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Chicago Celiac Center Response Regarding Dgp And Ttg


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#1 powerofpositivethinking

 
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Posted 11 May 2013 - 03:56 AM

so I sent the following e-mail back in April when I had just found out I had a negative biopsy to UCCDC, and wanted to share my questions and the responses I've received.

 

Questions:

is it possible to include in your FAQ section an answer explaining exactly
what Deamidated gliadin peptides are in layman's terms? I have seen it
written in very scientific terms, but a simple explanation on your website
would be a great addition. thanks for your consideration.

Are raised DGP igG levels thought to be a first sign of early celiac? If it
was only gluten intolerance, your body shouldn't be producing any type of
antibodies, correct? I recently had high DGP igG levels, but a negative
biopsy. Is there any current research being conducted regarding a high DGP
score with a negative ttG score, and if that means you are on your way to
developing full blown celiac disease? thank you.


 
Responses: 

To the first point:  

Elevated DGP antibodies are often seen in celiac patients on a gluten-containing diet. They appear to have exactly the same value of the more established TTG-IgA antibody, and offer no advantage over TTG. However, it appears that in the very young child (i.e. in the first 2 years of life) with celiac disease DGP are a better test.

 

To the second point:

Correct: if it was only gluten intolerance (now we call it "non-celiac gluten sensitivity") DGP shouldn't be present. We are not aware of any research showing that a high DGP score with a negative ttG may represent early-onset celiac. A negative TTG and a negative biopsy essentialy do rule out celiac. Why is DGP-IgG elevated then? I don't know: but no test is - if taken alone - 100% diagnostic of anything in medicine.

 

 

*start rant-I will say I appreciate the honesty in saying they do not know why the DGP-IgG was elevated, but if no single test is diagnostic in medicine, why do they tell people they have HIV after giving them a screening test?  maybe because it has a high sensitivity and specificity, just like the DGP  :P  I truly wish they would do more research and studies on the DGP tests related to adults instead of only children-end rant*

 

Happy weekend, everyone!


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Diagnosed with celiac disease, but my fat malabsoption, EPI and Vitamin K deficiency have finally cleared themselves up do to the help from Creon!

Thankful for all the help I've received from members on this board!

Happy to have answers  :) 


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#2 Deaminated Marcus

 
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Posted 11 May 2013 - 04:42 AM

Oh NO :(  Powerofpositivethinking....  now you'll never get any sleep.

 

As you know I'm still in the process of getting diagnosed.

Personally if I got a positive DGP-IgG, I'd have a parade down the street.

 

 

 

1. I don't agree with: "A negative TTG and a negative biopsy essentialy do rule out celiac."

 

 

From my readings, DGP-IgG is more specific than a postive tTG which can have other causes.

I mean DGP = Deaminated Gliadin Peptide... what else can it be?

 

So in your case I think they missed the villi damages in the biopsy.

Maybe you had villi atrophy or damage lower down in the small intestine or they just missed it in the biospy.

 

 

 

2.  The type of gluten the food industry adds to whole wheat bread is already Deaminated so maybe your immune system reponded to it directly without a damage to the villi.  

That is something I wonder about and hope they research it one day.

(http://en.wikipedia....immunochemistry)

 

 

 

You could do a panel again but  your positive DGP - IgG is good enough for me.


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#3 nvsmom

 
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Posted 11 May 2013 - 08:07 AM

Hmmm. Most people do not have a bunch of positive scores on tests it seems. That would exclude a LOT, I would guess at least half, of the people around here... I don't know, it's almost like saying that you are not truely pregnant until you get at least two different positive tests.

 

Besides, you have had a positive response to the gluten-free diet right? I would consider that a positive test too, and that's two - what else could it be?

 

Hugs to you. try not to doubt. you are doing better now and that is the main thing.... even if it is frustrating to have doubts.


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#4 Deaminated Marcus

 
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Posted 11 May 2013 - 07:32 PM

Hi Powerofpositivethinking,

 

Here is a web page I had with some links to more published articles on Celiac serology.

 

 

http://pubmedcentral...rm=&pageSize=25

 

 

That should keep you busy   -_-  


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#5 powerofpositivethinking

 
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Posted 12 May 2013 - 04:15 AM

nicole and marcus, 

 

thanks for your responses  :)

 

I wasn't going to send a response back to UCCDC, but I decided to anyway.  If people don't ask for things, how will the medical community know there is a need for it?  Here's my response:

 

"Thanks for your response.  I hope that future research leads to more definite answers of what an elevated DGP means in adults, even if damage is not found during the duodenal biopsy, and those individuals are not igA deficient.  I am benefitting from a gluten free diet, and before I started I was found to have low cholesterol, albeit not from eating a low fat diet, am deficient in Vitamin K and D, and have low potassium.  With the diet I'm eating I shouldn't have had a problem from any of these, so I am working with my doctor to see if gluten was really the cause for these abnormalities.  I do not expect you to respond, and I am grateful for what UCCDC has done to bring celiac disease awareness to the forefront.  As future research is conducted, please consider studies with elevated DGP iga and igg in adults without iga deficiency and what they represent.  Again thank you for all of the work UCCDC is doing to bring awareness to celiac disease.  Hope you are enjoying your weekend!"

 

In the book Celiac Disease for Dummies, there is this quote that lingers in the back of my mind, "Unless your celiac disease is very severe, it is highly unlikely you will be deficient in vitamin K, and neither routinely testing for this nor use of vitamin K supplements is necessary."

 

If GottaSki hadn't posted the list of nutrient testing to request, I wouldn't have even gotten tested for it.  Under my insurance, they only test for vitamin K1, but my level was <0.13 in a reference range of 0.28-1.78, and I eat a lot of vitamin K rich food  :wacko: 

 

Marcus-I agree that maybe the deaminated level was a product of food to some point, and maybe that is why some people have low levels in their blood, but mine wasn't a low level, and then why didn't I have a DGP-igA to match it?  I don't expect you to answer this, but I'm just putting it out there  ;) btw, thanks for the links to pubmed  :) 

 

I was pretty upset after my biopsy results, but had come to terms that I would be gluten free because I do notice a positive difference.  Marcus, I am happy and thankful that something did show-up on my blood tests, and please keep us updated on your results!  I had sent this e-mail back on 4/13 to UCCDC, so when the response showed up in my inbox yesterday, I was more than a little surprised  :lol: 

 

Ever since I was little, I was the child that drove my parents nuts by asking the "why" questions to better understand.  It's just part of my nature, and I don't plan on giving up that part of my personality anytime soon or ever  :P 

 

Happy Mother's Day to all  :) 


  • 0

Diagnosed with celiac disease, but my fat malabsoption, EPI and Vitamin K deficiency have finally cleared themselves up do to the help from Creon!

Thankful for all the help I've received from members on this board!

Happy to have answers  :) 


#6 nora_n

 
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Posted 12 May 2013 - 04:32 AM

We think they missed celiac in your biopsies.

 

How many were taken, and how many did they look at? 

 

Did theycount the number of IELs?

 

Did they do the new tests, immunohistochemistry? The sample has to be frozen for that.


  • 0
gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.
daughter officially diagnosed celiac and casein intolerant.
non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5
Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet
Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

#7 powerofpositivethinking

 
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Posted 12 May 2013 - 04:56 AM

Hi Nora,

 

Here is my info on the procedure report:

 

"Normal duodenum bulb, 2nd portion of the duodenum, and 3rd portion of the duodenum.  8 biopsies taken."  

 

On the pathology report it reads, "Biopsy, duodenum: duodenal mucosa with no pathologic change; no evidence of celiac disease identified."  

 

that's all it lists in regards to the duodenum.  i had found an article regarding mice and that absorption of cholesterol takes place mainly in the jejunum and ileum.  http://www.jlr.org/c...7/1312.full.pdf

 

my B12 was a strong number within range, so it led me to think that maybe I have damage in my jejunum, but from my report my biopsies were all taken from the duodenum.  With every answer I think I have then I have another question that pops up.  If vitamin D, K, A and E are fat soluble, why were only D and K deficient?  Then I found that with low cholesterol, I read that total cholesterol under 160 was cause for concern, and mine was 135, your body cannot properly synthesize Vitamin D from sunlight because cholesterol is needed for that.  Here's my main thread if you're interested http://www.celiac.co...results-please/

 

to me reading about medical info and nutrition is far more interesting than fiction  :P

 

I am getting a repeat celiac panel draw along with vitamin K and D sometime in June, so it'll be interesting to see what those results say  :)

 

 

We think they missed celiac in your biopsies.

 

How many were taken, and how many did they look at? 

 

Did theycount the number of IELs?

 

Did they do the new tests, immunohistochemistry? The sample has to be frozen for that.


Edited by powerofpositivethinking, 12 May 2013 - 04:59 AM.

  • 0

Diagnosed with celiac disease, but my fat malabsoption, EPI and Vitamin K deficiency have finally cleared themselves up do to the help from Creon!

Thankful for all the help I've received from members on this board!

Happy to have answers  :) 


#8 Deaminated Marcus

 
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Posted 12 May 2013 - 08:31 AM

Hi Lisa... About vitamin K

I found this information in my library book on Celiac by Dr David L Burns.

On page 145 he write...

Vitamin K: a fat soluble vitamin made by intestinal bacteria that helps to clot blood.


Also on page 145...

"The colon is full of bacteria - mostly beneficial - that aid in digestion
and even produce some vitamins such as folic acid and vitamin K"

He goes on to explain about bacterial overgrowth.

I'm thinking your low vitamin K could be due to not having the correct bacteria in your colon.

(from my memory I believe there is more than one kind of vitamin K
because on Dr Oz there was a doctor who mentioned a kind of vitamin K
that was made by the bacteria in aged cheeze and then there is another vitamin K
in the green leafy vegetables so consider that in your investigations)

The cheeze the doctor on Dr Oz recommended eating I think was Elmental (spelling?).
But I think any aged cheeze would be good.
I don't recall if the vitamin K was in the cheeze
or just as a way of introducing the right bacteria into your colon.

I suspect it's both.

 

It would be an interesting experiment to eat aged cheeze to see if this increases your vitamin K.

 

.........................................................................................................................................

 

 

As for cholesterol, I heard it's mostly produced by the liver and that the dietary cholesterol

has not much impact on your blood serum cholesterol but I could be wrong.

Did your doctor do liver blood tests?

 

My cholesterol was always low but in recent years it is high but the ratio is good.

 

Again from Dr Oz a guest doctor explained that it's a subgroup in the LDL that

is the bad one, not just the LDL total.

My PCP didn't know this and the blood test for that sub group isn't done in Canada

but Dr Oz says it's available (in the U.S.).

 

You are right to be curious about your cholesterol levels and if this can indicate where is the damage.

 

................................................................................................................................................

 

 

As for vitamin D please consider my experience...

 

 

I was taking about 1000 ui of vitamin D daily.

I'm not a guy who likes to stand in the sun as I get dizzy.

Mushrooms and sardines are high in vitamin D but I didn't eat those.

 

In investigating another illness my PCP found that  my D.25 was  low normal.

My vitamin D 1.25 the active form was way over the limit.

This is because  the kidneys produce vitamin D 1.25

Granulomas also produce vitamin D 1.25 independently from diet or sun.

 

There fore when you get tested be sure to be tested from both D .25 and D 1.25

to compare the 2 kinds of vitamin D and that will give you a better story of what

is going on in your body.

 

I'm off vitamin D and we will test it all in the future again.

 

 

Here is a  video that I used to understand vitamin D:

 

Understanding Vitamin D

Medical educational piece created for Abbott Labs

 

.............................................................................................................

 

About your question about diaminated gliadin that you asked me...

when I read this artlcle

http://en.wikipedia....immunochemistry

 

I got the impression that maybe some people have a direct immune response to the DGP from gluten added to foods like whole wheat bread vs white bread and not from the DGP produced by the tTG.

 

 

 

....................................................................................................................................

 

Why DGP-IgG vs DGP-IgA?    

 

 

I've read some articles about this such as...

For instance DGP-IgA is sensitive for people with liver problems but not DGP-IgG

DGP-IgG is better test chilidren under 2 years old.

 

 

I don't fully understand everything but when I was reading tTG-Iga vs tTG IgG

I read the difference is that it has to do with whether it pertains to B cell or T cell response. 

So that could be why you reacted with DGP-IgG vs IgA.

It could be T cell vs B cell which is where you should direct your research.

 

 

These  article talks about this.

 

http://pubmedcentral...les/PMC2653384/

 

http://en.wikipedia....immunochemistry

 

 

 

.................................................................................................................................

 

This one is quite fascinating but I haven't finished reading it yet:

 

http://physrev.physi...t/91/1/151.long

 

 

I have so much to do... 

 

 

.................................................................................................................................

 

I hope this doesn't add too much confusion to your research.

Unfortunately I'm not super smart to fully understand these articles.

I'm a research type myself for my own issues and my PCP loves this to a point.

I think he's the only person who understands me.

He's the one who said I have aspergers. Do you?

Please put the monkey back! I liked him !
He cheered me up everytime I saw him.

I became addicted to the monkey. 


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#9 psawyer

 
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Posted 12 May 2013 - 08:55 AM

The cheeze the doctor on Dr Oz recommended eating I think was Elmental (spelling?).

Emmental cheese is likely what he meant. It is commonly known as Swiss cheese.

ETA: The only purpose of this post is to clarify the obscure cheese reference. It is not a comment on the content or merit of Marcus' post.

Edited by psawyer, 12 May 2013 - 11:34 AM.
Clarification

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Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

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#10 Deaminated Marcus

 
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Posted 12 May 2013 - 09:29 AM

Thank you Peter.  :)  


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#11 Lima Bean

 
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Posted 12 May 2013 - 10:54 AM

Hi Lisa... About vitamin K



I hope this doesn't add too much confusion to your research.
Unfortunately I'm not super smart to fully understand these articles.


Please put the monkey back! I liked him !
He cheered me up everytime I saw him.
I became addicted to the monkey.


For a Newbie, you sure post a lot! Love the enthusiasm! but- I don't think I would post articles I didn't understand. How do you know they apply? :)


And I liked the monkey, too!


Edited to say: Not trying to be harsh, Marcus. I love that you want to help. :)

Edited by Lima Bean, 12 May 2013 - 11:22 AM.

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#12 nora_n

 
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Posted 12 May 2013 - 11:30 AM

I see they did not count the IELs, nor did they do any immune cell studies on the biopsies. Often they only do that at university hospitals.

 

http://www.ncbi.nlm....les/PMC2724402/


  • 0
gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.
daughter officially diagnosed celiac and casein intolerant.
non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5
Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet
Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

#13 nora_n

 
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Posted 12 May 2013 - 12:13 PM

Here is an entire paper on negative Ttg and positive DGP, (but on children) http://www.ncbi.nlm....les/PMC2863389/


  • 0
gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.
daughter officially diagnosed celiac and casein intolerant.
non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5
Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet
Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

#14 powerofpositivethinking

 
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Posted 12 May 2013 - 02:29 PM

thanks for all the replies!

 

I put the monkey back.  he is pretty cute, and he happens to be playing the best instrument ever  :rolleyes:   I had changed it to the beach because it's almost beach season in Delaware.  yay!!!

 

No, I've never been diagnosed with Aspergers.  though interestingly enough those with Aspergers and autism tend to do well in music, and I teach music.  I have trouble keeping eye contact and have anxiety to a certain extent, but they have both improved going gluten-free.  In fact this time of year is school concert season, and normally, I would be having trouble sleeping, but I feel so much more relaxed.  there was an awesome article the other day on cnn.com about a girl with autism who found her place in the school band http://www.cnn.com/2...c-bullying-irpt  we all have our place in life  :)

 

I was only tested for Vitamin K1 because it is the only one LabCorp tests.  K1 is found in plants, K2 is made by the bacteria in the large intestine, but now how much seems up for debate.  see below.  Here's more info on Vitamin K http://lpi.oregonsta...amins/vitaminK/

 

"Bacteria that normally colonize the large intestine synthesize menaquinones (vitamin K2), which are an active form of vitamin K. Until recently it was thought that up to 50% of the human vitamin K requirement might be met by bacterial synthesis. However, research indicates that the contribution of bacterial synthesis is much less than previously thought, although the exact contribution remains unclear."

 

 

my liver enzymes were tested and were in the normal range.  

 

 

 

He's the one who said I have aspergers. Do you?

Please put the monkey back! I liked him!

 

I'm not eating dairy for the time being, but maybe I'll give Swiss cheese a try again in the future.  I've never really had a taste for it  :)  I thought maybe I was going too far giving up gluten and dairy, but I ate some yogurt covered, gluten-free pretzels a few weeks ago, and by that night my leg muscles were hurting the next day so were my joints.  that was my cue to stay away for now  :P

Emmental cheese is likely what he meant. It is commonly known as Swiss cheese.

ETA: The only purpose of this post is to clarify the obscure cheese reference. It is not a comment on the content or merit of Marcus' post.

 

 

Nora,

 

I have read they save your biopsy slides for awhile.  Would it be possible to request they do a IELs count and immune cell study on them, or do those two things have to be done right after the biopsy?

 

I see they did not count the IELs, nor did they do any immune cell studies on the biopsies. Often they only do that at university hospitals.

 

http://www.ncbi.nlm....les/PMC2724402/


  • 0

Diagnosed with celiac disease, but my fat malabsoption, EPI and Vitamin K deficiency have finally cleared themselves up do to the help from Creon!

Thankful for all the help I've received from members on this board!

Happy to have answers  :) 


#15 shadowicewolf

 
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Posted 12 May 2013 - 03:13 PM

Didn't the top researcher (or someone) for celiac do this guideline:

 

If you have 4 out of the 5, then you have celiac:

 

Symptoms on gluten diet

Symptoms resolve off gluten diet (positive response)

Positive blood test

Positive genetic test

Positive Biopsy

 

I could be wrong...


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