• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Just Diagnosed 'probably Non-Celiac Gluten Sensitivity'
0

16 posts in this topic

Recommended Posts

DogWalkerNYC    18

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

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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 :)

Share this post


Link to post
Share on other sites
mushroom    1,205

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???

Share this post


Link to post
Share on other sites
GFinDC    609

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! :)

Share this post


Link to post
Share on other sites
DogWalkerNYC    18

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.

Share this post


Link to post
Share on other sites
Ads by Google:


DogWalkerNYC    18

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.

Share this post


Link to post
Share on other sites
DogWalkerNYC    18

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).

Share this post


Link to post
Share on other sites


Ads by Google:


mushroom    1,205

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?

Share this post


Link to post
Share on other sites
DogWalkerNYC    18

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.

Share this post


Link to post
Share on other sites
Gemini    785

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!

Share this post


Link to post
Share on other sites


Ads by Google:


DogWalkerNYC    18

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.

Share this post


Link to post
Share on other sites
RollingAlong    15

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!

Share this post


Link to post
Share on other sites
DogWalkerNYC    18

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!!

Share this post


Link to post
Share on other sites

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 :)

Share this post


Link to post
Share on other sites
DogWalkerNYC    18

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.

Share this post


Link to post
Share on other sites


Ads by Google:


RollingAlong    15

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/

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      107,921
    • Total Posts
      938,703
  • Member Statistics

    • Total Members
      65,850
    • Most Online
      3,093

    Newest Member
    rachellelnd@gmail.com
    Joined
  • Popular Now

  • Topics

  • Posts

    • Ah yes... dry beans. I am fortunate to live near a plant that only processes beans, pulses and rice (Western Rice Mills if you're on the west coast). I doubt that they test, but I would suspect that the biggest part of the risk with that type of food is in the plant where they pack them, as things like barley pearls and wheat berries are often sold as dried goods and would probably be done on the same lines. I would agree that dry beans could be problematic depending on source. 
    • No, Armour has always been gluten free.  The formulation changed a few years back and during the switch, there was a shortage.  That has long since resolved.  Forest Pharmaceuticals (manufacturer of Armour) was bought out by Activas in 2015.  They increased the price!  Now it is comparable to synthetic.   Imtried to find a good and reputable source about the history of thyroid replacement.  Here is one link -- the story is pretty accurate, but the site is trying to sell you stuff.   https://thyroidpharmacist.com/articles/the-history-of-natural-desiccated-thyroid-medications/  
    • If she is now at a public school, accommodations can be made for disabilities.  Here is a link that explains a 504 plan and an IEP, but you will have to investigate based on your state.   https://www.foodallergy.org/education-awareness/advocacy-resources/section-504-and-written-management-plans https://www.understood.org/en/school-learning/special-services/504-plan/the-difference-between-ieps-and-504-plans http://kidshealth.org/en/parents/504-plans.html https://www2.ed.gov/about/offices/list/ocr/504faq.html i am not very knowledgeable about this subject, so I encourage you to contact your school district for help.  Your doctor might be a good resource too.   You might consider homeschooling until she has been diagnosed and has received treatment.  The Department of Education can direct you to homeschooling resources.  There are lots of wonderful programs out there and you can get financial support.   I wish you all well!  
    • You make a good point about being neurotic. I'm slowly getting better. I guess time will tell. But thank you for the insight.   As far as roommates go, that's a good idea. I've definitely been thinking about that. But these guys are my best friends and the process of getting a new roommate this late in my schooling might be hard. Although, I will keep my eye out for the opportunity. 
    • Hello I understand what you are going thru. My son almost died from going 27 years without figuring out it was gluten and then corn causing all the illness. I brought him to Drs, none of them figured out gluten intolerance. Oh they told us he had everything else. Then as time went on, he found out he has issues with corn. Corn has identical genetic make-up as gluten.  Corn is sneaky and everywhere. Contact the manufactures, ask them if there is a chance of contamination or corn ingredient in their products. My son gets neurological problems when gluten/cornized. Anxiety, obsessive thoughts, can not think. He had to be taken out of school and homeschooled. He just found out the digestive enzymes he was taking contain an enzyme that is grown on barley. Enzymedic basic.  My suggestions for you are, seriously go find another place to live. You need your mind and health to continue school. If you don't and continue living where you are, school will suffer. In your spare time, find out all you can about gluten and what other foods act like gluten in the body. Like I said, corn has the same genetic make up as gluten, some people can not eat rice either. This is something that is doable, it is just becoming very aware of what goes in the mouth. Please find another place to live. You don't need to deal with those jerks, you have enough going on with school and health. There might be other people in your school that are celiac or gluten sensitive. Find them, post notes up, start a newsletter about gluten free lifestyle. I bet there are many people that would welcome that newsletter.  You don't need to do this alone!   You are the most important person in your life, you deserve to feel good and be respected! Stay away from those that don't respect you. Search out those that will.  Eating out is something that can be done, find those places that will work with you. Ask to have burgers or meat cooked on aluminum foil. Fresh veggies, fruits all gluten free. Again, research restaurants in your area willing to work with you. Even call the manager and talk to them. All the best to you!  Hang in there.   
  • Upcoming Events