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My Blood Tests And What To Do Next


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#1 RL2011

 
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Posted 02 June 2011 - 05:26 PM

Here are my blood tests results. Does showing positive for Deamidated Gliadin Peptide Antibody, IgA (DGP IgA) with 9.7 EU/ml and negative for the other tests suggests I should schedule a biopsy? What does this mean given your experiences?

I posted this comment yesterday on another discussion:

I do not understand why abiopsy is needed when this individual shows positive for celiac disease. I askthis because I have been suffering digestive issues for my entire life that areconsistent with gluten intolerance. I also had a rash last year for 4 monthsthat I now believe is/was dermatitis herpetiformis. A few weeks ago I was(blood) tested and it came back positive for Celiac Disease. I do not have acopy of the test with me at this moment to provide my numbers and I wonder nowis it really important to have a biopsy done to further confirm celiac diseaseor not.

Trying to understand what to do next...


PROMETHEUS Celiac Serology


_________AssayResult________________________________Value_____Reference Range

DeamidatedGliadin Peptide Antibody, IgG (DGP IgG)..............<0.4EU/ml.........< 1.3 EU/ml

DeamidatedGliadin Peptide Antibody, IgA (DGP IgA)................9.7 EU/ml.........< 2.9 EU/ml

Anti-HumanTissue Transglutaminase IgA ELISA (TTG IgA)........ .04 U/ml.........<10.3 U/ml

Anti-EndomysialIgA IFA (EMA IgA)...............................................Negative...........Negative

Total Serum IgA by Nephelometry (Total IgA).............................158mg/dl..........44-441 mg/dl


I am waiting for my Doctor tocall me back to discuss the merits of doing a biopsy.

I am not soliciting any medical advice; just your feedback is greatly appreciated about what you would do if this were your blood tests results given the above scenario.

Thanks,

Richard
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Richard

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#2 mushroom

 
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Posted 02 June 2011 - 05:50 PM

The DGP is supposedly one of the most specific tests for celiac, according to Dr. Rodney Ford. Therefore, I would assume I had it. Whether or not you choose the biopsy is up to you. I don't know what your symptomatology is and whether there would be anything else that could be found by having the EGD, other than say a hiatal hernia or a duodenal ulcer. Doctors generally like to do the biopsy for confirmation as it is the so-called "gold standard" (how I hate that term :P ) of diagnosis, but it is your decision whether or not to have it. If your insurance would cover most of the cost, is is a relatively low-risk, painless procedure (you are sedated and given a medication to make you not remember it). Regardless of what it revealed, based on your blood test alone I would go on the gluten free diet for a good three-month trial to see if there was improvement/resolution of your symptoms.

Only you can determine if it is important to you to go ahead and have the procedure, which, if positive, will give you that piece of paper that says "celiac" on it. Remember, this can be a positive in convincing friends and family of your need for the gluten free diet, but we have heard of it being a negative when it comes to health and life insurance - not from all companies, but it has happened.

Good luck in your decision-making. :)
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#3 Skylark

 
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Posted 02 June 2011 - 11:06 PM

With the DGP and DH I don't think there is any doubt that you are celiac, no matter what the biopsy shows.

The biopsy would let you know the degree of damage and give you a benchmark if you decide to be re-biopsied later in life to confirm that the gluten-free diet is working. Some people find it difficult to stick to the diet without the proof provided by both blood and biopsy, but that's a double-edged sword. The biopsy can come back false negative because the damage can be patchy and it's missed by bad luck. Then you are left scratching your head.
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#4 ravenwoodglass

 
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Posted 03 June 2011 - 04:12 AM

Welcome to the board. I agree with the other posters. The choice to do the biopsy is up to you. No matter what the biopsy states you do need the diet. There can be false negatives on the biopsy. One of the reasons is that damage can be patchy and with 22 ft of small intestine a damaged spot can be missed. One other option is getting the rash checked to see if it is DH. They would need to biopsy the area next to the rash not the rash itself. A dermatologist would do that. They do need to be looking specifically for DH so bring your panel results with you if you go that route. A diagnosis of DH is a diagnosis of celiac even if folks don't have stomach or other celiac related problems.
If you do have DH you also want to avoid iodine until the rash has been cleared for a while.
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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)

#5 RL2011

 
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Posted 03 June 2011 - 10:59 AM

Thanks for the feedback.

Sticking to a gluten free diet for me will be a challenge. I have had some interesting digestive situations while traveling across country by motorcycle and hope that a proper diet will changethat.

Wish I could find a gluten free girlfriend who liked to take motorcycle adventures everywhere and ski, snowmobile, hike,and... I don't know anyone personally who has gluten issues. It was reassuring to find this forum.

Rich


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Richard

#6 ravenwoodglass

 
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Posted 04 June 2011 - 04:07 AM

Thanks for the feedback.

Sticking to a gluten free diet for me will be a challenge. I have had some interesting digestive situations while traveling across country by motorcycle and hope that a proper diet will changethat.

Wish I could find a gluten free girlfriend who liked to take motorcycle adventures everywhere and ski, snowmobile, hike,and... I don't know anyone personally who has gluten issues. It was reassuring to find this forum.

Rich



You will get used to gluten free lifestyle. It does seem challenging at first but it is quite doable.
As to finding a gluten free gal who would like doing what you do, well we are out there. We don't unfortuately have gluten free tattooed on our foreheads but single gluten free gals do exist and many of us wish we could find a good gluten free guy. One thing you might consider is going to a few gluten-free support group meetings if there are any in your area. You might meet someone that way.
  • 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)

#7 RL2011

 
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Posted 04 June 2011 - 07:20 AM

You will get used to gluten free lifestyle. It does seem challenging at first but it is quite doable.
As to finding a gluten free gal who would like doing what you do, well we are out there. We don't unfortuately have gluten free tattooed on our foreheads but single gluten free gals do exist and many of us wish we could find a good gluten free guy. One thing you might consider is going to a few gluten-free support group meetings if there are any in your area. You might meet someone that way.


Thanks for your words of encouragement. And for the idea of going to a local support group meeting. I will keep my eye out for those gluten-free tattoos.

Rich



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