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Blood Test Question


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#1 Lillyth

 
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Posted 11 April 2006 - 08:04 PM

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
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#2 jerseyangel

 
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Posted 12 April 2006 - 03:58 AM

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!
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Patti


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#3 Lillyth

 
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Posted 12 April 2006 - 06:52 PM

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
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#4 Ursa Major

 
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Posted 12 April 2006 - 09:45 PM

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.
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#5 Lillyth

 
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Posted 13 April 2006 - 11:08 AM

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! :D

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
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#6 jennyj

 
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Posted 13 April 2006 - 01:49 PM

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 <_<
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Diagnosed March 2006 celiac sprue
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#7 penguin

 
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Posted 13 April 2006 - 02:58 PM

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.
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#8 Lillyth

 
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Posted 13 April 2006 - 03:20 PM

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 :unsure:

Lil
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#9 penguin

 
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Posted 13 April 2006 - 03:30 PM

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

http://www.nlm.nih.g...icle/000233.htm


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


Bleh, no wonder doctors are clueless :P
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Alright, don't worry even if things end up a bit too heavy
We'll all float on, alright
Well we'll float on good news is on the way...

#10 Rachel--24

 
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Posted 13 April 2006 - 03:35 PM

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 :unsure:

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.
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#11 Lillyth

 
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Posted 13 April 2006 - 04:08 PM

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 :unsure:

Lillyth

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

 
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Posted 13 April 2006 - 06:15 PM

Thank you so much for all the help. I am so glad I have someone(s) ;) who can answer my questions. :D
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Diagnosed March 2006 celiac sprue
Severe iron deficent anemia Jan 2002
Hypoglecemia 2000


"I can do all things through Christ who strenghtens me"

#13 ravenwoodglass

 
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Posted 14 April 2006 - 04:20 AM

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.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#14 Lillyth

 
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Posted 14 April 2006 - 09:04 AM

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
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#15 ravenwoodglass

 
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Posted 14 April 2006 - 11:07 AM

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.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)




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