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Help With My Test Results Please.

nettinpete

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nettinpete Newbie
nettinpete
Posted

Hi all,

 

I have had my blood test results back from my doctor and would like an opinion on if you think I would have a high chance of having celiac disease. He has suggested to me it looks like I would be but has sent me for further blood tests. He then has said I need to cut out gluten for one month and be retested. I have had these tests performed as I have terrible bloating and pain after eating also loose stools.  

 

My results are

 

Deamidated Gliadin IgG  <25U/mL

Tissue Transglutaminase IgA 94

 

Endomysial IgA says Weakly Positive.

 

Can someone please give me feedback on what these would mean as the doctor I seen was certainly not informative or helpful or easy to understand at all.

 

There was also an allergy testing performed which came back a result of 10.10 (high) for Grass Mix. Not sure if this has anything to do or related to Cealiac disease. Just curious as I'm thinking wheat is a type of grass....not sure.

 

Cheers,

Annette

 

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kareng Grand Master
kareng
Posted

Those look very positive in the ranges I have seen. What were the reference ranges? For example, "TTG IGA normal <10 ."They can be different from different labs.

nettinpete Newbie
nettinpete
Posted
  • Author

Those look very positive in the ranges I have seen. What were the reference ranges? For example, "TTG IGA normal <10 ."They can be different from different labs.

The reference ranges are

Deamidated Gliadin IgG Normal <25, Low (25-50), Mod (51-80), Strong (>80)

Tissue Transglutaminase IgA Normal <20, Low (20-50), Mod (51-80), Strong (>80)

 

Hope this helps.

kareng Grand Master
kareng
Posted

The reference ranges are

Deamidated Gliadin IgG Normal <25, Low (25-50), Mod (51-80), Strong (>80)

Tissue Transglutaminase IgA Normal <20, Low (20-50), Mod (51-80), Strong (>80)

 

Hope this helps.

Welcome to the club!

Open Original Shared Link

"Is tTG elevated in persons with non-celiac gluten sensitivity?

Non-celiac gluten sensitivity does not cause any elevation of tTG antibodies in the blood stream."

kareng Grand Master
kareng
Posted

Also, if you are going to have an endoscopy, you shouldn't stop eating gluten. And 1 month off gluten might not be enough time to see a significant drop in the numbers. People seem to keep making antibodies for a few weeks after they stop eating gluten. And a big reason they don't drop to 0 is that a month may not be enougt time for you to get all the gluten out of your life. There is a bit of a learning curve.

The Celiac Center suggests you wait 3-6 months for your first follow-up blood test.

Open Original Shared Link

cyclinglady Grand Master
cyclinglady
Posted

The next step is usually an endoscopy to obtain intestinal biopsies. The rule is that you should be eating gluten until all testing is complete. You should not need another blood test so soon. Sounds like your doctor is not knowledgeable. You may need to have another six months later to see if you are diet compliant.

Here is a link regarding celiac testing from the University of Chicago, a leader in celiac research:

Open Original Shared Link

nettinpete Newbie
nettinpete
Posted
  • Author

Well thankyou all for your help. The links were great KarenG. I feel I now understand a bit more. This is all new to me and a bit overwhelming at the moment.

 

The next lot of blood tests the doctor has ordered me to get are :

 

Coeliac Serology HLA-DQ2/DQ 8 Endomyseal antibody. After reading one of the links it sounds like one test is for a gene test?

 

There was one more test that I did as part of my first round of blood tests but the results weren't back for that test yet. Not sure what that test was, but it had to be sent somewhere else for testing which takes longer.

 

So my readings in my above results are these alarmingly high or normal for Celiac Disease? Would you say I have celiac disease or should I not be alarmed till after I have an endoscopy?

 

And obviously my doctor isn't knowledgeable cyclinglady....looks like I will need to find a better doctor or at least hopefully when I get the next lot of results back they will refer me to a specialist who will hopefully be able to help me out more.

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RMJ Mentor
RMJ
Posted

Grass mix probably means perennial ryegrass, Kentucky bluegrass, Bermuda grass, and other lawn grasses. Allergies to grasses are pretty specific so I don't think wheat would cross react.

kareng Grand Master
kareng
Posted

Grass mix probably means perennial ryegrass, Kentucky bluegrass, Bermuda grass, and other lawn grasses. Allergies to grasses are pretty specific so I don't think wheat would cross react.

An allergy test has nothing to do with Celiac disease. Celiac is not an allergy to grasses or wheat.

cyclinglady Grand Master
cyclinglady
Posted

Karen did welcome you to the club....but we are not doctors here. Just folks who have been there and done that!

Genetic testing in my opinion is not important at this point. Get in to see a GI doctor and one that has had celiac patients! Once all testing is complete, then you can go gluten free.

We are here to help! No need to be alarmed. The good news is that you should feel better soon!

Most celiacs do have issues with dairy. So, in the meantime ditch it for now. Once healed you most likely can start eating ice cream again. And giving up dairy will not affect celiac testing. You could have other food intolerances, but dairy is a good start.

nettinpete Newbie
nettinpete
Posted
  • Author

Thankyou everyone for your helpful posts. I shall now try and find a reputable doctor or specialist for after my results come back to be referred to. And yes it will be good to hopefully some day start feeling better again. I always have been lactose intolerant so limit my dairy already....just "need" my milk for my coffee...can't quite give that away completely.

ravenwoodglass Mentor
ravenwoodglass
Posted

I hope you finish testing soon so you can get gluten-free and start feeling better. some of us do find we are able to tolerate dairy after we heal a bit so someday you may be able to eat some gluten-free cheesecake with that cup of coffee.

One more quick note. You mention your doctor doing gene testing on you. If by any chance you turn out not to have one of those 2 genes don't let that negate your positive blood work. There are rare instances when someone will have celiac but not have one of the two most common celiac associated genes. 

SMRI Collaborator
SMRI
Posted

I hope you finish testing soon so you can get gluten-free and start feeling better. some of us do find we are able to tolerate dairy after we heal a bit so someday you may be able to eat some gluten-free cheesecake with that cup of coffee.

One more quick note. You mention your doctor doing gene testing on you. If by any chance you turn out not to have one of those 2 genes don't let that negate your positive blood work. There are rare instances when someone will have celiac but not have one of the two most common celiac associated genes.

 

You've said this before but simple biology says that what you are saying is not possible.  

ravenwoodglass Mentor
ravenwoodglass
Posted

You've said this before but simple biology says that what you are saying is not possible.  

More is being found out about genetics every day. My gene DQ 9 has now been shown to be also associated with celiac. A quick search of peer reviewed sites will show this. 

SMRI Collaborator
SMRI
Posted

More is being found out about genetics every day. My gene DQ 9 has now been shown to be also associated with celiac. A quick search of peer reviewed sites will show this. 

 

It's possible that other genes are associated with Celiac I guess, but there has to be some genetic component or it's not Celiac.

notme Experienced
notme
Posted

Thankyou everyone for your helpful posts. I shall now try and find a reputable doctor or specialist for after my results come back to be referred to. And yes it will be good to hopefully some day start feeling better again. I always have been lactose intolerant so limit my dairy already....just "need" my milk for my coffee...can't quite give that away completely.

if you have access to lactose free milk ( i use lactaid brand) it's pretty good for your coffee (or, in my instance, tea :)  )  i still use it even though i can have dairy now.  

nvsmom Community Regular
nvsmom
Posted

It's possible that other genes are associated with Celiac I guess, but there has to be some genetic component or it's not Celiac.

There probably are other genetic components that cause celiac disease. We have only known about the DQ2 and DQ8 for a few years now, and doctors agree that approximately 3% of celiacs do not have either of those genes.... It happens. It will be interesting what other links they discover in the next few years.

Welcome to the board, nettinpete. It looks like you belong with us. You have the same positive tests that I had. Hope you are well soon.

SMRI Collaborator
SMRI
Posted

There probably are other genetic components that cause celiac disease. We have only known about the DQ2 and DQ8 for a few years now, and doctors agree that approximately 3% of celiacs do not have either of those genes.... It happens. It will be interesting what other links they discover in the next few years.

Welcome to the board, nettinpete. It looks like you belong with us. You have the same positive tests that I had. Hope you are well soon.

 

Links have been posted disputing this claim and those 3% have been found to have something, not Celiac....if Celiac is an autoimmune disease, which it is, there has to be some genetic component present, identified or not.

ravenwoodglass Mentor
ravenwoodglass
Posted

Links have been posted disputing this claim and those 3% have been found to have something, not Celiac....if Celiac is an autoimmune disease, which it is, there has to be some genetic component present, identified or not.

No one is saying that celiac is not genetic. Just that not all the associated genes are commonly known. In my own family I have seen one person who was diagnosed with positive blood and biopsy and then years later had their genes tested and was told since they didn't have DQ2 or DQ8 that they couldn't have celiac. So now they are back on gluten and suffering the effects. That is what encouraged me to get my genes tested. I have DH and am a firmly GI diagnosed celiac and I don't have either of those two genes. I have a double DQ9. IMHO no one who has positive blood tests should quit or not start the diet just because the gene test is negative. 

beth01 Enthusiast
beth01
Posted

No one is saying that celiac is not genetic. Just that not all the associated genes are commonly known. In my own family I have seen one person who was diagnosed with positive blood and biopsy and then years later had their genes tested and was told since they didn't have DQ2 or DQ8 that they couldn't have celiac. So now they are back on gluten and suffering the effects. That is what encouraged me to get my genes tested. I have DH and am a firmly GI diagnosed celiac and I don't have either of those two genes. I have a double DQ9. IMHO no one who has positive blood tests should quit or not start the diet just because the gene test is negative.

Can't dispute that. I think there is a lot that will be discovered about celiac now that it's the forefront of every discussion out there known to man due to the "fad" of gluten free. Just look how many AI diseases there are that they can't isolate a linked gene from.

  • 2 weeks later...
MitziG Enthusiast
MitziG
Posted

Your ttg is positive, dgp negative. Ttg is generally Celiac but can also elevate with other autoimmune disorders. If you get a positive EMA then you have celiac. Gene test is controversial at best- if you have the genes or makes it more likely you have celiac, that is all. Glad you are finding a more knowledgeable dr.

nettinpete Newbie
nettinpete
Posted
  • Author

Your ttg is positive, dgp negative. Ttg is generally Celiac but can also elevate with other autoimmune disorders. If you get a positive EMA then you have celiac. Gene test is controversial at best- if you have the genes or makes it more likely you have celiac, that is all. Glad you are finding a more knowledgeable dr.

What is EMA? I've booked to get my next blood tests done next Saturday morning.

nvsmom Community Regular
nvsmom
Posted

What is EMA? I've booked to get my next blood tests done next Saturday morning.

 

EMA IgA is the anti endomysial antiboies immunoglobulin A test. It is very similar to the tTG IgA test but it tends to appear later as the disease progresses.  It is often negative in early celiac disease or in very young children.  The EMA IgA is very specific to celiac disease though, so if you get a positive test, it is as close to a sure thing as a diagnosis can get.

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