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.
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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.
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I haven't read the whole site, but this looks like good info on FODMAPS
http://www.ibsdiets.org/fodmap-diet/what-are-fodmaps/
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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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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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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/
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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
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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.
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Thank you very much for all of your help. I really appreciate it!