapshoot. No worries with the school right now.

Whew! Glad to hear that.

Do you supose the gene test is something my HMO will pay for? (And is it something they can do, or is this one of those mail order things)?

Lil

[Eugene]

  jerseyangel said:

... you want the complete Celiac Blood Panel.

PMJI

Is complete Celiac Blood Panel just three antibody tests (as described in the FAQ)? Or is it something more comprehansive?

TIA, Eugene

[Lillyth]

  Eugene said:

PMJI

Is complete Celiac Blood Panel just three antibody tests (as described in the FAQ)? Or is it something more comprehansive?

TIA, Eugene

What does "PMJI" stand for?

[Eugene]

  Lillyth said:

What does "PMJI" stand for?

Pardon My Jumping In

[jerseyangel]

  Eugene said:

PMJI

Is complete Celiac Blood Panel just three antibody tests (as described in the FAQ)? Or is it something more comprehansive?

TIA, Eugene

Hi Eugene--go here for the tests and more info on them--

Open Original Shared Link

Hope this helps

[Lisette]

Hi! I'm new to this site, forgive my new questions!

We're planning on having our son tested through Enterolab after reading so many positive testimonials. Can anyone tell me if dermatitis herpetiformis (that was mentioned earlier in this thread), always looks exactly like the photos you find online? He doesn't get the violent looking, itchy big blisters, but his thighs are almost always covered with a raised rash that itches and is worse after showering. He's had this since toddler days and is now 13. He's also started having lots of gas, belching, stomach distress and lots of weight gain around his belly. Please tell me if you think these things could be related to celiac disease? Also, he began having seizures about the same time all of these things started about a year and a half ago and the Enterolab nurse e-mailed me that celiac could exacerbate seizures. Has anyone ever had this happen or know of someone who has?

Sorry to ramble, we're just clutching at straws here and will appreciate any help you all can give!

Thanks so much!

Lisette

[floridanative]

As a child my brother had what you are describing your son has. My Mother and I both have Celiac. My now grown brother still gets the rash (not as bad now) but has not been tested yet. Good luck to you and welcome!

[Lillyth]

  Lisette said:

Hi! I'm new to this site, forgive my new questions!

We're planning on having our son tested through Enterolab after reading so many positive testimonials. Can anyone tell me if dermatitis herpetiformis (that was mentioned earlier in this thread), always looks exactly like the photos you find online? He doesn't get the violent looking, itchy big blisters, but his thighs are almost always covered with a raised rash that itches and is worse after showering. He's had this since toddler days and is now 13. He's also started having lots of gas, belching, stomach distress and lots of weight gain around his belly. Please tell me if you think these things could be related to celiac disease? Also, he began having seizures about the same time all of these things started about a year and a half ago and the Enterolab nurse e-mailed me that celiac could exacerbate seizures. Has anyone ever had this happen or know of someone who has?

Sorry to ramble, we're just clutching at straws here and will appreciate any help you all can give!

Thanks so much!

Lisette

When I lloked around for DH photos, I had to do quite a bit of looking because the rash I had looked way tamer than the photos. I finally found one that looked like what I had, it was on someone's chest. Mine were also worse after I showered.

Funny enough, I cut the gluten out of my diet, and it calmed right down, though when I went to see a doc (not my regular one, she didn't have any appointments for a few weeks), she refused to test me for DH. (But that's Kaiser for you).

I don't know about the seizure thing, but as I've been looking back on my childhood, I realize there is NO reason for me to have the tummy weight - I was active ALL the time. I was also raised Seventh Day Adventist, which mean that we ate a lot of "fake meat", which is high in gluten because that's what they use to bond it together.

If I have any advice for you it would be do whatever it takes to have you doc test your son - raise high holy hell if you have to, but MAKE them do it. Docs just seem to be stupid about stuff. With the exception of one time (when I honestly didn't know what was wrong with me), every time I have gone to a doctor and told them what I thought was wrong with me, I have been right and the doctor has been wrong.

Make sure your doctor does the test you need. Remember - he works for YOU!

Lil