Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Clarification Please
0

13 posts in this topic

I know the difference between celiac and gluten intol. is that-

1- celiac has the villi wearing away- GS does not

2- celiac is autoimmune- GS is not.

Where I'm confused is:

Is GS genetic like celiac? or not? I am finding conflicting info on the internet, but I am not sure if it is because some websites are interchanging the two terms. Some sites say it is not. What are your thoughts?

Also is NCGS life long like celiac? I am coming across some places that say you might be able to introduce gluten again after a time. What has been your experience?

1

Share this post


Link to post
Share on other sites


Ads by Google:

There is not much research done yet on gluten intolerance. That's why you are finding conflicting info. Many things out there are based on opinions and personal experience instead of research. It is my opinion that celiac disease is just one form of gluten intolerance and in the future they may have other forms of gluten intolerance that they can test for with speciific tests. The tests for celiac are not currently 100% accurate, however. There are many false negatives so that people that have negative tests, but positive results with the diet, end up being labled as "just gluten intolerant". Because of the flawed testing, it's my opinion that gluten intolerance is every bit as serious as celiac disease and also requires a life long gluten-free diet. Until there is better testing and more research done we have no way of knowing if people with "gluten intolerance" are really celiacs that don't show up on testing or if they have a different condition altogether.

2

Share this post


Link to post
Share on other sites

Yes, gluten intolerance seems to run in families. I haven't seen any genetic studies because gluten intolerance is not a well enough defined clinical diagnosis to even choose people on whom to do genetics.

There is a "board think" here that celiac and gluten intolerance are always lifelong. This is not the case, even with celiac disease. If you read the medical literature, there are documented cases of biopsy confirmed celiacs who become able to consume a normal diet again with no ill effects or villous damage. It's most common where DH is the only symptom. I wouldn't encourage board members to go off and try eating gluten again, as regaining tolerance is not the norm, but it's something to be aware of.

Similarly, my doctor has said he has seen people who were gluten intolerant recover, and that the degree of ones gluten intolerance can change over time. I've read this in articles around the Internet as well, though I consider my Dr. a better resource. Really, just about any allergy or intolerance can come and go somewhat unpredictably. With intolerances it may be related to changes in intestinal microflora, and allergic desensitization is a well documented phenomenon.

I do agree with GlutenFreeManna, that it is very difficult to discriminate between non-celiac gluten intolerance and undiagnosed celiac disease. Further, there is fairly convincing evidence that gluten intolerance is the first step in developing celiac disease, which makes consuming gluten a risky proposition if you are gluten intolerant.

2

Share this post


Link to post
Share on other sites

I know the difference between celiac and gluten intol. is that-

1- celiac has the villi wearing away- GS does not

2- celiac is autoimmune- GS is not.

Where I'm confused is:

Is GS genetic like celiac? or not? I am finding conflicting info on the internet, but I am not sure if it is because some websites are interchanging the two terms. Some sites say it is not. What are your thoughts?

Also is NCGS life long like celiac? I am coming across some places that say you might be able to introduce gluten again after a time. What has been your experience?

Hi, I have read that there is Celiac Sprue [celiac Didease] & Celiac sensitivity [when all blood work positve but biopsy normal] & Gluten intolerance [allergy testing]. It has been said that a confirmed biospy diagnosis can only Rule celiac In, it cannot rule it out [ Clinically pertinent coeliac disease exists despite normal small-bowel mucosal villous architecture]. And all diagnosis and sensitivity and intolerance Need be addressed and patient needs eat gluten free for life before damage can be done through immune system, neurological damage or small intestine damage. They say autoimmune if shows in blood work or biospy. It`s a lot to learn and we all must seek our answers because doctors are not going to give the answers we need. Great that you brought up this topic, terri

0

Share this post


Link to post
Share on other sites

Yes, gluten intolerance seems to run in families. I haven't seen any genetic studies because gluten intolerance is not a well enough defined clinical diagnosis to even choose people on whom to do genetics.

There is a "board think" here that celiac and gluten intolerance are always lifelong. This is not the case, even with celiac disease. If you read the medical literature, there are documented cases of biopsy confirmed celiacs who become able to consume a normal diet again with no ill effects or villous damage. It's most common where DH is the only symptom. I wouldn't encourage board members to go off and try eating gluten again, as regaining tolerance is not the norm, but it's something to be aware of.

Similarly, my doctor has said he has seen people who were gluten intolerant recover, and that the degree of ones gluten intolerance can change over time. I've read this in articles around the Internet as well, though I consider my Dr. a better resource. Really, just about any allergy or intolerance can come and go somewhat unpredictably. With intolerances it may be related to changes in intestinal microflora, and allergic desensitization is a well documented phenomenon.

I do agree with GlutenFreeManna, that it is very difficult to discriminate between non-celiac gluten intolerance and undiagnosed celiac disease. Further, there is fairly convincing evidence that gluten intolerance is the first step in developing celiac disease, which makes consuming gluten a risky proposition if you are gluten intolerant.

Wow Skylark, thanks for sharing this info, these were thoughts I have tossed around in my head and concluded much the same that you confirmed and articulated so well for me and others. Terri

0

Share this post


Link to post
Share on other sites




At least they're finally recognizing gluten sensitivity. You might like to read this interview with Dr. Fasano at the University of Maryland School of Medicine's Center for Celiac Research.

0

Share this post


Link to post
Share on other sites

Nice article. I love when he says "The patients, as usual, were visionary, telling us this stuff existed but healthcare professionals were skeptical."

I don't agree 100% with Dr. Fasano that gluten sensitivity is not a precursor to celiac. There are studies linking IL-15 produced in gluten sensitivity to development of celiac disease. Dr. Markku M

0

Share this post


Link to post
Share on other sites

At least they're finally recognizing gluten sensitivity. You might like to read this interview with Dr. Fasano at the University of Maryland School of Medicine's Center for Celiac Research.

Yes , you are so right that they are or need to recognize `gluten-sensitivity` especially if had bloodwork show strong-high-positive.

The experts say the following "Clinically pertinent coeliac disease exists despite normal small-bowel mucosal villous architecture. Mucosal transglutaminase 2-specific IgA deposits can be utilized in detecting such patients with genetic gluten intolerance."

I always learn from you Sylvia, thanks, Terri

1

Share this post


Link to post
Share on other sites

So if one is positive on the blood work, but ends up negative on the biopsy, I should consider them gluten intolerant? To be on the safe side, should I have their siblings tested as well? It is better to assume there is a genetic component until studies prove differently.

0

Share this post


Link to post
Share on other sites

In the interview the Dr. said if you are GS you will feel better quickly, in days or weeks.

But if you are celiac it will take weeks, months, or years.

Do you find that to be true?

0

Share this post


Link to post
Share on other sites

So if one is positive on the blood work, but ends up negative on the biopsy, I should consider them gluten intolerant? To be on the safe side, should I have their siblings tested as well? It is better to assume there is a genetic component until studies prove differently.

No, a positive on celiac bloodwork indicates they are for sure celiac. Biopsies can miss the damage--the dr may not take enough biopsies, damage can be patchy (they are not able to see it during the endo only after they take a sample out and put it under a microscope), or dammage can be in one place and endoscopy does not reach the entire length of the intestines. The positive blood tests and something like 99% accurate. If they have all negative tests (bloodwork and biopsy), but still respond well to trying a gluten-free diet then they should be considered gluten intolerant or they may be celiac anyway since negative tests have about a 20% false negative rate.

0

Share this post


Link to post
Share on other sites

In the interview the Dr. said if you are GS you will feel better quickly, in days or weeks.

But if you are celiac it will take weeks, months, or years.

Do you find that to be true?

I would love to pick the dr's brain about this a little more and see what his context is for making this statement. Is he talking about only people who are diagnosed in older age or everyone? It seems like a very generalized statement to make and doesn't really make sense when you conside r the difference between people diagnosed early in life and people diagnosed later in life. Even amoung biopsy diagnosed celiacs there is a range of damage. And there is also a range of symptoms--some symptoms take longer to go away than others. DH can take months to go away after a flare up. Diarhea may go away in just a few days. Vitamin deficiencies can take months to years to recover from too. It's just going to vary from person to person I'm afraid. I think the dr is implying that gluten sensitive people don't have damage or vitamin deficiencies and therefore they should feel better faster but I know many gluten sensitive people on this board that test negatvie but have neuorogical symptoms and neuro damage that has taken years to recover from. My own experience has been a slow process of rebuilding my muscles, dexterity and memory, as well as treating vitamin deficiencies over the past 18 months. Bloating and gastro issues went away right away. Fatigue, joint pain, muscle pain, etc took longer. Since I didn't do any testing I wonder if the dr would call me celiac or if he would call me gluten intolerant? I think I will respectfully diagree with the dr until they have better tests for celiac disease and have some better definitions of "gluten sensitive".

0

Share this post


Link to post
Share on other sites

I also think that is interesting about the gluten sensitive people feeling better more quickly than celiacs. I don't know which one I am either. My worst symptom was anxiety but I didn't know that this was the cure. As far as my GI issues. I had horrible bloating, cramping, heartburn, constipation, and gas and the doctor suggested trying gluten free for a month. Those symptoms started to resolve within a week. The anxiety has been a surprise. A couple weeks in I could go to bed with no anxiety and I used to be so anxious I would keep myself awake out of fear I wouldn't wake up (crazy I know). I got sick as well which before would have me worried something was seriously wrong with me and I would have panicked but I didn't worry about it. I still get anxiety now, but I can sense it coming and talk myself through it much better now. I am hoping in time it goes completely away. So, with as long as I have been gluten free I will never be able to get tested and my anxiety was so bad I am not going to challenge for a test. So I guess stick with it even though I would love to know for sure if I am celiac or not.

0

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
      104,142
    • Total Posts
      919,558
  • Topics

  • Posts

    • Yes!  With dairy, celiacs can often have a temorary lactose intolerance due to damaged intestinal villi (where the enzymes normally are released to digest lactose).  Of course you could be naturally lactose intolerant based on race or age.  It is best to stick to a whole foods diet while you are healing.  Really, is ice cream or potato chips going to provide you with nutritional value?  Stick with naturally gluten free foods like meat, fish, fats,  veggies (even those with carbs like sweet potatoes or winter squash) and fruit.  Avoid that processed junk as you may react to the additives right now.  Later, you can add back in dairy (test) and other foods you miss and crave.   Good luck!  
    • Take a deep breath and calm down!    The incidence of cancer with Celiac Disease is rare.......it can happen but the vast majority of people never have that experience.  You may have somewhat enlarged lymph nodes due to inflammation from undiagnosed Celiac but that will all calm down and go away once you get going on the diet.  Believe me, there are many of us that have things happen during the diagnosis and early recovery period and everything turned out just fine.  There is an elevated risk for some cancers with Celiac but that risk goes back to that of the general population after a couple of years on the gluten-free diet. I cannot remember the exact time frame but it is somewhere between 2-4 years, I think.  So many of us went years without a diagnosis and when it was all figured out, we have gone on to be healthy with little complications.  Really...do  not worry about this.  Concentrate on learning all the ins and outs of this disease and how to live gluten free happily.  We are here to help you and guess what? The diet is not as bad as some make it out to be. Many things can be made gluten free and are every bit as good as their gluten counterparts. The diet may not be convenient but it is not hard. I would not lie to you!   
    • Well....one common symptom that most celiacs have when they are diagnosed (or undiagnosed) is anxiety.  So, there is a risk of cancers, but science has demonstrated that that risk goes down on a gluten free diet (if you have celiac disease).  In goes down to the same risk as those without celiac disease.   I kind of was a basket case.  I drive my family a bit crazy because I was anxious.  I felt a bit stupid too.  I guess I had a little brain fog going on too.  All that resolved after I healed. Welcome to the fourum.  Read our Newbie 101 thread under "Coping" (pinned at the top of the page) and learn about hidden sources of gluten and cross contamination.  I think most of us do not worry about cancer. We mourn the freedom to eat anything anywhere!   I did not have swollen lymph nodes, but I am sure others have and they did not have cancer.  Hopefully, they will chime in and set your mind at ease.  If not, you can search for "lymph nodes" at the top of the page (little magnifying glass).  There are lots of members with the same issue!  
    • I was recently diagnosed as having celiac and to be honest the part I'm having the most trouble with isn't the change in food or lifestyle. I'm really upset about what I've read about the risk of cancer increasing with celiac disease. I think this is playing into my fears because I currently have lymph nodes all over my body-my Doctor says they are not considered swollen or concerning, but I don't usually feel nodes. The lymph nodes and horrible diarrhea for the last 3 weeks were what got me into the the doctor for lab work. My blood work came great so I'm wondering if anyone else experienced lymph nodes reacting when they found out they were celiac? Also how do you deal with anxiety surrounding the increased risk of cancer? Thanks!
    • Wow I'm gonna be a skinny Minnie in no time rather than a bloated and confused Thankyou I'll try look at these images 4 days gluten free
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,173
    • Most Online
      1,763

    Newest Member
    Mnoosh
    Joined