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Elevated Iga From Celiac Disease Test. I Do Not Have Celiac Disease…

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7 minutes ago, kareng said:

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.

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.

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4 hours ago, casuallythere said:

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.

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 :)

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16 minutes ago, Jmg said:

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/index.php?threads/celiac-test-done-high-iga-and-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/

 

 

 

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Ok here:

2 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:

2 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:

2 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/topic/115138-suggestion-faq-intro-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:

2 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 :)

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50 minutes 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/topic/115138-suggestion-faq-intro-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.

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2 hours ago, casuallythere said:

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.

 

Celiac disease is not caused by the altering of wheat. That's an old internet falsehood that keeps getting repeated over & over & over again. It wouldn't matter if we were eating wheat that was grown in Egypt 10,000 years ago, celiacs would STILL be negatively affected by it. What it actually is, is the PROTEIN in the wheat -- that's where the problem lies; it's not about different strains or varieties or hybrids of wheat, it's the actual protein which is contained within the wheat kernel.

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Hi CT,

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.

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5 hours ago, GFinDC said:

Hi CT,

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.

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 (like Karen) 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. 

Edited by GFinDC

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15 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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5 minutes 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.

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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 CT,

Do you understand that if you are not eating gluten the testing won't work?  The whole point of us not eating gluten is so that our bodies can heal.  So going off gluten is going to mess up any celiac testing.  So if you want your doctor to test you for celiac you have to stay on gluten until all the testing is done.

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7 hours ago, GFinDC said:

Hi CT,

Do you understand that if you are not eating gluten the testing won't work?  The whole point of us not eating gluten is so that our bodies can heal.  So going off gluten is going to mess up any celiac testing.  So if you want your doctor to test you for celiac you have to stay on gluten until all the testing is done.

Yes.

I thought I would at least take a small break. Just seemed like it was getting out of hand. However, I could keep eating like a sandwich here and there to keep it in my system until I can get all this figured out with my GI Doctor. 

I will be calling him today to set up an appointment and get all of this figured out.

I feel I have so much more information now to make the best possible decision to get all this ironed out.

Thank you.

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On 1/8/2017 at 9:22 PM, GFinDC said:

Hi CT,

Do you understand that if you are not eating gluten the testing won't work?  The whole point of us not eating gluten is so that our bodies can heal.  So going off gluten is going to mess up any celiac testing.  So if you want your doctor to test you for celiac you have to stay on gluten until all the testing is done.

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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On 1/8/2017 at 9:22 PM, GFinDC said:

Hi CT,

Do you understand that if you are not eating gluten the testing won't work?  The whole point of us not eating gluten is so that our bodies can heal.  So going off gluten is going to mess up any celiac testing.  So if you want your doctor to test you for celiac you have to stay on gluten until all the testing is done.

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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Hi CT,

The genes are a possibility of getting celiac disease, but most people with the genes don't get celiac disease.  It's not an automatic thing to get celiac if you have the genes.

The usual diagnostic process is a blood test for antibodies first, and then and endoscopy with biopsy samples for microscopic review.  So your doc is following the usual testing process.

You have to decide if you want to go through with testing.  It will be harder to do testing later than it is now.  later you would need to go on a gluten eating challenge of 12 weeks for the blood tests and 2 weeks for the endoscopy.  That ain't easy if you have celiac and have been gluten-free for a while.

Since it's lifetime diagnosis some people want the full test procedure to prove it to themselves that gluten makes them sick.  Some people already know that and don't care for the rigamarole of full testing.  It's not like the testing is perfect, you may still get a negative results even if you have celiac disease.

I didn't get the endoscopy because I had been gluten-free for 4 months before I got in too see the GI for testing.  And I was working and couldn't see getting terribly sick for 12 weeks to prove what I already knew, that gluten made me sick, sick, sick.  I had a stressful job and it wasn't easy to do in the best of times.  Otherwise it was all fun! :)

So, think hard about if you need the diagnosis to stay gluten-free.  Some do, some don't,  Very helpful huh? :)

 

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10 hours ago, GFinDC said:

Hi CT,

The genes are a possibility of getting celiac disease, but most people with the genes don't get celiac disease.  It's not an automatic thing to get celiac if you have the genes.

The usual diagnostic process is a blood test for antibodies first, and then and endoscopy with biopsy samples for microscopic review.  So your doc is following the usual testing process.

You have to decide if you want to go through with testing.  It will be harder to do testing later than it is now.  later you would need to go on a gluten eating challenge of 12 weeks for the blood tests and 2 weeks for the endoscopy.  That ain't easy if you have celiac and have been gluten-free for a while.

Since it's lifetime diagnosis some people want the full test procedure to prove it to themselves that gluten makes them sick.  Some people already know that and don't care for the rigamarole of full testing.  It's not like the testing is perfect, you may still get a negative results even if you have celiac disease.

I didn't get the endoscopy because I had been gluten-free for 4 months before I got in too see the GI for testing.  And I was working and couldn't see getting terribly sick for 12 weeks to prove what I already knew, that gluten made me sick, sick, sick.  I had a stressful job and it wasn't easy to do in the best of times.  Otherwise it was all fun! :)

So, think hard about if you need the diagnosis to stay gluten-free.  Some do, some don't,  Very helpful huh? :)

 

 

On 4/5/2014 at 0:02 AM, RMJ said:

I don't know abut the IgA level, but I can say that you don't need to worry about the Hematology department phone being answered as a Cancer center. I see a hematologist because I have a bleeding disorder (totally unrelated to celiac). Hematology and Oncology are grouped together as specialties. It seems that most hematologists are also oncologists, but not all oncologists are also hematologists. Hematologists deal with bleeding and clotting problems, and also blood cancers like leukemia. I always feel a little guilty in the waiting room for my hematologist because my particular bleeding disorder, now that it is diagnosed and controlled, isn't anywhere near as serious as any cancer that the other patients may have. Hope this helps.

 

On 4/5/2014 at 1:16 AM, nvsmom said:

I was in the cancer unit for a blood disorder too.... Totally freaked out some friends who came to visit me. Lol

 

I don't know a lot about elevated IgA except that it can be benign, or a sign of problems. http://www.webmd.com/a-to-z-guides/immunoglobulins?page=2. Hopefully it is an innocent thing for you. It can be a sign of SLE, RA, liver issues or cancer. Just don't lose sight of the fact that it could be just the way you are.

 

I would consult dr google and bring a lst of questions to the doctor, and then monitor it if you are not satisfied.

 

Best wishes.

 

On 4/5/2014 at 3:42 AM, LauraTX said:

If you want to keep reaching out for answers, you may consider a doctor with a specialty in Allergy, Asthma, and Immunology.  If you can, get someone who is a "Fellow of The American Academy of Allergy, Asthma and Immunology (AAAAI)  who has FAAAAI after their name.  The only reason I know this is I have an immunodeficiency and see an immunologist who is a FAAAAI and also has a pediatric fellowship attached.  Basically they handle anything wrong with the immune system whether it is low levels, high levels, allergies, asthma, or anything else of the sort.  If it truly is nothing, they will be the person to know.

 

I personally have low levels of IGA and IGG, which means I am missing a chunk of my immune system.  I don't know what it means to have too much, though.  But if the hematologist discharges you I would definitely seek out a consultation with an immunologist.

 

On 4/5/2014 at 4:38 PM, LauraTX said:

Oh, I will do that!  I should see him at my next IVIG infusion on the 17th.  Sometimes I don't get to see him but I think I didn't last time so I should see him this time definitely.  I am kind of like you, I can't just let things lie if something may possibly be wrong.  That led to me finally getting everything properly diagnosed so I could treat the problem, not just the sickly symptoms I had.  Even if it is likely nothing I would do the same!  And of course seeing an allergy specialist will help you get your allergy stuff possibly under better control so there could be a plus.

 

On 4/8/2014 at 3:42 PM, SkyBlue4 said:

Thank goodness! I thought it was just me!   :D  

 

On 4/8/2014 at 10:47 PM, kareng said:

But that isn't possible. You have only made this thread and not commented on any other people's threads.

 

On 4/9/2014 at 1:00 PM, gluten-free Lover said:

And start a new thread with your question.  This thread is done.  If you happen to forget and pose your question in this thread, I will start a new one for you and move it myself.  Threads need to be cohesive for future readers.

 

Thanks

 

Colleen

 

On 1/7/2017 at 0:45 AM, cyclinglady said:

 

You should listen to your doctor.  

The high IgA?  For celiac testing, it is just used as a control test.  Mine was really elevated and I do not have cancer.  I do have two autoimmune disorders.  So, I personally would not worry about that result.  

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

I am not a doctor, but my cholesterol totals and HDL have historically been low.  My old doctors used to congratulate me.  Now I know that it was a sign of celiac disease.  LOw cholesterol is just as bad as really high levels in terms of heart health based on recent research.   On the celiac panel, I only tested positive on the DGP IgA, yet I had moderate to severe intestinal damage.  I had no gut issues at all, but did have anemia my entire life but I also have a genetic anemia (I had two types of anemia).  Two months later after my diagnosis, I started fracturing bones doing NOTHING.

 Unchecked or untreated celiac disease can do some serious damage and some of it is irreversible.  

Finally, once a celiac, there is no cure.  Intentional glutenings are not acceptable. 

Only you can make the decision that is best for you.  

 

On 1/7/2017 at 6:39 AM, ironictruth said:

Total IGA can be elevated with autoimmune issues..so do not freak on the cancer thing. 

I can tell you I tested at a 20 and 21 on the DGP IGA twice over 18 months ago. The Celiac Disease folks at University of Chicago's website will tell you that a weak positive DGP IGA can be misleading. They also informed me of this via email, and told me a positive IGG would be more supportive of celiac.  celiac disease research Folks at Massachusetts General also informed me of the DGP not being particularly reliable.  That being said many people are diagnosed based on that blood work who end up having a positive biopsy for celiac. So it is a very useful test and more so than the older versions.  I've also done my own research and sometimes these tests can come back weakly positive in folks who are first-degree relatives of somebody with Celiac. Being a first degree relative can incr3ase your rusk of  developing the disease but it does not necessarily mean you'll get it.

 What I am saying is that with a weak positive test like that can be misleading and you really should consider doing a biopsy if you have not already done one.  I would not want you to end up in my position going gluten-free based on a primary care telling me to do so on a weak positive test and then going through tWo gluten challenges With a lot of health issues and not having a  clue if it's Celiac or something else.  you also do not want to have to go gluten free for the rest of your life if you do not need to.

 your anxiety will make this ten thousand times worse. Trust me on that one.  unfortunately you may have to go to a couple different doctors and Specialists to figure out what your symptoms are caused by.

 cycling lady is right, the best thing to do would be research celiac disease specialists in your area and go see one of them. 

 

On 1/7/2017 at 10:17 PM, squirmingitch said:

Celiac disease is not caused by the altering of wheat. That's an old internet falsehood that keeps getting repeated over & over & over again. It wouldn't matter if we were eating wheat that was grown in Egypt 10,000 years ago, celiacs would STILL be negatively affected by it. What it actually is, is the PROTEIN in the wheat -- that's where the problem lies; it's not about different strains or varieties or hybrids of wheat, it's the actual protein which is contained within the wheat kernel.

 

On 1/8/2017 at 3:33 PM, 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 (like Karen) 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. 

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!

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32 minutes ago, casuallythere said:

 

 

 

 

 

 

 

 

 

 

 

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!

 

I can't tell if this is "real" for you or just a game of "what-if".   Maybe you are one of these people that like to "argue" on the internet?  I don't think I would blame gluten for that.

Please note that gluten intolerance is different than Celiac disease.  It appears that it can be caused by different things and may or may not cause serious damage.  

Are you a medical researcher?  An MD, PHD?  You can have all the "theories" you like about Celiac, but there are actual medical doctors/researchers who, I hope, people  will listen to.  

Obviously, you are in denial about Celiac -if that is actually what you have.   You hear what parts you want to hear and ignore the parts you don't.  

 

You say you are worried about your kids wondering why Dad can't have pizza?  But you don't worry about the bad example it sets for them when you don't  treat your disease?  If one of your kids has Celiac, are you going to be so lack luster about treating it?  Possibly setting them up for a lifetime of medical issues?  If they have another disease, like diabetes, are you going to tell them to take insulin for a while and then they can stop if they feel better?

I haven't seen any info about what untreated Celiac disease does to male fertility, we know it affects a women's fertility.  

 

Good luck to you and your family.  

 

Edited by kareng

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1 minute ago, kareng said:

 

Please note that gluten intolerance is different than Celiac disease.  It appears that it can be caused by different things and may or may not cause serious damage.  

Are you a medical researcher?  An MD, PHD?  You can have all the "theories" you like about Celiac, but there are actual medical doctors/researchers who, I hope, people  will listen to.  

Obviously, you are in denial about Celiac -if that is actually what you have.  You hear what parts you want to hear and ignore the parts you don't.  

 

You say you are worried about your kids wondering why Dad can't have pizza?  But you don't worry about the bad example it sets for them when you don't  treat your disease?  If one of your kids has Celiac, are you going to be so lack luster about treating it?  Possibly setting them up for a lifetime of medical issues?  If they have another disease, like diabetes, are you going to tell them to take insulin for a while and then they can stop if they feel better?

I haven't seen any info about what untreated Celiac disease does to male fertility, we know it affects a women's fertility.  

 

Good luck to you and your family.  

 

I am still unsure what you are trying to say?

what is the difference?

"Please note that gluten intolerance is different than Celiac disease"

From what I am understanding, whether you have Celiac Disease or Gluten Intolerance, having a little gluten is not going to make a difference.

 

 

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1 minute ago, casuallythere said:

I am still unsure what you are trying to say?

what is the difference?

"Please note that gluten intolerance is different than Celiac disease"

From what I am understanding, whether you have Celiac Disease or Gluten Intolerance, having a little gluten is not going to make a difference.

 

 

Actually, depending on why you can't have gluten, it does make a difference.  For example. Fodmaps - you can ften have a small amount of gluten - maybe 1 piece of pizza even - with no ill effect.

 

I think you are just here to argue & have no real interest in Celiac disease or gluten intolerance.  But that is just my theory.

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Umm, for me personally, it was literally killing me. Celiac is a autoimmune disease, that same immune system that kills germs, well it goes after gluten in people with celiac disease and often mistakes the intestines, nervous system, brain, joints etc. Different people are affected differently by it, but in general its is like you body fighting a germ/disease. The smallest amount of gluten will trigger it, and the response will keep up for weeks and even months. Now the amount can trigger the severity of the reaction sure but any amount will cause it.

Think of it like this every time it happens your own immune system starts the attack run. and will hit then wean off over weeks. Again the response and areas it attacks vary from person to person, But this damage is accumulative, it can take years for the intestines to heal if you stay strictly off it, if it effects your nerves/brain it can take a whole lot longer to heal 5-10 years even before it is noticeable. It attacked my brain and nerve systems along with my intestines, been gluten-free for over 3 years now. Docs just did a follow up my intestines are finally starting to heal, some foods I can eat again that I had become intolerant to, but my brain damage is still present, my hands still lack feeling (tad bit better but still can take a min to notice I just grabbed a hot pan).

I ignored my symptoms for years and thought it was normal at first, it got progressively worse. Then when the brain and nerve issues hit the point of me going insane, with major brain fog, inability to do stuff I used to consider normal, everyday things stumping me. It was driving me mad, top it off with gut pains that would lay me out for a day or so, loosing feelings in my limbs, constipation for 5+ days then random purging.  It just kept getting worse and worse the last few years til I was running a bucket list thinking I was dying before we figured out it was gluten causing it. Would I risk going back on it again? NEVER that damage and  the progress I made is just not worth it. If I had gone gluten-free years earlier perhaps I would be doing computer programing still instead of being on disability and living a bloody bubble life.

Mine again is so bad now I will be laid out on the floor puking so that it contains blood, in gut wrenching pain for 6-8 hours unable to move. This happened last june when I decided to eat out at a place with a friend and only later learned of how they prepped the food. My heart rate monitor actually said my heart rate was in the 30-38 range for couple of hours. But that's due to how sensitive I have become. If your confirmed a celiac via diagnoses I suggest you get off it now, never touch the stuff so you do not have to put up with this bull S**t. Check my profile for other health issues that resulted from my issues and ignoring it, ask "Is that worth it"  

As for your kids and everything, Man they make gluten-free pizzia, they make great snacks that are gluten-free, Enjoy Life has all kinds of cookies, and snacks, Check the brands Ivan's, Udi's, Van's, Enjoy Life, Gerbs, etc. You can get mostly everything gluten-free. Be lucky you can still eat dairy, soy, corn and everything else processed right now. They can grow up eating the gluten-free versions of everything and never know the difference. Switch now and save the hassle, celiaic is genetic, there is a chance your kids might get it even worse then you. Save them the trouble if I was you and start it off right.

 

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While the risk of developing lymphoma is RARE, it is a possibility and it has been documented.  We just lost a forum member to Lymphoma.  Really.  She was real.  I took the time to find her obituary.  I was so sad.  We all became so attached.

Why did she get cancer?  Well lots of reasons, but she was a little shop owner who sold guitars and taught lessons.  She did not make enough to pay for health insurance and  rarely went to the doctor.  Read her story for yourself:

It is not my intent to scare anyone.  The cancer risk returns to normal if you have celiac disease and you are gluten free. But anyone struggling with a celiac disease diagnosis should read the FACTS about this disease from research-supported sources and not take the advice from non-medical personnel, like your Dad, as fact.  We are on this forum to offer advice.  More often is is just to deal with the day-to-day issues of being gluten free.  But medical issues/advice should be researched.  Unless you are EXTREMELY intelligent and have common sense, most of your medical information should come from a person who has a medical degree.  As much as I love reading Dr. Google, I still work with my doctors who might make mistakes, but are still better equipped to deal with medical issues than me.  

You can avoid gluten.  Your doctor is mis-informed.  Chances are he is dealing with  patients (my own GP has admitted that she has two celiac patients who do not adhere to the gluten-free diet) who are not trying hard enough.  It is all about choice.  

I am sorry that you are in diagnostic limbo land.  I am sorry that your case in not clear cut.  But you have two choices: 1) continue to eat gluten until your blood tests validate your diagnosis or assist in going forward with an endoscopy or 2) go gluten free now.   No one can decide that for you.  Only you.  

Good luck.  

Edited by cyclinglady

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23 hours ago, casuallythere said:

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!

Hi CT,

Celiac disease is an autoimmune condition.  Once your immune system learns to fight a pathogen, it will always fight that pathogen.  Eating any gluten ramps up the immune attack on your body.  The immune attack continues until all the gluten is out of your body and the immune system decides it's safe to stop attacking.  It could take months for the immune system attack to settle down again.

So, all that time your body is destroying itself.  People have many varied symptoms including pain, nausea, rash, joint paint, etc.  It's not fun to eat gluten if you are symptomatic.

Reactions / symptoms may change in time also, and get worse.  Or begin to affect other areas of the body.  Some people with celiac develop additional AI diseases also.  There's an idea that people who continue to eat gluten are more susceptible to getting additional AI diseases.  Anecdotal evidence seems to show that.

Sure you can get celiac.  Anyone with the genes can get celiac disease.  People with celiac disease tend to make more zonulin in their guts.  There may be a link between celiac disease and the extra zonulin, gluten, and bad bacteria in the gut.  As in, maybe all 3 need to be present for celiac disease to develop.  So perhaps not eating gluten would protect you from developing celiac disease.  But the final answer on how celiac disease starts is not known yet.  Or how to prevent it.  You have to decide what to do based on what we know now.  Which is more than nothing and less than everything.  But now we see as through a glass darkly.

I hope your dad stops eating gluten.  It's not good for his health and his gut.  There are plenty of other foods to eat that don't have gluten in them,  And lots of gluten-free subs for common foods.

Edited by GFinDC

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