• 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.

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:
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
Ads by Google:


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
      107,373
    • Total Posts
      935,737
  • Member Statistics

    • Total Members
      65,053
    • Most Online
      3,093

    Newest Member
    RichardNDL
    Joined
  • Popular Now

  • Topics

  • Posts

    • Hi.  I'm new to this!  Please help me get started. I want to try..I mean DO...a gluten free life so that, hopefully, my health issues will go away. So, please help me.
    • Hello. I apologize for this being long but I feel I should explain the situation so you better understand where I'm coming from. I am here because I do not have the time or money to be galavanting around to different doctors offices. I spent time doing that already, lost money out of my pay from not working but never found A SINGLE ANSWER.  I am a 23 year old female and back when I was about 13-14 I was diagnosed with Mononucleosis. Prior to this, I had been having other issues, or at least the minor problems I had previously considered as 'growing pains' since that's what my primary at the time attributed my pains to. Well now i'm 23 and it's only gone downhill since then. Back then I was told by a GI doctor who had done two or three EDG's and two colonoscopies that I have "the enzymes for crohn's and need to be careful." No other explanation other than eat 'gluten free'..... Now, this was kind of when it was the new 'health fad' for people, so being so young my logic was 'I'm young, I should be able to do what I want and eat what I want without worry!" so that's what i continued to do, despite feeling overall unwell. (I had really always felt unwell so it wasn't really that big of a deal for me)  Now that i'm older, i've literally experience an entire swath of issues. The only reason I am here is because I am now thinking back to that conversation with the GI Doctor that maybe she was right. While I do have insurance, I honestly don't really have the money to be shelling out for these tests all over again as I was lucky the first time around when my grandparents had taken me since I was underage.  My symptoms over the years and continuing have been: (in full, some may have nothing to do with the another)
      Lower back problems, feeling like sciatica but never confirmed. X-rays, MRIs, etc show nothing despite the intense pain. Drs now refuse to do more tests for 'nothing'. So I am left to handle feeling like an elephant is sitting on my lower back, right above my tailbone. (I did fall on that around 12 or 13 but doc never called back after testing, assumed i was fine...)
      Stomach cramping/spasm feelings
      On and off nausesa, any time of day.
      Inability to sleep. 
      Constant changes from hot to cold. (Original doctor has said over the years my temperature seems to run higher than normal. I almost always feel feverish even if only slightly.)
      Headaches/migraines
      Fatigue
      Lightheadedness at times
      Restless legs (DRIVES. ME. INSANE. The muscle relaxers i've been given just made it 1000000x worse! I was so sleepy but couldn't fall asleep due to the restlessness.)
      On and off diarrhea / constipation (I don't know what a 'normal' bowel movement is)
      Costochondritis that has come and gone since I was in 4th grade. (I remember the day because it was April Fools day and everybody thought I was faking the serious pain I was in. I could barely breathe, it felt like my tendons/muscles were being torn apart on the inside) .  I believe this is what my original DR thought was 'growing pains', except they never stopped even after I was finished growing..
      I used to get sick very easily - for about two years it seemed to clear up then i started getting infections non-stop.
      There are some .... embarrassing things... Such as despite how many times I clean myself I feel like i'm.... leaking.......... 
      Sharp/ache like pains everywhere in my body.
      There are likely many other things that I'm just so used to I'm not listing because I'm not sure if they're even related.



      I am just so tired of feeling like dog crap. I've never felt 100%, ever. For as long as I can remember i've always had issues but I come from a family that kind of just.... deals with their problems and not complain 24/7. After years of that, I need help. I am absolutely fed up not being able to do things because I just feel generally crappy. It's seriously depressing and making my depression and anxiety worse. Is testing for a second time worth it? If it is, what tests should I really be focusing on to figure out if this is my problem?
    • Thanks for the responses raven and cyclinglady!  I guess we just have to wait.  Is it wrong that I want there to be no question that its celiac?  She has had so many symptoms for awhile now--seemingly increasing--but I want there to be no question in her mind that she needs to be gluten-free--you know? For now we are working on eating gluten-free but I haven't really tackled the whole cross-contamination thing yet and looking into my freezer, fridge and pantry I have a decent amount of gluten that the rest of us will eat.  Then I guess I'll decide how gluten-free the rest of us should be. On a side note--the gi ran a bunch of tests prior to the biopsy--I haven't seen the results--but they mentioned over the phone that her white blood cells were high--maybe due to celiac?    
    • https://okinawahai.com/tips-for-eating-gluten-free-in-okinawa/ Hope this helps!
    • Sorry you're feeling poorly Have you seen this page: https://www.peoplespharmacy.com/2015/07/27/getting-off-ppis-can-be-a-challenge/ I think you can get gluten free DGL, maybe worth a try?
  • Upcoming Events