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Celiac Test Done: High IGA and IGM Levels: Is This Precursor to ...

Kyla

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I may have been unclear. What I meant was that it has nothing to do with the sort of antibody tests to gliadin being mentioned or total IgA levels. The standard screening test is the anti-tissue transglutaminase test as I indicated before and indicated in that website. But even that is not worth doing unless the person actually has relevant symptoms. Coeliac disease can be diagnosed without it (as the site indicates) and I suspect the diagnosis should remain even if the test is negative if the classic features are present.
Actually the 'classic' GI symptoms are only present in about 30% of adults with a confirmed Celiac diagnosis, and no gastroenterologist will diagnose Celiac disease in adults without a positive biopsy unless their antibody levels are off the charts high .
I'm harping on the details of this because celiac is one of the things that is supposed to be ruled out before people are given an ME diagnosis, and It seems most doctors are not doing this - particularly if patients don't appear to fit the old ideas of what celiac looks like - ie if the patient is not underweight and doesn't have diarrhea.

The most common symptoms in adults (when the selection isn't skewed to patients presenting with GI symptoms) are things like joint pain, fatigue and iron-deficiency anemia - all of which can masquerade as ME. there are also a significant minority of Celiac patients who present with primarily or only neurological or neuro-psychiatric symptoms such as ataxia, peripheral neuropathy - which obviously could also be mistaken for ME.

See for example:
https://www.ncbi.nlm.nih.gov/pubmed/26260366

http://www.dldjournalonline.com/article/S1590-8658(15)30028-1/abstract

https://www.ncbi.nlm.nih.gov/pubmed/23984314

http://www.scirp.org/journal/PaperInformation.aspx?paperID=66354
 

Kyla

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Yes please give me everything you have or help in any way you can. I guess my Doctor has no clue.

Here is my main question.

My dad never did a biopsy to actually confirm he has it 100%, however, he was on the floor screaming in pain in his gut, when he eliminated gluten, it was gone. He doesn't want to do the biopsy because it is to evasive.

I believe my levels are showing me that my body is sick and tired of gluten and it wants it out, I think a nurse on one of the forums told me that how gluten intolerance works is that your body, fights and fights it and one day finally gives up. If this is the case, why keep subjecting my body to this?

Here are my only two options.

1. Roll the dice and keep eating like i do, see if my levels break the barrier and and one day I have celiac, get confirmed that I do and then go 100% gluten free. However, from what I am hearing this could not be a good idea.

1. Option two, get off gluten right now, regardless of weather I have celiac right now or not, have better bowel movements, lose weight, get my cholesterol under control, feel better, and not worry about whether I will get it or not because I wont for sure because I will have eliminated the problem. I probably wont even order the genetic test, or do the biopsy because I pretty much know what the culprit is.

So ...

What do you think of these two options? I mean I probably still should bring my lab results to a specialist on use one of the website above for a consultation.
Hi @Astrongtower sure, I'll get back to you with some links in a little bit, I wore myself out with that last post ;)

Briefly for now:


From interacting with other Celiac patients, and from my own experience I would strongly urge you to go through the formal testing process for a few reasons:


- if you go off gluten now you may have a MUCH harder time going back on it if you ever need/want the formal diagnosis. Most people's reaction gets much stronger once they have healed a bit.

- if you want proper care for your celiac and associated complications from a gastroenterologist - who likely won't just take your word for it . As well as proper monitoring for the conditions that are often associated with it (vitamin deficiencies, osteoporosis, thyroid disease, diabetes, hyposplenism, etc....)

- the only current treatment is a very STRICTLY gluten free diet FOR LIFE. this includes watching out for trace amounts (cross-contamination) from both the foods themselves and the environments they are prepared in. and buying only certified/tested products from certain categories - eg grain / legumes / high risk products. it is both expensive and difficult, and eating in a restaurant becomes embarrassing and difficult. Since those with Celiac have damage from trace amounts (there are plentiful studies showing this) even in many cases in the absence of symptoms, it is important to avoid cross-contamination for Celiac, but not necessarily if you are non-celiac gluten-intolerant (by definition there is no structural damage or it would be Celiac). so for me this would be the main reason to find out for sure

- some countries also have tax rebates or discounts on prescribed gluten free food but only if you have a confirmed diagnosis

- there are several researchers/groups who claim they are close to a "cure" for Celiac. If this comes around you would need a formal diagnosis.

Obviously it is a totally personal choice, but those would be my reasons to go through the trouble.
 
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Hi @Astrongtower sure, I'll get back to you with some links in a little bit, I wore myself out with that last post ;)

Briefly for now:


From interacting with other Celiac patients, and from my own experience I would strongly urge you to go through the formal testing process for a few reasons:


- if you go off gluten now you may have a MUCH harder time going back on it if you ever need/want the formal diagnosis. Most people's reaction gets much stronger once they have healed a bit.

- if you want proper care for your celiac and associated complications from a gastroenterologist - who likely won't just take your word for it . As well as proper monitoring for the conditions that are often associated with it (vitamin deficiencies, osteoporosis, thyroid disease, diabetes, hyposplenism, etc....)

- the only current treatment is a very STRICTLY gluten free diet FOR LIFE. this includes watching out for trace amounts (cross-contamination) from both the foods themselves and the environments they are prepared in. and buying only certified/tested products from certain categories - eg grain / legumes / high risk products. it is both expensive and difficult, and eating in a restaurant becomes embarrassing and difficult. Since those with Celiac have damage from trace amounts (there are plentiful studies showing this) even in many cases in the absence of symptoms, it is important to avoid cross-contamination for Celiac, but not necessarily if you are non-celiac gluten-intolerant (by definition there is no structural damage or it would be Celiac). so for me this would be the main reason to find out for sure

- some countries also have tax rebates or discounts on prescribed gluten free food but only if you have a confirmed diagnosis

- there are several researchers/groups who claim they are close to a "cure" for Celiac. If this comes around you would need a formal diagnosis.

Obviously it is a totally personal choice, but those would be my reasons to go through the trouble.
I really, really appreciate your help. Thank you.

I think you make a very good point. I believe what you are saying is that:

1. I should probably call my Doctor back and get refereed to the GI Doctor in the same office
2. Talke to the GI Doctor about my IgA at 680 and my Peptide IgA at 20
3. Ask him to do a Celiac Biopsy while there is loads of Gluten in my system before I get off
4. Find out for 100% sure if I have celiac or not, and proceed from there.

Do this sound about right?

My only question would be at that point which to I believe the GI wouldn't even know the answer is. That if my Celiac Blood Panels are borderline, and my Biopsy comes back NEGATIVE, and since my father probably 99% sure has Celiac, wouldn't I still want to go gluten free to avoid of possibly getting celiac in the future because it runs in my family?

I guess the other thing I could do after I get the biopsy is get the Genetic Test Done and see if their is even a possibility of me getting it if my biopsy comes up NEGATIVE, and if it does I should probably eliminate gluten.

Am I missing anything, or does this look like the path I should take?

Here are some really, really good links that have been given to me if you don't already have them, but I will take more. You are right about a cure, might be close.

http://www.cureceliacdisease.org/

http://glutendoctors.blogspot.com/

http://glutendoctors.blogspot.com/2009/01/interpreting-lab-work-gluten-sensitive.html

http://www.ibsdiets.org/fodmap-diet/what-are-fodmaps/

https://enterolab.com/StaticPages/TestInfo.aspx#gene

https://labtestsonline.org/understanding/analytes/immunoglobulins/tab/test/

Thank you for helping me.
 

Kyla

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I really, really appreciate your help. Thank you.


1. I should probably call my Doctor back and get refereed to the GI Doctor in the same office
2. Talke to the GI Doctor about my IgA at 680 and my Peptide IgA at 20
3. Ask him to do a Celiac Biopsy while there is loads of Gluten in my system before I get off
4. Find out for 100% sure if I have celiac or not, and proceed from there.

Do this sound about right?

My only question would be at that point which to I believe the GI wouldn't even know the answer is. That if my Celiac Blood Panels are borderline, and my Biopsy comes back NEGATIVE, and since my father probably 99% sure has Celiac, wouldn't I still want to go gluten free to avoid of possibly getting celiac in the future because it runs in my family?

I guess the other thing I could do after I get the biopsy is get the Genetic Test Done and see if their is even a possibility of me getting it if my biopsy comes up NEGATIVE, and if it does I should probably eliminate gluten.

Am I missing anything, or does this look like the path I should take?

Here are some really, really good links that have been given to me if you don't already have them, but I will take more. You are right about a cure, might be close.

http://www.cureceliacdisease.org/

http://glutendoctors.blogspot.com/

http://glutendoctors.blogspot.com/2009/01/interpreting-lab-work-gluten-sensitive.html

http://www.ibsdiets.org/fodmap-diet/what-are-fodmaps/

https://enterolab.com/StaticPages/TestInfo.aspx#gene

https://labtestsonline.org/understanding/analytes/immunoglobulins/tab/test/

Thank you for helping me.
Hi @Astrongtower
yeah, that is pretty much what I was saying, although what I meant by positive tests was the gluten antibody tests - which I think you said were borderline high? sorry don't have the ability to reread whole thread.
Either way symptoms + 1st degree family history should be enough to get you a referral to a gastro.

Here are what I believe are used as the most current diagnostic guidelines in the States:
https://gi.org/guideline/diagnosis-and-management-of-celiac-disease/
The Chicago celiac disease center is a really good source of info, faqs etc, and seems to be well respected:
http://www.cureceliacdisease.org/

guidelines / testing are pretty similar worldwide as far as I know, but If you are in another country you might want to bring in local info from your country's celiac association or national guidelines - some doctors might only want the official ones from your own country

I obviously can't give you medical advice but if it were me I ask the gastroenterologist about getting the genetic test - it doesn't diagnose Celiac but if it is negative you never have to worry about developing it, and you could forgo the biopsy.
In terms of the stool test you mentioned earlier that is considered pseudoscience (no doctor will accept the result of that as diagnostic)

If the biopsy is negative you could obviously still try going gluten-free, but you would at least have all of the info from biopsy and genetic to know if it is celiac or gluten intolerance, and whether you need to monitor it in future.

hope that helps :)
 
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Hi @Astrongtower
yeah, that is pretty much what I was saying, although what I meant by positive tests was the gluten antibody tests - which I think you said were borderline high? sorry don't have the ability to reread whole thread.
Either way symptoms + 1st degree family history should be enough to get you a referral to a gastro.

Here are what I believe are used as the most current diagnostic guidelines in the States:
https://gi.org/guideline/diagnosis-and-management-of-celiac-disease/
The Chicago celiac disease center is a really good source of info, faqs etc, and seems to be well respected:
http://www.cureceliacdisease.org/

guidelines / testing are pretty similar worldwide as far as I know, but If you are in another country you might want to bring in local info from your country's celiac association or national guidelines - some doctors might only want the official ones from your own country

I obviously can't give you medical advice but if it were me I ask the gastroenterologist about getting the genetic test - it doesn't diagnose Celiac but if it is negative you never have to worry about developing it, and you could forgo the biopsy.
In terms of the stool test you mentioned earlier that is considered pseudoscience (no doctor will accept the result of that as diagnostic)

If the biopsy is negative you could obviously still try going gluten-free, but you would at least have all of the info from biopsy and genetic to know if it is celiac or gluten intolerance, and whether you need to monitor it in future.

hope that helps :)
Thank you very, very much. This is actually quite helpful. Sometimes someone breaking it down for you like you have for me is what someone needs. That is an excellent idea.

I will call my GI Doctor and request a Genetic Test. If it shows that I could have it, then I will probably do the biopsy, I am not worried about that procedure like my father is.

Like you said. After both of those tests, I should be able to re-evaluate my situation and make a much better decision verses just going Gluten Free based on hypothetical.

Thank you very much, I really appreciate you helping me think this through.
 
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Hi @Astrongtower
yeah, that is pretty much what I was saying, although what I meant by positive tests was the gluten antibody tests - which I think you said were borderline high? sorry don't have the ability to reread whole thread.
Either way symptoms + 1st degree family history should be enough to get you a referral to a gastro.

Here are what I believe are used as the most current diagnostic guidelines in the States:
https://gi.org/guideline/diagnosis-and-management-of-celiac-disease/
The Chicago celiac disease center is a really good source of info, faqs etc, and seems to be well respected:
http://www.cureceliacdisease.org/

guidelines / testing are pretty similar worldwide as far as I know, but If you are in another country you might want to bring in local info from your country's celiac association or national guidelines - some doctors might only want the official ones from your own country

I obviously can't give you medical advice but if it were me I ask the gastroenterologist about getting the genetic test - it doesn't diagnose Celiac but if it is negative you never have to worry about developing it, and you could forgo the biopsy.
In terms of the stool test you mentioned earlier that is considered pseudoscience (no doctor will accept the result of that as diagnostic)

If the biopsy is negative you could obviously still try going gluten-free, but you would at least have all of the info from biopsy and genetic to know if it is celiac or gluten intolerance, and whether you need to monitor it in future.

hope that helps :)
Please see below comments from another thread and let me know if you see anything that you would adjust. But I believe I know what I am going to do with my GI Doctor.

...

So here are some thoughts for you -

If you were on a "normal" gluten containing diet, and your Celiac antibody tests were negative or only slightly elevated, your GI might not want to continue to pursue a Celiac diagnosis. But, if you are having gastrointestinal issues, he may want to do a colonoscopy and endoscopy to check for other problems. While he is there, he will probably take samples to check for colitis & Celiac (but ask first to make sure & insist). If those are negative, that might be the end of his treatment.

There are other reasons besides Celiac for GI symptoms. Lactose intolerance is one. That's pretty common and I am sure you have heard of that.

Another reason is a FODMAPS issue - this is a common reason for non-Celiac gluten intolerance. I will find you a link shortly. It causes many of the same GI symptoms but the difference is that it does not cause an antibody reaction. People with FODMAP issues follow a gluten-free diet because wheat is a high FODMAP food. The difference between Celiac and FODMAP sensitivity is that a FODMAP sufferer can usually consume small amounts of wheat - so they can take a burger off a bun, have a bite of granny's famous cake, etc. They have to find their balance.



Just because you might not have Celiac now, doesn't mean it might not manifest in the future. I guess that is where the genetic test might help.

...

I haven't read the whole site, but this looks like good info on FODMAPS



http://www.ibsdiets.org/fodmap-diet/what-are-fodmaps/

...

See that is the thing, I am pushing my Doctor, my main doctor, because it seems that he is very non nonchalant. However, right in the same office their is a GI doctor that i see, and I know for a fact they could compare notes if they wanted to. I have seen both extensively.

When the nurse called me for the results, my doctor didn't even bother to call. All the nurse said was that I had a little high bad choloesteral and that I was border line on the celiac test. That is it. I had to probe her and tell her to ask the Doctor, what does that mean? Should I go off gluten, can I get celiac disease, should I just see my Doctor again in a year? what?

She got with the doctor and she called back and all she said was I have faxed you your results and since you are (20) top of the line for Gliadin Peptide Ab, IgA for <20, go doctor said go gluten free, and come back in six months. I mean come on. That is kind deal to go gluten free with just a casual call from the nurse.

I believe the Doctor doesn't really know what is going on. He originally said that my IgA of 680 is just an outlier before but my peptide was not out of range, now I have two factors out of rage, or close to it.

I think the answer is go to a specialist, get the genetic test, and probably have the biospy if I want to know 100 percent for sure.

I could also because I have read a lot that I could just go gluten free because I may be sensative to it and just feel 100% better anyway, and take no tests, I mean I would become much healthier because of it.

I am also thinking about contacting this person, I just bought her book.

http://glutendoctors.blogspot.com/2009/01/interpreting-lab-work-gluten-sensitive.html

Thank you for the info above, yes please give me all the information you have because I actually enjoy researching, but it does look like I need to find someone that knows exactly how to find the path between before celiac and having celiac, how to treat it, and what are my best options.

Because two things i know for sure, I have high Iga at 680 with normal high is 380, and peptide ab Iga at 20, with normal being <20. I would like to know what is causing this, or are the just outliers for me? I mean I have had this for years with no majors signs of any pain, discomfort, etc, except for I know for above average ibs problems, small intestine feelings right before I go to the bathroom, and gas and weird noises.

So yes please help all that you can. thank you.

...

To be honest it makes a lot of sense to me. Your tests aren't conclusive of celiac but you have sufficient data from the symptoms, family history and tests for the doctor to suspect it. The only other data that could help now short of a biopsy would be long term affects of a gluten free diet so that's what the Dr has recommended. Maybe it would've been nicer to speak to him directly, but that doesn't happen that often in my experience. They're busy people ultimately.

You have 3 choices. Take the doctor's advice and see just what impact going strictly gluten-free has on your health. Ignore him and continue the testing process with other doctors or just forget all about it and live with the health issues until something changes. think option a is the no brainer. Continuing with the testing may just reveal you're one of the people that react atypically to the tests and the genetic test doesn't seem worth it to me as it doesn't settle anything. Testing is expensive, time consuming and stressful and there are no guarantees. Option 3 doesn't sound too clever either given the potential consequences of untreated celiac. Six months eating whole foods, keeping a food diary and avoiding ALL gluten may give you more and better first hand data on your condition than any blood test or scan.

Because, much as is it's a pain in the arse, going gluten-free isn't the hardest thing in the world and if you're better on the diet you then have all the info you really need diagnosis notwithstanding. After my gluten challenge I knew that irrespective of the biopsy findings I'd be gluten free for life and that's how I've stayed despite testing negative. I'm either latent celiac, or non celiac gluten intolerant or hidden celiac or whatever, it doesn't really matter, I KNOW that stuff does not agree with me in any way whatsoever and once you know that sticking to the diet is a lot easier than you currently think it will be.

Best of luck whatever you choose and do pay attention to the folks here, there's some great knowledge amassed amongst them


...

Thank you very much for your help. You are making a lot of really great points to where I have been thinking along those lines trying to get my thoughts out in these forums. I agree with everything but I have 1 thing I would like to add that has been brought up on this thread below please see below.

See I could get a biopsy now and know for sure. Then I can act accordingly with all the facts. If I go gluten free right now, it might be harder to get tested later officially. This way I can get it out of the way and handle my business.

However I really agree with you. and that is what I was leaning towards in the thread. I think it would be better to just go gluten free and become much healthier for my body. I just have a gut feeling no pun intended that I know in my heart that if I get off gluten or reduce it by 99% that I am going to feel amazing, not have ibs problems, small intestine problems right before using the bathroom, and all over the place bowl movements.

So that is why I like your idea is to just handle it regardless.

My only main question would be even if I get a biopsy, test negative on all my blood tests for celiac, but if it runs in my family, my father, I probably have a good chance of getting it, so why risk myself of pulling that trigger button and going over the edge of having celiac disease.

I could get the genetic test done if my biopsy comes back negative, and if my genetic test comes back that I don't have a change, then I guess away I go, I can eat anything I want and just deal with the IBS, or fix my diet without worry.

However, in either case I am leaning towards cleaning up my diet radically, probably gluten free, working out a lot, and just getting overall healthier.

Please see below and let me know what you think. Thank you.

http://forums.phoenixrising.me/inde...-igm-levels-is-this-precursor-to.33232/page-2

I really, really appreciate your help. Thank you.

I think you make a very good point. I believe what you are saying is that:

1. I should probably call my Doctor back and get refereed to the GI Doctor in the same office
2. Talke to the GI Doctor about my IgA at 680 and my Peptide IgA at 20
3. Ask him to do a Celiac Biopsy while there is loads of Gluten in my system before I get off
4. Find out for 100% sure if I have celiac or not, and proceed from there.

Do this sound about right?

My only question would be at that point which to I believe the GI wouldn't even know the answer is. That if my Celiac Blood Panels are borderline, and my Biopsy comes back NEGATIVE, and since my father probably 99% sure has Celiac, wouldn't I still want to go gluten free to avoid of possibly getting celiac in the future because it runs in my family?

I guess the other thing I could do after I get the biopsy is get the Genetic Test Done and see if their is even a possibility of me getting it if my biopsy comes up NEGATIVE, and if it does I should probably eliminate gluten.

Am I missing anything, or does this look like the path I should take?

Here are some really, really good links that have been given to me if you don't already have them, but I will take more. You are right about a cure, might be close.

http://www.cureceliacdisease.org/

http://glutendoctors.blogspot.com/

http://glutendoctors.blogspot.com/2009/01/interpreting-lab-work-gluten-sensitive.html

http://www.ibsdiets.org/fodmap-diet/what-are-fodmaps/

https://enterolab.com/StaticPages/TestInfo.aspx#gene

https://labtestsonline.org/understanding/analytes/immunoglobulins/tab/test/

...

Ok here:

5 hours ago, casuallythere said:
If I go gluten free right now, it might be harder to get tested later officially. This way I can get it out of the way and handle my business.

You have it right - the big mistake lots of us make is going gluten-free BEFORE the testing process. This makes it super difficult to get accurate results, leads to false negatives etc. So many cut out gluten, feel fantastic, go to doctors and then have to go on it again - which feels 10 times worse than it did originally. Gluten challenges can be unpleasant, mine certainly was. The gold standard for diagnosing celiac is the endoscopic biopsy, so if you pushed for that now, perhaps you'd get the clarity of a diagnosis. It's not a minor procedure however and without the definitive blood work the dr may not ok it, but instead wants to see what affect the gluten-free diet has..

However here:

5 hours ago, casuallythere said:
that if I get off gluten or reduce it by 99% that I am going to feel amazing

You have misunderstood something about the nature of celiac or gluten sensitivity. Unless you have the fodmap sensitivity mentioned above if you have celiac you can't have even 1% of the gluten you had before. This is because it triggers your auto immune system, which is super sensitive to threats. Indeed, one of the side effects of going gluten free will be you will become even more sensitive to it. Even a crumb is enough to cause a reaction and the reaction to the crumb could be as bad as the reaction to a Big mac. If you follow the diet you have to commit completely, no treats, no exceptions.

This:

5 hours ago, casuallythere said:
1. I should probably call my Doctor back and get refereed to the GI Doctor in the same office
2. Talke to the GI Doctor about my IgA at 680 and my Peptide IgA at 20
3. Ask him to do a Celiac Biopsy while there is loads of Gluten in my system before I get off
4. Find out for 100% sure if I have celiac or not, and proceed from there.

Sounds like a plan. You could take a look at this thread:

https://www.celiac.com/gluten-free/...post-for-the-diagnosis-board-input-requested/

and specifically the links to the various manifestations of celiac to make there's no other symptoms you've experienced that you'd not hitherto connected. Write a very concise (bullet points no waffle) summary so that when you speak to the doctor you have everything to hand and see if they'll authorise the biopsy based on symptoms and the high reading.

As for this:

5 hours ago, casuallythere said:
My only main question would be even if I get a biopsy, test negative on all my blood tests for celiac, but if it runs in my family, my father, I probably have a good chance of getting it, so why risk myself of pulling that trigger button and going over the edge of having celiac disease.

Without a definitive diagnosis who is to say? Maybe you dont have it and will never develop it. Maybe you do and already have. It all depends on where you're at on the testing process. If the doctor says they don't think you should have the biopsy you're at an end there and have nothing to lose from trying the diet, but thats a call only you and your doctors can make.

Again, very best of luck. Many here have been through the same uncertainty and worries that you're experiencing. Be optimistic. If it's celiac or gluten sensitivity you will feel awesome when you do finally go gluten free. Something to look forward to, however much you love beer or cheesecake


...

Posted 45 minutes ago · Report post

2 hours ago, Jmg said:
Ok here:

You have it right - the big mistake lots of us make is going gluten-free BEFORE the testing process. This makes it super difficult to get accurate results, leads to false negatives etc. So many cut out gluten, feel fantastic, go to doctors and then have to go on it again - which feels 10 times worse than it did originally. Gluten challenges can be unpleasant, mine certainly was. The gold standard for diagnosing celiac is the endoscopic biopsy, so if you pushed for that now, perhaps you'd get the clarity of a diagnosis. It's not a minor procedure however and without the definitive blood work the dr may not ok it, but instead wants to see what affect the gluten-free diet has..

I will have to think about this. I definitely do not want my body to get used to absolutely no Gluten and then when I re-introduce it, my body goes haywire. Plus I do not want to cause any other problems with shocks to my system.

Do you think I will help my system by going 95% gluten free until I get all this worked out? At least my labs will stabilize?

That is one other question I have. I know my Doctor is not going to know, the GI one I mean, that when I ask him about my IgA 680 and Peptidge IgA 20, he will probably say that it is an outliner. Do you know where online, that I could submit my results and someone can tell me what they mean? I have no other symptoms. I do believe it is a Gluten Sensitivity for sure that is what my body is reacting too.

50 minutes ago, Jmg said:
However here:

You have misunderstood something about the nature of celiac or gluten sensitivity. Unless you have the fodmap sensitivity mentioned above if you have celiac you can't have even 1% of the gluten you had before. This is because it triggers your auto immune system, which is super sensitive to threats. Indeed, one of the side effects of going gluten free will be you will become even more sensitive to it. Even a crumb is enough to cause a reaction and the reaction to the crumb could be as bad as the reaction to a Big mac. If you follow the diet you have to commit completely, no treats, no exceptions.

See this is just what I don't understand and I know that my Doctor will not be able to explain it either. This is why I will do the Genetic test, and probably the biopsy because I need to know for sure.

I mean if I can eat it now, and I do not have the pain like my father does, in fact i have no pain, and I consume HUGE amounts of gluten right now, except that my tests are coming in the above high normal side. So if I reduce my Gluten to 95% won't I be extremely better?

I think I am reading that some people could have no symptoms and be destroying their lower intestine so that might answer that for me. So I guess I need to find out for sure so that I am not destroying my lower intestine without myself knowing about it.

50 minutes ago, Jmg said:
This:

Sounds like a plan. You could take a look at this thread:

https://www.celiac.com/gluten-free/...post-for-the-diagnosis-board-input-requested/

and specifically the links to the various manifestations of celiac to make there's no other symptoms you've experienced that you'd not hitherto connected. Write a very concise (bullet points no waffle) summary so that when you speak to the doctor you have everything to hand and see if they'll authorise the biopsy based on symptoms and the high reading.

Thank you very much for your prior work on that thread. I will definitely take a look at it.

That is a very good idea, I will build up bullet points and get it to my Doctor straight!

Here is my plan, not sure if I put it earlier.

1. Go to my GI Doctor in the same building, he knows all my history and has seen me several times.

2. Tell him I want a Genetic Test to see if I could get Celiac, because if I can't this is all moot.

3. If the Genetic Test shows that I could in fact get it, then I will request a Biopsy to find out once and for all

4. If Biopsy comes back Negative and Genetic test comes out Negative, then I might just have an intolerance of gluten, and will move on with all of this. However, this will not happen because if my genetic test comes back negative i'm good.

5. If Biopsy comes back positive, then we know and I can go Gluten Free

Note:

I started gluten free yesterday, and I already feel like my body likes it, plus I am kind of excited about it in some weird way. I mean I would like to be healthier and this would be an avenue to where I can do just that. Cutting out regular bread and sandwiches however, will be the toughest part to me.

50 minutes ago, Jmg said:
As for this:

Without a definitive diagnosis who is to say? Maybe you dont have it and will never develop it. Maybe you do and already have. It all depends on where you're at on the testing process. If the doctor says they don't think you should have the biopsy you're at an end there and have nothing to lose from trying the diet, but thats a call only you and your doctors can make.

I think my plan above will address this exactly.

Yes I will do the Genetic test no matter what. This will get me closer, but yes you are right if my GI Doctor does not think I should do the Biopsy, then I am stuck because I will probably have to go gluten free because I do not want to risk destroying my lower intestine while not even knowing about.

This will probably be the hardest part of my visit. Any more recommendations no how I could address this?

Also what do you mean about where I am with Celiac, this is where to me it is so odd. Do I have, do I don't have it, I guess there is a line that you can cross to where you have it or not, hopefully I have not yet crossed that line yet, based on my results I do not think I have but who knows. This is just so odd.

on the Chicago site, I think it says that it is at some point your body hits a trigger point and boom you have it when you didn't before. To be honest I really should have been paying more attention to this and not getting my body to Peptide IgA 20 by eating loads and loads of gluten. I really hope I didn't hurt myself for no good reason.

50 minutes ago, Jmg said:
Again, very best of luck. Many here have been through the same uncertainty and worries that you're experiencing. Be optimistic. If it's celiac or gluten sensitivity you will feel awesome when you do finally go gluten free. Something to look forward to, however much you love beer or cheesecake


Yes, thank you so much for your continued help.

I hope this thread and your thread helps others, you are right it is a tough deal because not a lot of people really know about it and it seems like it is still a new thing. I mean the genetic altering of bread over and over again is causing problems with people.

I wonder if we grew fresh wheat from out back yard could we eat it without issue?

I wonder if the scientist that make these alternations know X percentage of people will have side effects but they understand considering how many people they can feed verse they will hurt. I am sure they know all these factors.

Thats the thing, I have been deeply thinking about it, I could give up many things no problem, not really worried about it. The main thing I am struggling with is going to how to just eat a normal sandwich on the go while driving around in the car while working.

Thank you for all of your help and please advice further on above comments.

...

Thank you very much for all of your help. I really appreciate it!
 
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More:

You asked some questions that there are no definite answers for right now. So you are going to have to make your decisions based on incomplete knowledge.

You asked if it is possible to prevent the development of celiac disease by avoiding most gluten now. There is no clear cut answer on that yet. In the past doctors believed that celiac disease could develop because of some kind of stress on the body. Such as illness, pregnancy, emotional stress, etc. That thinking is not disproven, however there is some new thinking recently that is different.

Dr. Alessio Fassano made the discovery of zonulin, a chemical that regulates the opening of gateways in the gut. He found that people with celiac disease tend to have much more of this zonulin chemical in their guts than other people. His current theory is that there may be a link between zonulin, genes, bad bacteria, and the development of celiac disease. So to develop celiac disease we would need all of those elements present, zonulin, bad bacteria, genes, and gluten. Once the immune system learns to attack an antigen though, it never forgets, so once you have celiac, you always have it.

None of this is proven yet, it is just theory and early on in the theory stage. But even without a complete knowledge of the mechanism by which we develop celiac disease, you can make changes that might help. You could go completely gluten-free now, and avoid all gluten for the rest of your life. That would keep your immune system from identifying gluten as an antigen. If it hasn't already.

You can also switch to a gut friendly diet, like celiacs should eat anyway. Eating whole foods and avoiding excessive carbs and sugars plus taking gluten-free probiotics may help your gut biome stay healthy. If you have the genes for celiac these steps might stop celiac from developing. But it's all theory only at this point and you have to decide if that's worth doing. If you have excessive zonulin in your gut these changes may help prevent celiac, but they won't change your genes or the amount of zonulin you make. So it would need to be a lifetime change.

Maybe in a few years more research will prove what the best way to prevent celiac disease from developing is. But right now we don't have all the answers. Remember, this is all new stuff with little to back it up at the moment. YMMV.

...

Let me know what you think. Thank you.
 
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Thank you very much for this information. I really appreciate it. Let me see if I understand you correctly.

My Options:

1. Get a Genetic Test

2. If Genetic Test is Positive Get Biopsy

3. Biopsy Comes back Positive = Go on gluten free diet

4. Biopsy Comes back Negative but Genetic Test comes back Positive = Go on gluten free diet

5. From what I am reading and understanding the only way I could not go on a gluten free diet is if my genetic test comes back Negative for Celiac Disease which is highly unlikely.

So I believe what you are saying as the medical field as a whole does not have enough information to know like say AIDS for example to know exactly how the disease spreads or someone is infected. My only option is to go gluten free unless for some small chance it is impossible for me to get it by knowing and getting a Genetic Test.

The reason for all of this is simply we do not have enough information.

For example: If my genetic test comes back that I could get celiac disease but my biopsy shows I do not have it right now, we don't know when or how exactly it is going to occur in my life. Therefore, just go gluten free anyway and play it safe.

This is not all that bad, because it looks to me like a great healthy diet to where it will help me look good and feel good. Plus if it eliminates my lower intestine problems and my general well being its a done deal.

Looks to me the only way I can keep Gluten in my life is that if my Genetic Test says that it is impossible for me to get it. Even then I still might go gluten free or 99% reduction because if I am gluten sensitive, I want to eliminate my symptoms.

Please let me know what you think. Thank you.
 
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Hi CT,

The gene test can tell you if you have the genes associated with celiac disease. It can't tell you that you will get celiac disease. About 30% of people have a gene for celiac, but only about 1% actually get celiac disease.

So you can go gluten-free, but you'll never know if you would have gotten celiac disease or not. Medical science just isn't at that point yet.

Since you already have some symptoms though, it might be prudent to avoid the possibility of them getting worse. So going gluten-free could be worthwhile. There is no test for NCGS (non-celiac gluten sensitivity) yet. I think someone already suggested the possibility of a FODMAP intolerance. That is because some people who claimed to have NCGS were actually found to have FODMAP intolerance. I am not sure of there is a FODMAP test, other than elimination, but maybe there is.

...

20 minutes ago, GFinDC said:
Hi CT,

The gene test can tell you if you have the genes associated with celiac disease. It can't tell you that you will get celiac disease. About 30% of people have a gene for celiac, but only about 1% actually get celiac disease.

So you can go gluten-free, but you'll never know if you would have gotten celiac disease or not. Medical science just isn't at that point yet.

Since you already have some symptoms though, it might be prudent to avoid the possibility of them getting worse. So going gluten-free could be worthwhile. There is no test for NCGS (non-celiac gluten sensitivity) yet. I think someone already suggested the possibility of a FODMAP intolerance. That is because some people who claimed to have NCGS were actually found to have FODMAP intolerance. I am not sure of there is a FODMAP test, other than elimination, but maybe there is.

I am not exactly sure what you are saying.

Are you saying that if I get the Genetic Test to see if I could get Celiac or not ever in the future. That is not a reliable test?

I mean what if the Genetic Test says there is no way I could get Celiac Disease? Is that possible?

Also, if the Genetic Test comes back and says that I could possibly get Celiac Disease. Are you saying that I have a 1% chance of a 30% chance that I could actually get Celiac Disease?

See that is what I want to figure out exactly, do I have something like FODMAP, or do I have a NCGS.

If I get the Genetic Test, and it says I do have a possibility of getting Celiac, and then I get a Biopsy coming out Positive, wouldn't that be a 100% sure case that I have it? Then I would have to go on a gluten free diet.

Sounds to me this is a 100% correct plan of action. With no doubt. Or am I missing something? Are you saying there is no genetic test that is correct for Celiac Disease?

Because after the Genetic Test, I will either go on a gluten free diet, get a biopsy, or stay just the way I am.

Right?
 
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Posted 2 hours ago · Report post

2 hours ago, casuallythere said:
I am not exactly sure what you are saying.

Are you saying that if I get the Genetic Test to see if I could get Celiac or not ever in the future. That is not a reliable test?

I mean what if the Genetic Test says there is no way I could get Celiac Disease? Is that possible?

Also, if the Genetic Test comes back and says that I could possibly get Celiac Disease. Are you saying that I have a 1% chance of a 30% chance that I could actually get Celiac Disease?

See that is what I want to figure out exactly, do I have something like FODMAP, or do I have a NCGS.

If I get the Genetic Test, and it says I do have a possibility of getting Celiac, and then I get a Biopsy coming out Positive, wouldn't that be a 100% sure case that I have it? Then I would have to go on a gluten free diet.

Sounds to me this is a 100% correct plan of action. With no doubt. Or am I missing something? Are you saying there is no genetic test that is correct for Celiac Disease?

Because after the Genetic Test, I will either go on a gluten free diet, get a biopsy, or stay just the way I am.

Right?



If you don't have the genes, it is very unlikely for you to get celiac disease.

If you have the genes, you have a 1% chance out of 100 or 110 to get celiac disease.

If you have positive anti-gliaden antibodies, and a positive celiac biopsy, then you have celiac disease.

If you have the genes and you have celiac disease, then you are like most of the members of this forum.

If you want to go gluten-free without any of those things, feel free. There is no gold star for eating your quota of gluten each year.

Probably most people would be better off to eat a whole foods diet and restrict processed foods to a much lower level than the SAD. Even if they don't have celiac disease.

...

Posted just now · Hidden

2 hours ago, GFinDC said:
If you don't have the genes, it is very unlikely for you to get celiac disease.

If you have the genes, you have a 1% chance out of 100 or 110 to get celiac disease.

If you have positive anti-gliaden antibodies, and a positive celiac biopsy, then you have celiac disease.

If you have the genes and you have celiac disease, then you are like most of the members of this forum.

If you want to go gluten-free without any of those things, feel free. There is no gold star for eating your quota of gluten each year.

Probably most people would be better off to eat a whole foods diet and restrict processed foods to a much lower level than the SAD. Even if they don't have celiac disease.

Thank you.

Well I want to know for 100% what I have in either case.

So this is what I am going to do.

1. Get genetic test

2. Get a biopsy if genes test says I could get it, 1 out 110 is very good odds for me to get it, plus my peptide IgA is 20 which is the max, any more and I will have tested positive, or weak positive.

3. Go gluten free obviously if I am positive on biospy

4. If for some reason my IgA stabalizes, its no in my genes, and my biopsy comes back negative, I will probably still eliminate 95% of gluten if not 100% gluten, because I have been off (3) now already of ALL gluten, and I already feel better.

5. I will be contacting my GI Doctor tomorrow to get all this figured out once and for all.

Thank you very much for your help!
 
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Hi @Astrongtower
yeah, that is pretty much what I was saying, although what I meant by positive tests was the gluten antibody tests - which I think you said were borderline high? sorry don't have the ability to reread whole thread.
Either way symptoms + 1st degree family history should be enough to get you a referral to a gastro.

Here are what I believe are used as the most current diagnostic guidelines in the States:
https://gi.org/guideline/diagnosis-and-management-of-celiac-disease/
The Chicago celiac disease center is a really good source of info, faqs etc, and seems to be well respected:
http://www.cureceliacdisease.org/

guidelines / testing are pretty similar worldwide as far as I know, but If you are in another country you might want to bring in local info from your country's celiac association or national guidelines - some doctors might only want the official ones from your own country

I obviously can't give you medical advice but if it were me I ask the gastroenterologist about getting the genetic test - it doesn't diagnose Celiac but if it is negative you never have to worry about developing it, and you could forgo the biopsy.
In terms of the stool test you mentioned earlier that is considered pseudoscience (no doctor will accept the result of that as diagnostic)

If the biopsy is negative you could obviously still try going gluten-free, but you would at least have all of the info from biopsy and genetic to know if it is celiac or gluten intolerance, and whether you need to monitor it in future.

hope that helps :)
Good Update! Need Your Advice!



Okay everyone, I just got back my results for my both my Genetic Celiac and Immunofixation, Serum TESTS.



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



Both My Doctor’s Recommendations:



Doctor 01 – Internal Medicine



Says that my Peptide IgA = 20 means that I have a gluten sensitivity and that I should go on a gluten free diet. Also said my IgA = 680 is of no significance because it has stabilized and actually lowered from 710 to 680.



Doctor 02 – GI Doctor



Says my Genetic Test doesn’t mean anything and that the only way to find out for sure is to stay on gluten and perform a Biopsy. I almost feel like he is trying to sell me a Biopsy but I could be wrong.



Questions:



1-Not sure what the results mean, can I get Celiac or Not? Is it in my genes, I guess it is, I’m one of those 39%. Maybe if I was one of the 71%, I guess I would have nothing to worry about.

2-Do I go off gluten or do I stay on it?

3-My Father never got the Biopsy done because he did not want to risk a procedure, he was very confident that when he got off gluten that he felt better overnight. Should I just go down the same path as him? I mean if I do have the small possibility to get it, why even risk it. Just go gluten free, right?



Help!



Please help me to interpret these results and give me guidance on what to do. Thank you.
 
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Hi @Astrongtower
yeah, that is pretty much what I was saying, although what I meant by positive tests was the gluten antibody tests - which I think you said were borderline high? sorry don't have the ability to reread whole thread.
Either way symptoms + 1st degree family history should be enough to get you a referral to a gastro.

Here are what I believe are used as the most current diagnostic guidelines in the States:
https://gi.org/guideline/diagnosis-and-management-of-celiac-disease/
The Chicago celiac disease center is a really good source of info, faqs etc, and seems to be well respected:
http://www.cureceliacdisease.org/

guidelines / testing are pretty similar worldwide as far as I know, but If you are in another country you might want to bring in local info from your country's celiac association or national guidelines - some doctors might only want the official ones from your own country

I obviously can't give you medical advice but if it were me I ask the gastroenterologist about getting the genetic test - it doesn't diagnose Celiac but if it is negative you never have to worry about developing it, and you could forgo the biopsy.
In terms of the stool test you mentioned earlier that is considered pseudoscience (no doctor will accept the result of that as diagnostic)

If the biopsy is negative you could obviously still try going gluten-free, but you would at least have all of the info from biopsy and genetic to know if it is celiac or gluten intolerance, and whether you need to monitor it in future.

hope that helps :)
P.S. I forgot to mention that I have been gluten free 2-3 weeks now just trying it out and I feel absolutely amazing. I mean it’s like night and day. I use to feel sluggish, sometimes rarely I would get a slight pain right before going to the bathroom in my lower intestine, I would have diary sometimes, IBS problems, whatever, nothing seriously hardcore, never serious main or major pain, just a lot of discomfort, I mean sometime I would be fine and sometimes not. As of right now I have had zero issues with my gut, bloating, gas, pain, discomfort, I mean it’s like I’m a new person. So I guess I diagnosed myself. I mean I could do a Biopsy and stay on gluten like one of my Doctors say, but what’s the point? I have it possibly in my genes and I feel amazing. Just probably need to go Gluten Free!



Let me know what you think!
 
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Labtestsonline.org is a wealth of information. Here is what they write about elevated IgA levels:

http://labtestsonline.org/understanding/analytes/immunoglobulins/tab/test/

As you can see, there are many reasons (including infection and autoimmune diseases) that IgA can be elevated and that result is generally looked at in relation to the IgA and IgM levels.

I agree with @halcyon that they have ruled out the monoclonal gammopathy which is good news in terms of cancers.

I don't see your full celiac testing though. The most sensitive celiac testing is the tTG-IgA

Again, from labtestsonline.org:

http://labtestsonline.org/understanding/analytes/celiac-disease/tab/test/

So you can see that the reason they ran the IgA in the first place was to make sure that you did not get a false negative due to lack of IgA.

There's a difference between a true IgE mediated wheat allergy and a wheat sensitivity. Wheat sensitivity is increasingly common and most experts suggest that those with autoimmune disorders (or suspected autoimmune disorders) or other inflammatory conditions should avoid gluten containing products.

So my suggestion would be to get the full celiac panel done...if you like...but then just consider doing a trial of gluten free. I've found it to be very helpful for my digestion overall (and I tested negative for traditional celiac disease - though traditional testing only looks at a very few of the possible problems and false negatives are extremely common).

For further reading see:

Wheat Belly, written by cardiologist Dr William Davis

http://www.wheatbellyblog.com

Podcast:

Gluten Sensitivity and Celiac Disease with Dr. Thomas O'Bryan

http://www.blogtalkradio.com/underg...n-sensitivity-and-celiac-disease-with-dr-thom
Last main point! Question/Theory?



So here is why I started this whole Journey. I wanted to know if I could get Celiac or have Celiac. The reason being is because my wife is pregnant and we are going to be have 2-3 kids. I wanted to know if I am going to have to be that Dad that is like I can’t have that piece of pizza because it has gluten in it. Or have they ask why Daddy are you not eating a piece of pizza. I know that this is a lame example but I mean just wanted to be sure that I had to go this direction.



That’s not my main question.



My Theory is that Gluten intolerance is like smoking, or drinking. Yes both can ultimately kill you and make sure very sick but if you just smoke a little and drink a little you probably are not going to die. Yes we can debate this a million ways to Sunday but I know if for example you are just a social drinker you should be fine.



This is like Gluten. I think I can go gluten free for a year and let my inner lining heal 100%. Then re-introduce gluten into my system on extremely small amounts like breaded fish, or the occasional hamburger, but never binge on it with rolls, pizza, subway sandwiches, and tons and tons of pasta like I have been doing just recently.



The only strange thing here is that I have read peoples post online to where Celiac is extremely embarrassing and hard. To where some people can’t have a single trace of gluten in their diet ever. They have to even ask if they use the same kitchen tools for their non-gluten cooking because they are worried that they might have a trace of gluten on it. Maybe some people react differently or have the pain like my dad and have to avoid, I don’t know. I do know that even my dad has a little gluten every now and then and he is fine.



So my main question is. I know that gluten can damage your system without you even knowing it, or sign of any systems. But how bad is it? I have asked my Doctor about this and he said that it is impossible to be completely pure. That you just go on a gluten diet and eat it at least as possible. THAT CAME FROM MY DOCTOR.



So is my theory right? Can you go gluten free and just have a little once in a blue moon, or will you die? Could you develop cancer secretly in your gut because you had a piece of pizza or a subway sandwich a few times a year? Without even knowing it?



Or can you heal for like a year, get your system strong again, and just cheat or have a piece of gluten once in a blue moon, because my dad is doing that right now. Or is he going to die?



I am not taking about the symptoms here. I mean at least we know what it is. I mean if it is gluten, and you have a strong system, if you eat it will you just have to deal with the aggravation of the symptoms if you eat it? Seems to me this is the correct answer.



I mean I believe some people are going to say you can’t have a spec of gluten but I think they are wrong. I think you can have a spec every now and then just like you can have a drink of alcohol every now and then. You might have a hangover later, or might have IBS, but you will not die.



I think yes, if you leave your gluten unchecked and eat bread all the time and just live in discomfort with possible pain and ignore everything, yes you could develop something much worse. But I would never do this. I am a very detailed person and will go gluten free base on my results. Simply having the possibility of developing Celiac is enough for me, but cheating every now and then I do not think is out of the question.



Let me know what all of you think. I really appreciate all of your help!