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Just Diagnosed 'probably Non-Celiac Gluten Sensitivity'
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Hi, several months ago I joined this forum thinking I had dermatis herpetiformis. I was absolutely miserable. I had many of the gastro symptoms and an incredibly itchy, horrible rash on my arms.

It turned out not to be DH but my gastro problems persisted. But when I ate gluten free, the gastro issues were virtually non-existent. I was not going back to eating gluten just to test, especially since I had read that the tests were unreliable.

My last colonoscopy and endoscopy (August 2012) showed major diverticulosis, among other conditions (including fibroids and a 'simple cyst' on my ovary. My GI guy sent me for a cat scan and ultrasound and both confirmed the above. I also had low vitamin D and iron.

My primary physician wasn't concerned about the vitamin D and iron and all my other doctors (including the 2 radiologists who read the results) told me these are common conditions in a 65 year old (which I am).

My GI guy knows nothing about gluten, or the effects of food on the gut (can you believe!!). In addition to all the other tests he wanted me to have a capsule endoscopy (where you swallow a camera and it takes hundreds of pictures as it goes through your gut).

At that point I decided to switch GI doctors and found one who works with a nutritionist who was trained by one of the top gluten doctors in the country. I saw her several weeks ago (before having the capsule endoscopy) and she put me on a strict gluten-free diet and asked me to keep a food diary of when I eat, what I eat and how I feel.

Under her care I've been feeling great and only have bloating/heartburn issues when I eat too much food, or food that's not 100% gluten-free.

On Monday I had the capsule endoscopy and got the results yesterday: 'Normal small bowel. No evidence of Crohn's disease or Celiac Disease. Probable non-celiac gluten sensitivity. Recommendations: Continue a gluten free diet.'

Can anyone offer me any advice about this probable diagnosis, what it means and how to proceed? In other words, aside from a gluten-free diet, do I have to buy gluten-free toothpaste, cosmetics, etc?

Also, this probable diagnosis was made as a result of my recent endoscopy, colonoscopy, cat scan, ultrasound, capsule endoscopy and symptoms. How accurate do you feel it is? I am not going back on gluten to do further testing.

Sorry for this long post and thanks very much for your help.

Laura

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Hi Laura,

I havebeen through a similar process in the last few months, an have an NCGI diagnosis after negative gene tests, endoscopy and blood work. I lasted 3 weeks on a gluten challenge.

I have taken my response to eating gluten and being gluten-free as the evidence that I will be gluten-free for life.

There is an increasing body of research on NCGI, but at present the advice I have come across is basically gluten-free diet.

I find all the information about celiac useful too. As intolerance has many of the same symptoms as celiac, without the villi damage or raised antibodies, I am keeping a good eye on research.

Lots of us here are NCGI or self diagnosed, so you should get good answers to any questions here.

Good luck :)

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It is really hard to know how valid the testing is when you have been eating a mix of gluten diet and gluten free. I really don't think you can rely on its accuracy under those conditions. It is obvious that you feel better without the gluten, and that is the way you should eat. Does the reason for this really make that much difference???

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Hi Laura,

So if I got this right, your diverticulitits cleared up after going gluten-free? That would be a pretty strong indicator that the gluten-free diet was helping your gut. How about you iron and Vitamin D? Have they improved yet?

And welcome back! :)

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It is really hard to know how valid the testing is when you have been eating a mix of gluten diet and gluten free. I really don't think you can rely on its accuracy under those conditions. It is obvious that you feel better without the gluten, and that is the way you should eat. Does the reason for this really make that much difference???

Hi Mushroom, you're right, I've been very inconsistent. I can't change the past but now that I have been through all this testing which, by the way, thankfully showed no damage to my small intestines, I'm ready to get serious. And yes, the reason does make that much difference because I read that gluten sensitivity (or intolerance) can morph into celiac disease if you have the gene for it to do so. I don't know how accurate that info is but I read it several times on different celiac websites. So first of all I'm trying to find out if that info is correct. If it is, I will ask my doctor to test me for that gene. If that info is not correct (as much of the info out there is) I don't have to be as concerned about every little glutenous crumb. Because I do feel so much better gluten-free I will never go back to my old eating habits. It's like peeling an onion. Every layer tells another story. Thanks for your input.

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Hi Laura,

So if I got this right, your diverticulitits cleared up after going gluten-free? That would be a pretty strong indicator that the gluten-free diet was helping your gut. How about you iron and Vitamin D? Have they improved yet?

And welcome back! :)

Hi GFinDC, thank you so much!! Actually you got it wrong. I never had diverticulitis, I have diverticulosis which, I'm told, does not go away on a gluten-free diet. Once the diverticulosis pockets are formed they're there for life. That's what my gastroenterologist told me. What did go away on a gluten-free diet is the GERD, the bloating, the stomach pain. I was able to breath easier and deeper. My anger went away. My doctor and I are doing an experiment to see if eating gluten-free stops the colon polyps I keep getting. He's such a cool doctor. I had blood work done in August 2012 and that test showed low Vitamin D and iron. It's too soon to redo that test. I was able to stop Prilosec and some other meds my old gastro guy gave me. My primary said to stay on the diet and when I see him next August I'll have blood work done again. Truthfully I'd rather wait and give my body time to heal then rush into more tests at this point.

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Hi Laura,

I havebeen through a similar process in the last few months, an have an NCGI diagnosis after negative gene tests, endoscopy and blood work. I lasted 3 weeks on a gluten challenge.

I have taken my response to eating gluten and being gluten-free as the evidence that I will be gluten-free for life.

There is an increasing body of research on NCGI, but at present the advice I have come across is basically gluten-free diet.

I find all the information about celiac useful too. As intolerance has many of the same symptoms as celiac, without the villi damage or raised antibodies, I am keeping a good eye on research.

Lots of us here are NCGI or self diagnosed, so you should get good answers to any questions here.

Good luck :)

Hi, thanks very much for responding. I am so glad there's a name for us! My concern is whether a sensitivity or intolerance can morph into celiac because I read that it can if you have the gene for it. I just read that online the other day and I don't know what's involved in getting tested. I guess if I found out I had the gene I would be militant about staying on the diet. Right now I'm not. But I just received the results of the capsule endoscopy on Thursday and I glutened myself this weekend as the last hurrah. Tomorrow I'm off to the health food store to get serious. Before I glutened myself tonight I took a Prilosec (really bad).

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Hi Mushroom, you're right, I've been very inconsistent. I can't change the past but now that I have been through all this testing which, by the way, thankfully showed no damage to my small intestines, I'm ready to get serious. And yes, the reason does make that much difference because I read that gluten sensitivity (or intolerance) can morph into celiac disease if you have the gene for it to do so. I don't know how accurate that info is but I read it several times on different celiac websites. So first of all I'm trying to find out if that info is correct. If it is, I will ask my doctor to test me for that gene. If that info is not correct (as much of the info out there is) I don't have to be as concerned about every little glutenous crumb. Because I do feel so much better gluten-free I will never go back to my old eating habits. It's like peeling an onion. Every layer tells another story. Thanks for your input.

My understanding is that if you carry the genetic predisposition for celiac disease it can be triggered at any time by either physical or emotional stress. Now, whether we can reach agreement on which genes are predispositional for celiac disease is another question. Certainly the vast majority of celiacs have either one or both of DQ2 and DQ8. However, there are celiacs out there who carry neither of these genes so it is not an absolute open and closed case. Many have been told they cannot have celiac disease without either of those genes and have learned to their sorrow that this is not correct. Certainly in Europe there is a wider variety of genes recognized as being involved in developing the disease.

My personal feeling is that it is a little bit cavalier to say that I don't have DQ2 or DQ8, and therefore I'm not going to be as stringent with the diet as I would be if I did. I say this from the position of someone who has never been tested for celiac disease or genes, who has other autoimmune diseases, and lived an almost entire lifetime before self-diagnosing what in retrospect was so bleedingly obvious all along, but which I was assured was all in my head. I don't give a hoot any more what any medical professional cares to say about what I do or don't have or what I may or may not get; I only know I will never knowingly eat gluten so long as it is within my control. Really, it was only in 2011 that these 'experts' decided that there was such a thing as non-celiac gluten intolerance, although we had been talking about it on here for years. Who knows what they will be proclaiming five years hence?

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My understanding is that if you carry the genetic predisposition for celiac disease it can be triggered at any time by either physical or emotional stress. Now, whether we can reach agreement on which genes are predispositional for celiac disease is another question. Certainly the vast majority of celiacs have either one or both of DQ2 and DQ8. However, there are celiacs out there who carry neither of these genes so it is not an absolute open and closed case. Many have been told they cannot have celiac disease without either of those genes and have learned to their sorrow that this is not correct. Certainly in Europe there is a wider variety of genes recognized as being involved in developing the disease.

My personal feeling is that it is a little bit cavalier to say that I don't have DQ2 or DQ8, and therefore I'm not going to be as stringent with the diet as I would be if I did. I say this from the position of someone who has never been tested for celiac disease or genes, who has other autoimmune diseases, and lived an almost entire lifetime before self-diagnosing what in retrospect was so bleedingly obvious all along, but which I was assured was all in my head. I don't give a hoot any more what any medical professional cares to say about what I do or don't have or what I may or may not get; I only know I will never knowingly eat gluten so long as it is within my control. Really, it was only in 2011 that these 'experts' decided that there was such a thing as non-celiac gluten intolerance, although we had been talking about it on here for years. Who knows what they will be proclaiming five years hence?

Wow, you are so knowledgeable. This whole thing is new to me. It started with GERD 2 years ago and I just learned about gluten less than a year ago. According to the regular endoscopy and colonoscopy I had in August 2012, and the capsule endoscopy I had last week, there's no damage to my large or small intestines. The fact that I've been inconsistent has no affect on the test results that showed, at this moment, there's no gut damage. I have the pain, bloating and discomfort without the intestinal damage. I'm very lucky and I will not look a gift horse in the mouth.

I was also amazed that they could tell me there's no gut damage from those standard tests. They said the villi was intact. I thought getting an accurate diagnosis of damage was much more involved. I guess these tests are much more accurate than a biopsy, which only takes a bit of tissue. Because these tests looked at the entire large and small intestines.

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I have to comment on the statement made about low Vitamin D and iron being common in a 65 year old.......they are only common in people with bad doctors who are not investigating why

these 2 nutrient levels are low. Aging does not automatically mean nutritional deficiencies. These 2 conditions are common to Celiacs and others with malabsortion problems but most doctors never go there.

I think you definitely need to be gluten free for life and I hope you are feeling a lot better really soon!

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I have to comment on the statement made about low Vitamin D and iron being common in a 65 year old.......they are only common in people with bad doctors who are not investigating why

these 2 nutrient levels are low. Aging does not automatically mean nutritional deficiencies. These 2 conditions are common to Celiacs and others with malabsortion problems but most doctors never go there.

I think you definitely need to be gluten free for life and I hope you are feeling a lot better really soon!

Thank you! I just read that PPI's like Prilosec cause malabsorption issues and I've been on 2 Prilosec a day for 2 years! Some of the people mentioned deficiencies in Vitamin D and iron. Yikes!! I was able to stop the Prilosec in January due to the gluten-free diet, and a supplement I bought called Heartburn Stop by Renew Life. It's gluten free herbs and minerals that work just as well as Prilosec. I go to my primary for my yearly check up around August, and I bet those tests will be way different than last years.
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You may not need that Heartburn supplement at all soon!

When you say:

"If that info is not correct (as much of the info out there is) I don't have to be as concerned about every little glutenous crumb"

That makes me a little nervous. All my spouses tests and biopsy were negative but he needs to be very careful. He can't just take the hamburger off the bun. I am not sure what you mean and so I am a little nervous for you.

Keep an eye on the dates for anything you read about NCGS. It is a dynamic field of research so ignore the older stuff. Anything Dr. Fasano writes is worth reading.

Good overview article with comments

http://online.wsj.com/article/SB10001424052748704893604576200393522456636.html

NCGS and increased mortality

http://celiacdisease.about.com/od/glutenintolerance/a/Gluten-Sensitivity-Health-Risks.htm

Here's a link to the mortality study cited in the last article:

http://www.ncbi.nlm.nih.gov/pubmed/17206762

Good luck getting those vitamin D and iron levels back up; that will make a big difference in your general health!

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You may not need that Heartburn supplement at all soon!

When you say:

"If that info is not correct (as much of the info out there is) I don't have to be as concerned about every little glutenous crumb"

That makes me a little nervous. All my spouses tests and biopsy were negative but he needs to be very careful. He can't just take the hamburger off the bun. I am not sure what you mean and so I am a little nervous for you.

Keep an eye on the dates for anything you read about NCGS. It is a dynamic field of research so ignore the older stuff. Anything Dr. Fasano writes is worth reading.

Good overview article with comments

http://online.wsj.co...3522456636.html

NCGS and increased mortality

http://celiacdisease...ealth-Risks.htm

Here's a link to the mortality study cited in the last article:

http://www.ncbi.nlm....pubmed/17206762

Good luck getting those vitamin D and iron levels back up; that will make a big difference in your general health!

OMG!! Thank you so much. Those articles are scary. By the way, is it NCGI (Non-Celiac Gluten Intolerance) or NCGS (Non-Celiac Gluten Sensitivity)? I didn't realize how serious this sensitivity can be. That's it!! Every crumb is the ENEMY!!
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I was diagnosed NCGI after a negative celiac gene test. I seem to be pretty sensitive to cross contamination. It is really hard to know at the moment how far to take gluten elimination. I guess I am 'lucky' that I react strongly, as that makes the decision easier.

I am planning to stay on top of the research, and see where it goes.

I was totally convinced that I had celiac from my symptoms, and was very surprised when everything came back negative. My gluten challenge was horrific and I had to give up after 3 weeks. That was a good convincor for me.

Welcome to the club :)

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I was diagnosed NCGI after a negative celiac gene test. I seem to be pretty sensitive to cross contamination. It is really hard to know at the moment how far to take gluten elimination. I guess I am 'lucky' that I react strongly, as that makes the decision easier.

I am planning to stay on top of the research, and see where it goes.

I was totally convinced that I had celiac from my symptoms, and was very surprised when everything came back negative. My gluten challenge was horrific and I had to give up after 3 weeks. That was a good convincor for me.

Welcome to the club :)

Thank you! Actually I'm happy to be in the club because it will force me to take better care of myself. I just called my younger brother and told him what's going on so he can keep an eye out for symptoms. One question though, is it NCGI (non-Celiac gluten intolerance) or NCGS (non-Celiac gluten sensitivity)? I've seen both online. Since I'm in the club I'm just wondering which club I'm in!! Thanks.
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Summer 2011, there was a big deal international conference for gastroenterologists, etc. In fall, 2011, a large group of them published a concensus paper to try to establish the terms used when discussing the various conditions related to wheat (Baker's asthma, celiac, etc) and this paper makes the term NCGS or non-celiac gluten sensitivity, official.

http://www.biomedcentral.com/1741-7015/10/13

Supporting your local celiac group may be a good way to keep up with the latest.

For example, the NFCA has a pretty good webpage on NCS here:

http://www.celiaccentral.org/non-celiac-gluten-sensitivity/

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    • You are right, the tests could be invalid.   All the celiac tests require you to be on a gluten-containing diet.  It is up to you to decide if you want to go gluten free.  You can do it.  Believe me, I know.  Hubby is not officially diagnosed.  He went gluten-free 15 years ago, based on the rather poor advice from my allergist and his GP.  It worked though.  But he would be the first to tell you that I have had way more support in terms of family and medical.    We think he has it.  Both of our families are riddled with autoimmine disorders.  I am the first to be diagnosed.   My Aunt went gluten free per the advice of her Chiropractor.  Her other doctors never suspected celiac disease.  The diet obviously worked for her.  Her daughter (my cousin) is a nurse.  She had an endoscopy but they did not check for celiac disease.  She chose to go gluten-free too since it worked for her mom.  Both will not do a gluten challenge.  However, my diagnosis has helped them get proper medical treatment.  My Aunt is very active in a celiac support group.    Now everyone in my family knows about celiac disease.  My own niece was just diagnosed with Crohn's, but her GI did test and will continue to test her for celiac disease.  You can develop additional autoimmune disorders at any time.   So far, a few other members have been tested.  No one else had had a celiac disease diagnosis yet.  Time will tell.  If I can save someone from the misery of struggling to get a diagnosis, then I can feel good.   Now, an official diagnosis will help you adhere to the diet .  You can get follow-up care.  Get checked for other things like SIBO, H. Pylori and cancer.  But ultimately, it is up to you.   Whatever you decided to do, please consider a family health history chart.  You might someday help a grandchild.   The stool tests?  In all my research, leading celiac experts do not recommend them.  http://www.cureceliacdisease.org/faq/why-dont-you-recognize-tests-stool-tests-or-otherwise-for-gluten-sensitivity-that-are-currently-available-through-companies-like-enterolab-or-cyrex/ gene testing?  Some 30% of the poulation carries the celiac genes.  It just tells you that you have the chance to develop celiac disease.  It can not diagnose you.    
    • The procedure is a breeze. You will go in, be sedated and go to sleep for a short nap and then it's over. Some people will have a bit of a sore throat but not everyone does. For me the hardest part of the endo was not being able to drink coffee when I got up. You seem to have been back on gluten for long enough to have the test but as CLady said there is a good chance your blood work may be negative. In your case you may want to continue eating gluten after the biopsy at least until you get your blood results. If they are negative consider going a bit longer and getting them redone.
    • I think the gene tests are accurate.  Not sure if thier interpretation of them is.   If you actually think have Celiac, you need to know that.  You  need to know how careful you must be.  You need a diagnosis to get gluten-free food in hospitals or nursing homes (if you can find one that does gluten-free food).  Because thsese "stool tests" are not medically accepted, it is unlikely that a real medical facility will consider you to have Celiac.   http://www.cureceliacdisease.org/faq/why-dont-you-recognize-tests-stool-tests-or-otherwise-for-gluten-sensitivity-that-are-currently-available-through-companies-like-enterolab-or-cyrex/
    • Why would your doctor order an endoscopy and check for celiac disease, but not order a celiac panel?  Had you been gluten free already?  
    • Thanks cyclinglady ... just wondering, do most of the people on this forum believe the Enterolab stool / gene testing to be non-trustworthy? Or are you just recommending a diagnosis from my MD so that she is also treating me with full belief/knowledge of my condition? I've been gluten free now for 2 weeks - by the time I get in to my doctor, she orders the bloodwork and I get to a lab it could be another 2 weeks before the bloodwork is done. From what I understand, just a month of gluten free eating could skew the results of the blood test. Supposedly, the stool tests are much more accurate. I hate to go backwards and start eating gluten again just so I can have a blood test done that may or may not substantiate the results of the stool / gene testing. I'm so confused ...
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