Getting Confused! RePost! Results Only! What Exactly Do I Have? Yes/No?

[casuallythere]

Hello Everyone,

I have one other thread on here that a lot of people have tried to help me understand this disease. However I am getting confused in regard to understanding my results only.

I want to know exactly what my results mean, or possibly mean, and do do I have Celiac Right Now or Not? I am only going to post my results below and only want to know exactly about my results and what exactly do they mean.

From what I understand one level of Peptide IgA, even if a weak positive is not enough to diagnose for Celiac. And in regards to my IgA = 680 I believe this just means that my system does not like Gluten and is just always on the attack. For 4 years now I have had the major blood tests done saying there is no "serious underlying condition present" so therefore this must be Gluten. I am in limbo here, but I just want information on what exactly my results mean please. Thank you.

Results:

2011

HDL Cholesterol = 32 L

Should be >39

2013

IgA = 682 H / Should be 68 - 379

Endo = Negative

tTg Ab, IgA = 8.3 / Should be <20

Gliadin Peptide Ab, IgG = 9.2 / should be <20

Gliadin Peptide Ab, IgA = 10.0 / should be <20

tTG Ab, IgG = 6.5 / Should be <20

2014

IgA = 608 / Should be 68 - 379

Endo = Negative

tTg Ab, IgA = 11.9 / Should be <20

Gliadin Peptide Ab, IgG = 9.7 / should be <20

Gliadin Peptide Ab, IgA = 12.1 / should be <20

tTG Ab, IgG = 10.1 / Should be <20

2014 – Different Test

CCP Antibodies IgG/IgA = 12 / should be 0 – 19

2014 – Different Test

Immunoglobulin A, Qn, Serum = 710 / should be 91 – 414

2014 – Different Test

Immunoglobulin A, Qn, Serum = 721 / should be 91 – 414

Immunoglobulin M, Qn, Serum = 271 / should be 40 - 230

2014 – Different Test [Later in the year]

Immunoglobulin A, Qn, Serum = 753 / should be 91 – 441

Immunoglobulin M, Qn, Serum = 270 / should be 40 – 230

2017 - A

Immunoglobulin A = 690 / should be 68 – 379

Endomysial Screen = Negative

tTG Ab, IgA = 2 / should be <4

Gliadin Peptide Ab, IgG = 2 / should be <20

Gliadin Peptide Ab, IgA = 20 / should be <20

tTG Ab, IgG = 1 / should be <6

Cholesterol = 123 / should be 125 – 200

HDL Cholesterol = 29 / should be >40

2017 - B

Immunofixation, Serum:

No monoclonal protein identified.

HLA Typing for Celiac Disease:

The patient has one of the HLA-DQ variants associated with celiac disease. More than 97% of celiac disease patients carry either HLA-DQ2 (DQA1*05/DQB1*02) or HLA-DQ8 (DQA1*03/DQB1*0302) or both. However, 39%  of the general U.S. population carry these HLA-DQ variants, as a consequence, the presence of HLA-DQ2 or DQ8 or both variants is not per se diagnostic of cecliac disease. Genetic counseling as needed.

HLA-DQ2 – Negative

HLA-DQ8 – Positive

HLA-DQA1* – 01

HLA-DQA1* – 03

HLA-DQB1* – 0302

HLA-DQB1* – 0503

[TexasJen]

Antibodies are proteins in your body that your immune system makes to protect you.  There are different types of antibodies M, G, A, E.  They are usually written in short hand like this: IgA (Immunoglobulin A)

In general, A is made in your intestines, E is an allergy antibody (run by histamine), G is long term and M is short term.  

There are many different types of antibodies in your body. Each antibody is specific to a certain foreign body (i.e. there are antibodies to adenovirus that cause the common cold, antibodies to pollen, dust, bacteria etc) For example, the CCP antibody in the list above is very specific for rheumatoid arthritis.

When your doctor ordered a general IgA level, that measures ALL of the different types of antibodies in your body. However, it does not diagnose Celiac specifically. The only disease a total IgA level can diagnose is IgA deficiency (or other immunodeficiencies caused by low functioning immune system). Your doctor also ordered an anti-TTG antibody - this is an antibody to transglutaminase. There are 2 kinds of these - IgA and IgG (intestine and long term). There are other antibodies that tend to be positive in celiac - endomysial antibodies and gliadin. It looks like from your list that ALL of the antibodies ordered that measure antibodies found in Celiac were negative. As long as your were not on a gluten free diet at the time, this generally indicates you do not have celiac (it's not 100% BTW)

 

Hope that helps

 

 

[GFinDC]

2 hours ago, casuallythere said:

...

2017 - A

Immunoglobulin A = 690 / should be 68 – 379

Endomysial Screen = Negative

tTG Ab, IgA = 2 / should be <4

Gliadin Peptide Ab, IgG = 2 / should be <20

Gliadin Peptide Ab, IgA = 20 / should be <20

...

This is probably what is usually called the DGP IgA test.  If the range is correct and less than 20 is normal, then your result of 20 is above normal.  That would mean you are having an abnormal IgA immune reaction to gliaden.  Which means you have celiac disease, if there is corresponding villi damage.  The DGP igA test is very specific to the gliaden protein fragment that is involved in celiac reactions.  Having only one immune test positive is enough for celiac damage to occur.

[casuallythere]

2 hours ago, TexasJen said:

Antibodies are proteins in your body that your immune system makes to protect you.  There are different types of antibodies M, G, A, E.  They are usually written in short hand like this: IgA (Immunoglobulin A)

In general, A is made in your intestines, E is an allergy antibody (run by histamine), G is long term and M is short term.  

There are many different types of antibodies in your body. Each antibody is specific to a certain foreign body (i.e. there are antibodies to adenovirus that cause the common cold, antibodies to pollen, dust, bacteria etc) For example, the CCP antibody in the list above is very specific for rheumatoid arthritis.

When your doctor ordered a general IgA level, that measures ALL of the different types of antibodies in your body. However, it does not diagnose Celiac specifically. The only disease a total IgA level can diagnose is IgA deficiency (or other immunodeficiencies caused by low functioning immune system). Your doctor also ordered an anti-TTG antibody - this is an antibody to transglutaminase. There are 2 kinds of these - IgA and IgG (intestine and long term). There are other antibodies that tend to be positive in celiac - endomysial antibodies and gliadin. It looks like from your list that ALL of the antibodies ordered that measure antibodies found in Celiac were negative. As long as your were not on a gluten free diet at the time, this generally indicates you do not have celiac (it's not 100% BTW)

 

Hope that helps

 

 

Can you please look at this response below? Why are you both saying two different things?

24 minutes ago, GFinDC said:

This is probably what is usually called the DGP IgA test.  If the range is correct and less than 20 is normal, then your result of 20 is above normal.  That would mean you are having an abnormal IgA immune reaction to gliaden.  Which means you have celiac disease, if there is corresponding villi damage.  The DGP igA test is very specific to the gliaden protein fragment that is involved in celiac reactions.  Having only one immune test positive is enough for celiac damage to occur.

This is why I am so confused. I have one person saying I don't have it and one person saying I do. It is a weak positive and I have heard that blood tests alone cannot gurantee you a diagnosis. Only multiple biopsy's can, not just one. 

I also have two different Doctor's saying something different as well. Primary Doctor says mine is weak positive and that I should go gluten free and my GI says stay on Gluten and lets do a Biopsy.

I could be in between right now, and just having a Gluten Intolerance and Celiac has not been activated. I have researched a lot of this and Celiac has to be triggered and activated for you to have it. I do not have any of the other symptoms for Celiac except the minor ones. I am not loosing weight, in pain, etc...

Please both of you expound on your answers to clarify more. Thank you.

[Ennis-TX]

It does look like mixed results but I seeing it as a positive when I read it. I suggest staying on gluten for a bit and getting the endoscope and biopsies done. This is the standard and there is no reason to stop only half finished. Once you get the full diagnoses I would then suggest going gluten-free, and working out your issues from there.

[casuallythere]

19 minutes ago, Ennis_TX said:

It does look like mixed results but I seeing it as a positive when I read it. I suggest staying on gluten for a bit and getting the endoscope and biopsies done. This is the standard and there is no reason to stop only half finished. Once you get the full diagnoses I would then suggest going gluten-free, and working out your issues from there.

I just don't feel comfortable doing a biopsy and the doctors cutting a lot in my stomach, with also knowing that they could pick a few spots that are clean and still come back negative. Way to much to go through without a guarantee. I am satisfied with the level of information that I have received to know that I will be going gluten free, because I do have it in my genes and I do not want to activate it if I already haven't yet. 

The only thing left to debate is the conversation in the other thread of mine is about whether I can have a spec of it here or there when my villi full heals. I believe I can but everyone gets upset here when I say that.

The reasons why I feel these results are not conclusive is because I have not yet crashed. I believe when Celiac gets activated your blood levels actually reverse, give up, and get really low. Opening you up to infection, other diseases, etc. This has not yet happened to me yet, but I feel would have if I my dad never told me about his issue and that I never checked with my Doctors.

I am thankful to my Dad for letting me know and everyone on the internet.

I just wish someone could see these results and let me know what is exactly going on.

[Ennis-TX]

46 minutes ago, casuallythere said:

I just don't feel comfortable doing a biopsy and the doctors cutting a lot in my stomach, with also knowing that they could pick a few spots that are clean and still come back negative. Way to much to go through without a guarantee. I am satisfied with the level of information that I have received to know that I will be going gluten free, because I do have it in my genes and I do not want to activate it if I already haven't yet. 

The only thing left to debate is the conversation in the other thread of mine is about whether I can have a spec of it here or there when my villi full heals. I believe I can but everyone gets upset here when I say that.

The reasons why I feel these results are not conclusive is because I have not yet crashed. I believe when Celiac gets activated your blood levels actually reverse, give up, and get really low. Opening you up to infection, other diseases, etc. This has not yet happened to me yet, but I feel would have if I my dad never told me about his issue and that I never checked with my Doctors.

I am thankful to my Dad for letting me know and everyone on the internet.

I just wish someone could see these results and let me know what is exactly going on.

You will not even notice the biopsy as they only take a very tiny amount.

 I know how I personally react, a lot of us have very serious symptoms and reactions. You seem to be a silent celiac. One where your symptoms are not as pronounced, it is one of the kinds out there. But as you can imagine  those of use that do have very violent reactions, to it, and it used to be much less, well we sorta look at you with a odd look. No offense, I am both envious of your reactions, and at the same time disturbed that you would think cheating would be alright. But I had that light beat me near to death and traumatize the living frack out of me. This whole "Oh But a little bit WON'T hurt" is total bull sh*t for those of us that have the violent reactions, and we get this enough out in public, and hearing it here is going to get you a general feeling of animosity (Trust me I wish to punch people in public that say that crap after what I have been through). Think of it like someone with a peanut allergy who has to use a ebi pen or end up dying on the floor, do you think they find joking about, it or pushing peanut butter on them is going to go well?

Growing up my symptoms where tolerable, in hindsight I debate if I should have enjoyed it back then or changed over to prevent myself from being in my current state. Many of us would choose to go back in time and remove gluten from our diet sooner to prevent some of the complications that developed. The whole crash thing is pretty much the backwards. One day it just goes over the top and flips and attacks everything more so, how it was for me slowly crept up then one day all of a sudden full on bed ridden, brain fried, constant issues everything just cascaded in a few months to much much worse. Everyone is very different on how it effects them and sometimes it stays silent for years then something triggers it. Others never have the major problems, while we also have the group that have been fighting it since they were born.

I get the whole overwhelming feeling of this life changing disease, but I personally insist you look at long term. Sure you might get more complications and you might not. You might be fine for years, or it could jump up and rip you a new one like it did me. Everyone is different, the choice in the end is yours.

[squirmingitch]

1 hour ago, casuallythere said:

I just don't feel comfortable doing a biopsy and the doctors cutting a lot in my stomach, with also knowing that they could pick a few spots that are clean and still come back negative. Way to much to go through without a guarantee. I am satisfied with the level of information that I have received to know that I will be going gluten free, because I do have it in my genes and I do not want to activate it if I already haven't yet. 

The only thing left to debate is the conversation in the other thread of mine is about whether I can have a spec of it here or there when my villi full heals. I believe I can but everyone gets upset here when I say that.

The reasons why I feel these results are not conclusive is because I have not yet crashed. I believe when Celiac gets activated your blood levels actually reverse, give up, and get really low. Opening you up to infection, other diseases, etc. This has not yet happened to me yet, but I feel would have if I my dad never told me about his issue and that I never checked with my Doctors.

I am thankful to my Dad for letting me know and everyone on the internet.

I just wish someone could see these results and let me know what is exactly going on.

I am with GFinDC's interpretation of your test results. 

 

2 hours ago, GFinDC said:

Gliadin Peptide Ab, IgA = 20 / should be <20

 

That is a positive result. Know how I know? Learned that little piece of information in grade school in math class. This mark:

<

preceding any number means less than; it does not mean = to. Thus, <20 means any result below 20 is a negative result (that would be 0 through 19) and any result that is equal to or greater than 20 is a positive result. 

I say fine, do whatever you want to do; it's your life and your health and you will be paying the piper, not us. You are adamant in your beliefs and nothing anyone has said or linked you to has changed your mind so go ahead & do what you seem to want us to tell you to do. Don't have the endoscopy & find out for sure if you are celiac or not. Instead go your route & go gluten free for a few years & then have a little bit of gluten now & again. I hope it doesn't kill you.

[GFinDC]

1 hour ago, casuallythere said:

Can you please look at this response below? Why are you both saying two different things?

This is why I am so confused. I have one person saying I don't have it and one person saying I do. It is a weak positive and I have heard that blood tests alone cannot gurantee you a diagnosis. Only multiple biopsy's can, not just one. 

I also have two different Doctor's saying something different as well. Primary Doctor says mine is weak positive and that I should go gluten free and my GI says stay on Gluten and lets do a Biopsy.

I could be in between right now, and just having a Gluten Intolerance and Celiac has not been activated. I have researched a lot of this and Celiac has to be triggered and activated for you to have it. I do not have any of the other symptoms for Celiac except the minor ones. I am not loosing weight, in pain, etc...

Please both of you expound on your answers to clarify more. Thank you.

Hi CT,

I am not TexasJen, so can only guess.  You posted a long list of test results with only one little line underlined.  That little underlined row of text was hard for me to pick out from the rest of the results.  So I am guessing TexasJen may have missed it like I did at first.  Maybe they'll look again and see the one positive result out of all those years of test results.

There are no guarantees in life.  You choose your path and hope for the best.  If you are smart you also pray about it and ask for help from someone much wiser than you (The Lord God Almighty).

You've had repeated celiac disease blood testing for years.  More than most people I'd say.  Then when you get a positive result you reject it and look for a reason it can't be true.  If you are having such a hard time accepting the results then maybe you should go through the full testing process.  Or make a decision and stick with it.  Whatever that decision is.  We can't make your decision for you.

I've expounded enough for you to understand and more.  I am not going to go over the reason not to cheat on the gluten-free diet again.  Except to say it is just a bad idea from the get go.  If your dad was diabetic would you advise him to cheat on his diet?  Maybe you should take a break from thinking about celiac for a while and let your mind sort things out?  That might help.  I will tell you that celiac disease can affect the brain just like it can affect any other part of the body.  I was stuck with circular thinking for a while not being able to break out of the arguments I had within myself.  Now after being gluten-free I am free of that problem.  I find it much more satisfying to argue with people like KarenG now.

Life isn't always fun.  But we can adapt and carry on.

[TexasJen]

Well, I did miss the Gliadin antibody test listed and saw only the multiple high total IgA levels.  

So, I guess technically that's positive, but considering how borderline the result is I am not sure I would feel comfortable committing to a gluten free life without the biopsy. Once you go gluten free, you can't go back and do the biopsy easily.  As others have said, it's your life, so you ultimately have to make the final choice.  

Maybe because I am struggling a bit with how strict to be with a gluten free life, the strict gluten free celiac life seems a bit overwhelming at the moment. I have seen a study that suggested that a celiac diet is the second most burdensome diet next to people on dialysis. So, committing to that without confirming seems easy now but commits you to a life of hardship that may be unnecessary.

Good luck on your decision.

[casuallythere]

3 hours ago, Ennis_TX said:

You will not even notice the biopsy as they only take a very tiny amount.

 I know how I personally react, a lot of us have very serious symptoms and reactions. You seem to be a silent celiac. One where your symptoms are not as pronounced, it is one of the kinds out there. But as you can imagine  those of use that do have very violent reactions, to it, and it used to be much less, well we sorta look at you with a odd look. No offense, I am both envious of your reactions, and at the same time disturbed that you would think cheating would be alright. But I had that light beat me near to death and traumatize the living frack out of me. This whole "Oh But a little bit WON'T hurt" is total bull sh*t for those of us that have the violent reactions, and we get this enough out in public, and hearing it here is going to get you a general feeling of animosity (Trust me I wish to punch people in public that say that crap after what I have been through). Think of it like someone with a peanut allergy who has to use a ebi pen or end up dying on the floor, do you think they find joking about, it or pushing peanut butter on them is going to go well?

Growing up my symptoms where tolerable, in hindsight I debate if I should have enjoyed it back then or changed over to prevent myself from being in my current state. Many of us would choose to go back in time and remove gluten from our diet sooner to prevent some of the complications that developed. The whole crash thing is pretty much the backwards. One day it just goes over the top and flips and attacks everything more so, how it was for me slowly crept up then one day all of a sudden full on bed ridden, brain fried, constant issues everything just cascaded in a few months to much much worse. Everyone is very different on how it effects them and sometimes it stays silent for years then something triggers it. Others never have the major problems, while we also have the group that have been fighting it since they were born.

I get the whole overwhelming feeling of this life changing disease, but I personally insist you look at long term. Sure you might get more complications and you might not. You might be fine for years, or it could jump up and rip you a new one like it did me. Everyone is different, the choice in the end is yours.

I really appreciate your input. I get what you are saying. Why risk anything if you do not have to. Based on what you are saying you are helping me decide on not introducing gluten in my system every again. I would not want to one day wake up and trigger a random symptom that changes my life forever over something that now a days, not like when my dad first had a gluten problem where it was much harder. There is so many options now that this shouldn't be a problem. I was just at Starbucks and their deserts at the register said "Gluten Free". Really? I was like wow. Plus I just got like 4-5 pizzas that were gluten free!

3 hours ago, squirmingitch said:

I am with GFinDC's interpretation of your test results. 

 

That is a positive result. Know how I know? Learned that little piece of information in grade school in math class. This mark:

<

preceding any number means less than; it does not mean = to. Thus, <20 means any result below 20 is a negative result (that would be 0 through 19) and any result that is equal to or greater than 20 is a positive result. 

I say fine, do whatever you want to do; it's your life and your health and you will be paying the piper, not us. You are adamant in your beliefs and nothing anyone has said or linked you to has changed your mind so go ahead & do what you seem to want us to tell you to do. Don't have the endoscopy & find out for sure if you are celiac or not. Instead go your route & go gluten free for a few years & then have a little bit of gluten now & again. I hope it doesn't kill you.

I understand the results. However, I just spoke with my dad about this. Here is our theory.

There is obviously two types of gluten problems here.

1. Allergy version to gluten, like the peanut allergy

2. Celiac version to gluten, like damaging your internal system over time.

I believe I have the gluten intolerance or even Celiac Version to where you can have small amounts of gluten. If you have the allergy version, you can't have a spec of it.

I will be researching this more.

My dad has been off gluten for years now, and has re-introduced gluten in his diet in very small amounts, he hasn't died yet.

2 hours ago, GFinDC said:

Hi CT,

I am not TexasJen, so can only guess.  You posted a long list of test results with only one little line underlined.  That little underlined row of text was hard for me to pick out from the rest of the results.  So I am guessing TexasJen may have missed it like I did at first.  Maybe they'll look again and see the one positive result out of all those years of test results.

There are no guarantees in life.  You choose your path and hope for the best.  If you are smart you also pray about it and ask for help from someone much wiser than you (The Lord God Almighty).

You've had repeated celiac disease blood testing for years.  More than most people I'd say.  Then when you get a positive result you reject it and look for a reason it can't be true.  If you are having such a hard time accepting the results then maybe you should go through the full testing process.  Or make a decision and stick with it.  Whatever that decision is.  We can't make your decision for you.

I've expounded enough for you to understand and more.  I am not going to go over the reason not to cheat on the gluten-free diet again.  Except to say it is just a bad idea from the get go.  If your dad was diabetic would you advise him to cheat on his diet?  Maybe you should take a break from thinking about celiac for a while and let your mind sort things out?  That might help.  I will tell you that celiac disease can affect the brain just like it can affect any other part of the body.  I was stuck with circular thinking for a while not being able to break out of the arguments I had within myself.  Now after being gluten-free I am free of that problem.  I find it much more satisfying to argue with people like KarenG now.

Life isn't always fun.  But we can adapt and carry on.

Now we are getting somewhere here. I recently graduated from college with over a 4.0. I took a few courses on Philosophy and learned about circular reasoning. I believe you are 100% right here. Regardless of the situation and the exact answer right here and now. I probably need to step back, go gluten free for a while and re-visit all of this like I did last time. I mean this is a very old thread and I haven't posted anything in like 2 years.

I'll probably consult the clinical doctor in regards to gluten and celiac and go from there.

After I take a break I'll re-visit and research whether I can re-introduce gluten or not, but in the meantime I'm going 100% off gluten without a Biopsy. I'm done with major gluten period.

I am a Christian and 100% support prayer. Thank you for that.

[casuallythere]

1 minute ago, TexasJen said:

Well, I did miss the Gliadin antibody test listed and saw only the multiple high total IgA levels.  

So, I guess technically that's positive, but considering how borderline the result is I am not sure I would feel comfortable committing to a gluten free life without the biopsy. Once you go gluten free, you can't go back and do the biopsy easily.  As others have said, it's your life, so you ultimately have to make the final choice.  

Maybe because I am struggling a bit with how strict to be with a gluten free life, the strict gluten free celiac life seems a bit overwhelming at the moment. I have seen a study that suggested that a celiac diet is the second most burdensome diet next to people on dialysis. So, committing to that without confirming seems easy now but commits you to a life of hardship that may be unnecessary.

Good luck on your decision.

Thank you for replying and double check. I really appreciate it.

Well I live in an extremely highly populated area with a lot of huge new grocery stores that have massive gluten free sections within the store. I also have many restaurants that have gluten free options. I do not plan to move and there are many jobs available if I need to get a different job.

I agree that might be a good option, however, I did a Genetic Test and I have the Gene to where I could develop Celiac. Regardless if the Biopsy came back positive or negative I would avoid Gluten. I do not want to develop celiac in the future. 

The only debate left is the part of the strict diet verses cheating just a little. Of course everyone on here is die hard gluten free to which I respect and understand 100%. However I do not see much people giving respect to other people that might not have as sever reaction to it to others for whatever reason.

I will probably be contacting a clinical gluten doctor and university over this and ask them what is their professional opinion.

Do you live in a city to where the options are much harder? If that is the case I could see it being much harder.

However until I feel I have enough concrete evidence I believe you can cheat a tiny bit after you heal 100%

I believe people try to scare you to the max, like Doctors, think of it this way. If you want someone to do something you tell them worse case scenario to they will actually do it. If you tell them anything less, and give them an inch they will take a yard. Because most people are to lazy and monitor exact dosages or be careful. They will just go back to their lazy state and just eat tons and tons of gluten.

However you are going to have to really prove to me that if someone heals all of their villi, goes gluten free for 3-4 years, feel amazing, and has one piece of pizza, they are going to die. I think not.

I think this needs to be researched more.

 

 

[casuallythere]

Update!

Someone mentioned on another forum about "Silent Celiac" this is exactly what I was needing in order to complete my research. Here is a great article about it.

Open Original Shared Link

Please read this if you are on the fence, but this is exactly what I was trying to say.

Of course, he recommends to stay on a gluten free diet however, he says in the end its a Gamble. Its up to you. You could eat gluten once or twice a month and never get cancer, or develop something worse or you could. However, this is life, you could get cancer at any time, or get hit by a car, or smoke and get cancer or not. 

I agree with everyone, be as safe as possible, however everyone's risk tolerance is different, and I think people should respect that. If I want to increase my risk a little I should be able to do that without being criticized.

However I really appreciate everyone's help! Thank you!

[GFinDC]

1 hour ago, casuallythere said:

I really appreciate your input. I get what you are saying. Why risk anything if you do not have to. Based on what you are saying you are helping me decide on not introducing gluten in my system every again. I would not want to one day wake up and trigger a random symptom that changes my life forever over something that now a days, not like when my dad first had a gluten problem where it was much harder. There is so many options now that this shouldn't be a problem. I was just at Starbucks and their deserts at the register said "Gluten Free". Really? I was like wow. Plus I just got like 4-5 pizzas that were gluten free!

I understand the results. However, I just spoke with my dad about this. Here is our theory.

There is obviously two types of gluten problems here.

1. Allergy version to gluten, like the peanut allergy

Wrongo, allergies are an IgE immune response.

2. Celiac version to gluten, like damaging your internal system over time.

Celiac is an IgA or IgG immune response.

I believe I have the gluten intolerance or even Celiac Version to where you can have small amounts of gluten. If you have the allergy version, you can't have a spec of it.

I will be researching this more.

My dad has been off gluten for years now, and has re-introduced gluten in his diet in very small amounts, he hasn't died yet.

Now we are getting somewhere here. I recently graduated from college with over a 4.0. I took a few courses on Philosophy and learned about circular reasoning. I believe you are 100% right here. Regardless of the situation and the exact answer right here and now. I probably need to step back, go gluten free for a while and re-visit all of this like I did last time. I mean this is a very old thread and I haven't posted anything in like 2 years.

I'll probably consult the clinical doctor in regards to gluten and celiac and go from there.

After I take a break I'll re-visit and research whether I can re-introduce gluten or not, but in the meantime I'm going 100% off gluten without a Biopsy. I'm done with major gluten period.

I am a Christian and 100% support prayer. Thank you for that.

Praise God!   I figured you for a Christian.  We can be an obnoxious bunch can't we?

 

Now we are getting somewhere indeed!

Open Original Shared Link

I don't see where anyone told you that you would die instantly or automatically get a terrible disease if you cheat on the gluten-free diet.  You are exploring the idea of a self-correcting plan IMHO.  If you cheat in the future and have celiac disease, you will most likely experience symptoms that will make you wish you hadn't cheated.  And therefore if you have a bit of common sense, you'll stop cheating.  If you expect us to tell you that it is ok to cheat on the gluten-free diet and harm your body, you are barking up the wrong tree.  Why should we do that?  Never mind, I know the answer.  There is no good reason for anyone to cheat on the gluten-free diet if they know it causes harm to their body.  Temptation is not a good reason.

There have been forum members who cheated on the gluten-free diet before.  One cheated for 5 years and then had to have an emergency colostomy done.  She came to the forum and warned everyone what a mistake it had been and that she would never eat gluten again.  Somewhere there is a whole thread on cheating on the diet if you want to read it.  Would you tell an alcoholic to cheat on their diet?   Why not?  If not why do you think you are some special exception and it is ok for you?

Just because we don't tell you what you want to hear doesn't mean we are telling you wrong things.

Going gluten-free for life is a big change.  Nobody said it was easy.  If you are celiac, the alternative of continuing to eat gluten is a slow progression of illness and eventual death.

Sometimes people on the forum go back on gluten for testing, called a gluten challenge.  And  sometimes they report new symptoms that don't go away and make them more miserable than before.  A gluten challenge is 12 weeks of eating gluten.

Occasional cheating, while not recommended, may not cause big problems right away.  But nobody can guarantee it won't at some point.  If you want to play Russian roulette with your health, nobody can stop you.  Nobody, but you.

[casuallythere]

25 minutes ago, GFinDC said:

Now we are getting somewhere indeed!

Open Original Shared Link

I don't see where anyone told you that you would die instantly or automatically get a terrible disease if you cheat on the gluten-free diet.  You are exploring the idea of a self-correcting plan IMHO.  If you cheat in the future and have celiac disease, you will most likely experience symptoms that will make you wish you hadn't cheated.  And therefore if you have a bit of common sense, you'll stop cheating.  If you expect us to tell you that it is ok to cheat on the gluten-free diet and harm your body, you are barking up the wrong tree.  Why should we do that?  Never mind, I know the answer.  There is no good reason for anyone to cheat on the gluten-free diet if they know it causes harm to their body.  Temptation is not a good reason.

There have been forum members who cheated on the gluten-free diet before.  One cheated for 5 years and then had to have an emergency colostomy done.  She came to the forum and warned everyone what a mistake it had been and that she would never eat gluten again.  Somewhere there is a whole thread on cheating on the diet if you want to read it.  Would you tell an alcoholic to cheat on their diet?   Why not?  If not why do you think you are some special exception and it is ok for you?

Just because we don't tell you what you want to hear doesn't mean we are telling you wrong things.

Going gluten-free for life is a big change.  Nobody said it was easy.  If you are celiac, the alternative of continuing to eat gluten is a slow progression of illness and eventual death.

Sometimes people on the forum go back on gluten for testing, called a gluten challenge.  And  sometimes they report new symptoms that don't go away and make them more miserable than before.  A gluten challenge is 12 weeks of eating gluten.

Occasional cheating, while not recommended, may not cause big problems right away.  But nobody can guarantee it won't at some point.  If you want to play Russian roulette with your health, nobody can stop you.  Nobody, but you.

Thank you for all of your help.

Getting close to my last questions...

Now that I am going 100% gluten free, how do I keep my grain diet in check. I was reading in this article that some people can feel tired. I think I have even felt this a little. Because they are not getting their balance diet of grains.

Open Original Shared Link

Is there a grain that is safe? What can you buy that you can eat to replace that nutrition that you can no longer it?

[GFinDC]

The grain industry promotes the idea that you need grains to get proper nutrition.  This is false.  Eat a diet of whole foods including meats, veggies, nuts. eggs. maybe a little fruit.  No grains are essential nutrients.  There are alternative grain like flours people do eat as substitutes.  Some are amaranth, coconut flour, millet flour, bean flour, potato flour, rice flour, corn flour, etc.  These substitute flours are used so people can make baked goods like what the GE's (gluten eaters) eat.  We don't talk to those people.  Kidding!

If you listen to the grain industry advertising, you may believe you are in terrible shape without Wheaties every morning.  Not true.  What is true however is that many gluten-free baked goods are lower in nutrition than their gluten counterparts.  This is partly because the gluten-free baked goods aren't required to add vitamins to their products (yet) like grain industry products have to.  Grain industry products were regulated to add those nutrients because their refined flours were worthless carbs and fluff.  They do rise nicely when baked though (due to gluten).

If you depend on regular white gluten bread for your vitamins you are basically eating a vitamin pill for your needs.  Real whole foods are the proper place to get vitamins and minerals that our bodies need.  Multivitamins aren't a bad thing, I take one myself.  But trying to replace nutrition from baked gluten goods is essentially trying to replace a vitamin pill.  Read the ingredients on the packages to see.

[Jmg]

18 hours ago, casuallythere said:

The only thing left to debate is the conversation in the other thread of mine is about whether I can have a spec of it here or there when my villi full heals. I believe I can but everyone gets upset here when I say that.

As someone who tested negative for celiac but reacts to microscopic quantities of gluten I would never knowingly ingest any gluten but you're by no means the only person who feels this way. I know a diagnosed celiac for example who drinks lager because 'my stomach has healed now'.  If you're celiac of course then the science is very much against you and him as others have said above. You're free to ignore it but do expect to be challenged on those views here because there are people with greater knowledge and experience and false statements should be challenged before they cause harm to others. Nothing personal in it and ultimately you remain free to make your own informed decisions on your health 

If you're going to adopt a mix and match approach to the gluten free diet however it's very important that you never self categorise yourself as celiac or I would argue as gluten intolerant / sensitive. When people see individuals such as yourself saying 'I'm normally gluten free but as it's a special occasion / such a great pizza / just a small slice / second tuesday in a month etc. I'll make an exception' they may draw erroneous conclusions about the medical importance of excluding gluten for others. That's very damaging to the reputation of those following the diet strictly and potentially may cause restaurant staff to fail to treat others requests seriously.

So I'd argue you have a responsibility to make your own particular status and approach clear and differentiate yourself from those that have to follow the diet strictly. If on the other hand you're actually celiac and just one of those people that slip through the diagnostic net then you should be aware that you're  potentially taking a risk and going against the scientific consensus. 

Best of luck with your ongoing diagnostic adventure!

 

[casuallythere]

20 hours ago, GFinDC said:

This is probably what is usually called the DGP IgA test.  If the range is correct and less than 20 is normal, then your result of 20 is above normal.  That would mean you are having an abnormal IgA immune reaction to gliaden.  Which means you have celiac disease, if there is corresponding villi damage.  The DGP igA test is very specific to the gliaden protein fragment that is involved in celiac reactions.  Having only one immune test positive is enough for celiac damage to occur.

 

20 hours ago, Ennis_TX said:

It does look like mixed results but I seeing it as a positive when I read it. I suggest staying on gluten for a bit and getting the endoscope and biopsies done. This is the standard and there is no reason to stop only half finished. Once you get the full diagnoses I would then suggest going gluten-free, and working out your issues from there.

 

18 hours ago, squirmingitch said:

I am with GFinDC's interpretation of your test results. 

 

That is a positive result. Know how I know? Learned that little piece of information in grade school in math class. This mark:

<

preceding any number means less than; it does not mean = to. Thus, <20 means any result below 20 is a negative result (that would be 0 through 19) and any result that is equal to or greater than 20 is a positive result. 

I say fine, do whatever you want to do; it's your life and your health and you will be paying the piper, not us. You are adamant in your beliefs and nothing anyone has said or linked you to has changed your mind so go ahead & do what you seem to want us to tell you to do. Don't have the endoscopy & find out for sure if you are celiac or not. Instead go your route & go gluten free for a few years & then have a little bit of gluten now & again. I hope it doesn't kill you.

 

15 hours ago, TexasJen said:

Well, I did miss the Gliadin antibody test listed and saw only the multiple high total IgA levels.  

So, I guess technically that's positive, but considering how borderline the result is I am not sure I would feel comfortable committing to a gluten free life without the biopsy. Once you go gluten free, you can't go back and do the biopsy easily.  As others have said, it's your life, so you ultimately have to make the final choice.  

Maybe because I am struggling a bit with how strict to be with a gluten free life, the strict gluten free celiac life seems a bit overwhelming at the moment. I have seen a study that suggested that a celiac diet is the second most burdensome diet next to people on dialysis. So, committing to that without confirming seems easy now but commits you to a life of hardship that may be unnecessary.

Good luck on your decision.

 

1 hour ago, Jmg said:

As someone who tested negative for celiac but reacts to microscopic quantities of gluten I would never knowingly ingest any gluten but you're by no means the only person who feels this way. I know a diagnosed celiac for example who drinks lager because 'my stomach has healed now'.  If you're celiac of course then the science is very much against you and him as others have said above. You're free to ignore it but do expect to be challenged on those views here because there are people with greater knowledge and experience and false statements should be challenged before they cause harm to others. Nothing personal in it and ultimately you remain free to make your own informed decisions on your health 

If you're going to adopt a mix and match approach to the gluten free diet however it's very important that you never self categorise yourself as celiac or I would argue as gluten intolerant / sensitive. When people see individuals such as yourself saying 'I'm normally gluten free but as it's a special occasion / such a great pizza / just a small slice / second tuesday in a month etc. I'll make an exception' they may draw erroneous conclusions about the medical importance of excluding gluten for others. That's very damaging to the reputation of those following the diet strictly and potentially may cause restaurant staff to fail to treat others requests seriously.

So I'd argue you have a responsibility to make your own particular status and approach clear and differentiate yourself from those that have to follow the diet strictly. If on the other hand you're actually celiac and just one of those people that slip through the diagnostic net then you should be aware that you're  potentially taking a risk and going against the scientific consensus. 

Best of luck with your ongoing diagnostic adventure!

 

Check this article out:

Open Original Shared Link

Gliadin Tests for Celiac Disease

The first antibodies to gliadin that were used for celiac disease testing are called antigliadin, or AG, antibodies, which are available in both IgA and IgG forms. Most diagnostic laboratories run AG tests for both types of antibodies.

More recently, researchers found that the body makes IgA and IgG antibodies to a form of gliadin called deamidated gliadin peptide, or DGP. Some laboratories are starting to test for these antibodies, too. These new DGP tests seem to be more accurate than the older generation of AG tests.

In adults, AG antibody tests are no longer recommended, as they are not very likely to correctly predict the findings of intestinal biopsies, with both false negative and false positive results. AG tests are reported to be elevated in quite a few other conditions, including Crohn’s disease, small intestinal bacterial overgrowth, food intolerances (including gluten sensitivity without celiac disease) and irritable bowel syndrome. AG tests may even be elevated in healthy individuals.

The DGP antibodies seem to be more accurate than the AG tests, with fewer false positive results than the TTG IgA test. However, at this time, the DGP antibodies are not routinely available for clinical use.

Note:

What this tells me is exactly what I thought. You can not be diagnosed with Celiac without a Biopsy. Also Like I said if you read the whole article you have to be deficient in your levels for you to have Celiac, not increased and ramped up like mine. My body is still fighting and trying. Not sure for how much longer but I can try to help relieve the stress of fighting asap!

Let me know what you think!

[casuallythere]

Also ... For whoever else might be wondering ...

Open Original Shared Link

• Total Open Original Shared Link Some people have low total IgA. If you are deficient in Total IgA, the other tests involving IgA are invalidated.
• tTG IgA (Anti-tissue Transglutaminase) This is very strongly correlated with celiac disease, however, some people with diseases such as Type 1 Diabetes, Hashimoto’s thyroiditis, HIV, and autoimmune liver conditions can have a Open Original Shared Link. Those conditions all have a higher incidence in celiacs, though, so there is a chance you may have both conditions.
• EMA IgA (Anti-endomysial Antibody) This test is Open Original Shared Link. If these levels are elevated it’s celiac! However, this test is not as sensitive as tTg IgA
• AGA IgA (Antigliadin IgA antibodies) Positive results indicate intolerance, and potential for celiac. Is being repaced by DGP IgA
• AGA IgG (Antigliadin IgG antibodies) Positive results indicate intolerance, and potential for celiac. This may be positive in people with low Total IgA.
• DGP (anti-Deamidated Gliadin Peptide) IgA This is a newer test. It is more specific to celiac disease than the tTG and AGA tests, and can Open Original Shared Link
• DGP (anti-Deamidated Gliadin Peptide) IgG This is a newer test, replacing AGA IgG

This is what I was wanting. To know exactly how to read my results. You have to get a Biopsy to know for sure like everyone was saying.

[TonyDexter]

20 hours ago, squirmingitch said:

That is a positive result. Know how I know? Learned that little piece of information in grade school in math class. This mark:

<

preceding any number means less than; it does not mean = to. Thus, <20 means any result below 20 is a negative result (that would be 0 through 19) and any result that is equal to or greater than 20 is a positive result. 

though technically you are right (and assuming we are talking integer numbers, and assuming the opening post (or his source) did his job right not to confuse <= and <, which happens all the time), the situation is a bit more complex if you look at it from the probability theory perspective. Because of natural variation, a single numerical test that gives a borderline value should not be used to give definite answer because if you make 100 of those tests, you can expect 60% of those giving a positive result of 20 or more, the other 40% (most likely more) will be negative.

I am also sceptical about < and <= confusion. The thing is, people who are not really into math like to simplify things and <= often eventually transforms into < if you let people play around with it. Some people just hate this "including or disincluding" stuff.

[casuallythere]

59 minutes ago, TonyDexter said:

though technically you are right (and assuming we are talking integer numbers, and assuming the opening post (or his source) did his job right not to confuse <= and <, which happens all the time), the situation is a bit more complex if you look at it from the probability theory perspective. Because of natural variation, a single numerical test that gives a borderline value should not be used to give definite answer because if you make 100 of those tests, you can expect 60% of those giving a positive result of 20 or more, the other 40% (most likely more) will be negative.

I am also sceptical about < and <= confusion. The thing is, people who are not really into math like to simplify things and <= often eventually transforms into < if you let people play around with it. Some people just hate this "including or disincluding" stuff.

Thank you, my point is that usually more symptoms, or other levels are evident if Celiac is Present. I believe what is debate here is that some people have Gluten Intolerance that could or could not turn into Celiac in the future.

I believe most people on this forum just want to play it safe and say hey, if my gut is under attack, whether you eat gluten and have an intolerance or celiac, get off gluten.

I agree with this because this is what I am going to do. Whether I have an intolerance or celiac, I am getting off gluten because it is hurting me regardless.

Whether I want to do a biopsy or not, is my choice, I know enough that I want to get off gluten and stay off it.

After I relax, stay off it for a while, I'll research later so I don't go into a circular reasoning trap, about possibly introducing a little gluten here and there. I believe you have to research your own personal results and reactions to your own body to decide whether this is right for you or not, and of course doing this at your own risk... Like smoking or drinking...

But if I had to guess, I will be going on a strict gluten free diet.

[cyclinglady]

1 hour ago, casuallythere said:

Also ... For whoever else might be wondering ...

Open Original Shared Link

• Total Open Original Shared Link Some people have low total IgA. If you are deficient in Total IgA, the other tests involving IgA are invalidated.
• tTG IgA (Anti-tissue Transglutaminase) This is very strongly correlated with celiac disease, however, some people with diseases such as Type 1 Diabetes, Hashimoto’s thyroiditis, HIV, and autoimmune liver conditions can have a Open Original Shared Link. Those conditions all have a higher incidence in celiacs, though, so there is a chance you may have both conditions.
• EMA IgA (Anti-endomysial Antibody) This test is Open Original Shared Link. If these levels are elevated it’s celiac! However, this test is not as sensitive as tTg IgA
• AGA IgA (Antigliadin IgA antibodies) Positive results indicate intolerance, and potential for celiac. Is being repaced by DGP IgA
• AGA IgG (Antigliadin IgG antibodies) Positive results indicate intolerance, and potential for celiac. This may be positive in people with low Total IgA.
• DGP (anti-Deamidated Gliadin Peptide) IgA This is a newer test. It is more specific to celiac disease than the tTG and AGA tests, and can Open Original Shared Link
• DGP (anti-Deamidated Gliadin Peptide) IgG This is a newer test, replacing AGA IgG

This is what I was wanting. To know exactly how to read my results. You have to get a Biopsy to know for sure like everyone was saying.

Nice to see that you are surfing the web and doing some research!  It probably would be better if you read more creditable medical sites from leading celiac groups or research centers instead of bloggers who might be trying to sell you something.  But the one you sited does contain some good facts.  Did you happen to read her other article about how she regrets making her son go gluten free without a proper diagnosis?

Open Original Shared Link

Granted some people have no choice (for many reasons), but to try the gluten-free diet.  But you seem to have good medical access.  Obtaining a endoscopy would not be impossible for you.  I understand that your current test results are not clear.  A biopsy could help you and your doctors determine if you have active celiac disease.  In the event the biopsy is negative, you can continue to consume gluten, but continue to get tested every few years (like you have been) as celiac disease can develop at any time.  Only you and your doctors can determine the best course of action.  

On a side note, since when have colleges started to weigh final transcript grades?  The max you can get is a 4.0.  

[casuallythere]

1 hour ago, cyclinglady said:

Nice to see that you are surfing the web and doing some research!  It probably would be better if you read more creditable medical sites from leading celiac groups or research centers instead of bloggers who might be trying to sell you something.  But the one you sited does contain some good facts.  Did you happen to read her other article about how she regrets making her son go gluten free without a proper diagnosis?

Open Original Shared Link

Granted some people have no choice (for many reasons), but to try the gluten-free diet.  But you seem to have good medical access.  Obtaining a endoscopy would not be impossible for you.  I understand that your current test results are not clear.  A biopsy could help you and your doctors determine if you have active celiac disease.  In the event the biopsy is negative, you can continue to consume gluten, but continue to get tested every few years (like you have been) as celiac disease can develop at any time.  Only you and your doctors can determine the best course of action.  

On a side note, since when have colleges started to weigh final transcript grades?  The max you can get is a 4.0.  

I have been reading the official stuff as well. Thank you for making sure. However, I wanted a layman's interpretation, general idea of how to think about it. I believe that blogger broke it down nicely.

Yes I have good access to doctors in a large city, and have great insurance because I am currently working. I am thankful to God for that. I do work very hard though. However, here is the deal. You make an excellent point.

Celiac Disease can develop at any time!!!

This is enough information for me that I will not be needing a Biopsy. Period. Even if I got a Biopsy and it was negative I would go on a strict gluten free diet. I got the test that I wanted and that was the $700.00 Genetic Test that was covered through my insurance. It shows that I have 1 of the 2 genes to develop Celiac Disease.

I would not want to take the risk of developing Celiac Disease in the future in any circumstances.

So I am in agreement with 99% of all information that everyone has given me. And have made my final decision. To me it doesn't matter if I have Celiac Disease or not right this second. I am going gluten free.

The only thing that everyone hates is my theory. Which I will research in more depth later. I believe that if you go gluten free for 3-4 years. Heal your villi completely, and your entire gut and system. If you are not allergic to Gluten like some people on this forum, you can re-introduce small amounts of Gluten into your system.

I believe the confusion here is the different types of Celiac Disease or Gluten Intolerance, which is causing all of the confusion. This I have read from official sites. Like for example there are some people that have "Refractory Celiac Disease Type II" which proves there are different levels. So if there are worse levels there can be less worse levels, or lease than average worse levels. The medical community just always wants to paint the worse possible picture to prevent people from taking advantage of their situation.

I am not a Doctor, nor do I want to steer anyone in the wrong direction. All I am saying is that this disease is still so new that Doctor's don't even understand it. I have read places from clinical doctors that care a lot seeing people get miss diagnosed all the time, creating worse problems.

The problem here is blatant disregard to gluten intake in ones own body. However, I believe if you get your gluten intake under 100% under control. You can be the judge to realize what you can and cannot do ultimately.

There is just no way you take 1 person that is eating gluten like a mad dog, pizza, pasta, subs, deserts, THEN eliminates 99% of that gluten intake or 100% in fact. Then possibly has a beer here and there after fully healing once in a blue moon like other members on this forum he is going to develop cancer, another disease, etc.

No. I think not. I believe his system turns on, fights a little bit and when the beer exits his system, the system calms back down. Not enough to activate Celiac or Destroy his whole body.

Again. Like I said this is just how I feel, and I will research this more later.

And in regards to your question about 4.0, some colleges use cumulative GPA. For Example.

Many schools have a + and - grading scale.
Ex. A+ =4.33 points, A =4.0 points, A- =3.67 points, and so-on

Therefore and A+ is more than an A, and an A- is actually a B. Yes which is weighted.

[cyclinglady]

Dang, back in my day....high school or college, the highest GPA you could get was a 4.0 whether you took  a remedial class or honors.  I guess it still bugs me that my youngest brother graduated from high school with a higher GPA than me (they went to a weighted system when he went to HS school) ?.  

Anyway, good luck to you.  I disagree with your logic, but we each have to do what is best for us as individuals.  ?

[casuallythere]

7 minutes ago, cyclinglady said:

Dang, back in my day....high school or college, the highest GPA you could get was a 4.0 whether you took  a remedial class or honors.  I guess it still bugs me that my youngest brother graduated from high school with a higher GPA than me (they went to a weighted system when he went to HS school) ?.  

Anyway, good luck to you.  I disagree with your logic, but we each have to do what is best for us as individuals.  ?

I did want to thank you and everyone else. I really appreciate it. I can be a little stubborn. I am sure you and everyone else is right and I am wrong. However, right at this moment our agreeing to disagree actually doesn't matter because I am going on a 100% gluten free strict diet for a few years.

When I get to the point in a few years about "thinking about" re-introducing gluten, hopefully there will be a cure, major break through, or a lot more information. Will see.

Again I have seen you post all over this website and I am sure we are all very thankful. I wish you and everyone else the best. I'm sure will keep everyone posted!

God Bless.