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Has Anyone Had, Or Does Anyone Know Of A Specific Test For Non-Celiac Gluten Senitivity (Ncgs)?

MsCurious

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MsCurious Enthusiast
MsCurious
Posted

Guess I was so excited to find that I didn't have celiac disease, and then it hit me... I still have the same issues to face every day. I know I've read research info that said there is a test (maybe more than one I don't know) for gluten intolerance (aside from celiac testing). Has anyone had this? If so can you tell me what test it is, or any information about it?

I'm sort of feeling discouraged and lost a little again. I didn't expect this to be such a roller coaster ride. I just want to feel better. :( Its like, I know how I feel, but then the doctor tells me, no you're fine. But I know I'm not fine, so I'm sort of back to square one in a way. Bleh, its like facing the same ole thing... just trying to convince myself that its "normal" ... to feel this way. After all, its been normal for me for so long, maybe I'm just not "tough enough" ... Sorry, I shouldn't be dumping here... just feeling so lost and sad about not having any answers. Maybe it would have been better to have all kinds of positives. Not sure I should be taking up your time here, if I don't have celiac disease, so Thanks for your help... and I don't think I'll bother you all anymore unless I find out something positive. Maybe its just IBS or something. Good grief... now a few tears...what's up with that? I'm TOUGHER than this!

Thanks again everybody, and I hope you all get well, feel well, stay well and happy!

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Cypressmyst Explorer
Cypressmyst
Posted

Current testing methods miss a lot of people both for Celiac and overall Gluten Syndrome. You can get anti-gliadin tests run or find a doctor who will work with Cyrex labs and get the Ten protein test done through them. I am non-celiac gluten sensitive and had positive anti-gliadin anti-bodies when tested. I am also getting the ten protein and autoimmunity test done to see what other proteins I am reacting to in Wheat (there are 70 total).

The best and cheapest test you can do is to try the diet 100% for one month and see how you feel. IBS and feeling like crap in general are very closely linked to gluten as the culprit as are other auto-immune disorders, diabetes, heart disease and cancer.

Your body is the most sensitive test equipment out there. Give it a go and see how you feel. I'd be willing to bet you will see a vast improvement.

:hugs:

Let us know how it goes and please use us as a resource/support along the way! B)

ravenwoodglass Mentor
ravenwoodglass
Posted

This is actually the place to 'dump' your feelings. I know how you feel. I was literally dieing and they kept running the tests over and over and then saying 'nope your not celiac' and never told me anything about what it was they were even testing for. I was sent to one of the best hospitals in NY where they would draw up to 13 tubes of blood at a time and had every test imaginable and even when they found brain lesions (diagnostic of celiac that has attacked the brain but the neuro was clueless) and had flat line electromylograms, was up for hours every night so sick and in pain that I would almost pass out, even when I could eat nothing without getting immediately sick and couldn't walk without falling over and my arthritis was so bad I couldn't hold a coffee cup or a pen the doctors went by those darned blood tests and just pumped me full of pain pills and told me I either wanted to be sick 'it's all in your head' or I needed to learn to 'live with the pain' not a single doctor ever told me of the high false negative rate and suggested I try the diet.

Please when you are done with testing try the diet. It took a very elderly allergist who overlooked the tests and put me on an elimination diet to recognize that those were false negative tests. He immediately sent me back to my GI who demanded another challenge that caused a severe GI bleed and finally diagnosed me. Within 6 months I was a different pain free person. After being sick for over 40 years I finally know what normal is, and it is not being in pain and sick all the time.

I hope you will give the diet a good strict try, be patient with your body as it takes a bit of time to heal. You are in a great place for support and knowledge about how to give the gluten-free lifestyle a good strict try. I hope you get some relief. We are here for you.

cassP Contributor
cassP
Posted

i'll have to hunt for the link later, as i am running to work.. but i had read that there were thousands or tens of thousands of proteins in wheat.. that there were more different proteins in wheat than there were in the human body... and that most animals and humans have not evolved to digest it

MsCurious Enthusiast
MsCurious
Posted
  • Author

This is actually the place to 'dump' your feelings. I know how you feel. I was literally dieing and they kept running the tests over and over and then saying 'nope your not celiac' and never told me anything about what it was they were even testing for. I was sent to one of the best hospitals in NY where they would draw up to 13 tubes of blood at a time and had every test imaginable and even when they found brain lesions (diagnostic of celiac that has attacked the brain but the neuro was clueless) and had flat line electromylograms, was up for hours every night so sick and in pain that I would almost pass out, even when I could eat nothing without getting immediately sick and couldn't walk without falling over and my arthritis was so bad I couldn't hold a coffee cup or a pen the doctors went by those darned blood tests and just pumped me full of pain pills and told me I either wanted to be sick 'it's all in your head' or I needed to learn to 'live with the pain' not a single doctor ever told me of the high false negative rate and suggested I try the diet.

Please when you are done with testing try the diet. It took a very elderly allergist who overlooked the tests and put me on an elimination diet to recognize that those were false negative tests. He immediately sent me back to my GI who demanded another challenge that caused a severe GI bleed and finally diagnosed me. Within 6 months I was a different pain free person. After being sick for over 40 years I finally know what normal is, and it is not being in pain and sick all the time.

I hope you will give the diet a good strict try, be patient with your body as it takes a bit of time to heal. You are in a great place for support and knowledge about how to give the gluten-free lifestyle a good strict try. I hope you get some relief. We are here for you.

Raven, reading this brought me to tears... For me, for you, for so many that suffer and don't know where to begin, or how to make sense out of all the medical terms and tests and things. I've been trying to figure out if I should even bother with the medical world and just go gluten-free for myself. So that's what I'm struggling with right now, but last night after I logged off from reading a zillion posts, I wasn't tired enough to fall asleep so I grabbed my smartphone and googled Gluten Intolerance, and oddly, a post came up from this same site, written October 2010. I don't remember the name of it ... Something like "I was just diagnosed as Gluten Intolerant"... and I read it. There was so much info in there that opened my eyes to some testing and things of which I was not aware. I guess I'll sort through that again and "try" to talk to my doctor about it first, but really I'm so ready to go gluten-free. I know it will be hard...at first at least, but I just want to feel better so much that it doesn't matter if its hard. I went to take my vitamins today and have a new bottle... didn't open it. Called Centrum and they said, no we can't tell you that its gluten free. My first hurdle... now I have to find a new multivitamin, and I have to take them because my vitamin D level and calcium, and iron etc are all like one point over the "minimum" and that's WITH taking vitamins religiously. Then I went to brush my teeth and thought.... ummm. I wonder if I have to worry about toothpaste? I have no idea...its all overwhelming. Do you know of a good source for changing your life over to gluten-free? Anybody? I'm struggling with how to go about this. I'm giving my doctor this week to move forward in a helpful positive direction with me. If he doesn't or is resistant, I'll do it on my own. So sick and tired of being sick and tired... Thank you again Raven for your supportive and kind words. Means so much to me ... really really helps when I feel like I'm struggling so much with this. I'm sure it will get better... I guess its just the getting educated part that seems so overwhelming. Thanks again.

MsCurious Enthusiast
MsCurious
Posted
  • Author

Current testing methods miss a lot of people both for Celiac and overall Gluten Syndrome. You can get anti-gliadin tests run or find a doctor who will work with Cyrex labs and get the Ten protein test done through them. I am non-celiac gluten sensitive and had positive anti-gliadin anti-bodies when tested. I am also getting the ten protein and autoimmunity test done to see what other proteins I am reacting to in Wheat (there are 70 total).

The best and cheapest test you can do is to try the diet 100% for one month and see how you feel. IBS and feeling like crap in general are very closely linked to gluten as the culprit as are other auto-immune disorders, diabetes, heart disease and cancer.

Your body is the most sensitive test equipment out there. Give it a go and see how you feel. I'd be willing to bet you will see a vast improvement.

:hugs:

Let us know how it goes and please use us as a resource/support along the way! B)

Thanks Cypressmyst. A lot of the things you talk about here are things I have been trying to sort through. You said you're getting tested for more things... so does that mean you're on gluten right now? Did you have to go back to it for the testing? How did you get tested for NCGS? Did your doctor suggest it, or did you have to twist doc's arm to get the testing done? I had heard that they are making progress with finding tests to identify the non-celiac gluten sensitive people. It kind of feels like we're a lost bunch. It's amazing now that I've identified gluten as the "other" culprit how I look at things as poison, rather than something I want to eat. I'm sure that will change back again when I can figure out and learn all the flour substitutes, etc. That's another thing... guess I need to find some good cookbooks. Thanks again for your supportive words. Thanks for taking the time to share your knowledge with me.

MsCurious Enthusiast
MsCurious
Posted
  • Author

i'll have to hunt for the link later, as i am running to work.. but i had read that there were thousands or tens of thousands of proteins in wheat.. that there were more different proteins in wheat than there were in the human body... and that most animals and humans have not evolved to digest it

Good grief! No wonder its making us all so sick! (sheesh,I wonder if that's what's making our dog sick) Thanks for the info Cass.

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ravenwoodglass Mentor
ravenwoodglass
Posted

Good grief! No wonder its making us all so sick! (sheesh,I wonder if that's what's making our dog sick) Thanks for the info Cass.

Dogs can actually have a form of gluten intolerance, it's fairly common in some breeds but the only one I can think of off hand is the Irish Setter. Many of us make our pets gluten free when we go gluten free to prevent CC and find they do much better on a grain free diet.

mushroom Proficient
mushroom
Posted

I had an Abyssinian cat and the poor wee thing was forever throwing up her food. I had her to the vet so many times and he kept changing out her food, always to foods with more grains!! it seemed. I bet now that she was gluten intolerant all along. :( However, she would not eat plain meat!! whether raw or cooked. She would eat yogurt though.

cassP Contributor
cassP
Posted

Good grief! No wonder its making us all so sick! (sheesh,I wonder if that's what's making our dog sick) Thanks for the info Cass.

yes- google Dr. J and his "G.A.R.D. diet"... he's a veterinarian with Celiac. and most of his theories/writings involve how gluten/wheat, dairy, soy, and corn seem to negatively affect his animals as they do many humans.. including skin & neurological disorders... its all very interesting... people find him controversial- but i think he's a very nice guy who's really on to some truths.. i sent my cousin to his website- cause my cousin is allergic to dairy & wheat, and gets seizures from aspartame. she told me her doc wants to test her for Celiac- but i told her- that the tests will be innaccurate if she's not eating gluten.. but she cant eat wheat cause she's severely allergic... so frustrating..

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