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

  • 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Celiac Vs. Gluten Intolerance
0

19 posts in this topic

One thing I've noticed since my celiac diagnosis is that there seems to be this division between confirmed celiacs and gluten intolerants. I'm new to celiac and I'm only wanting to get well and be well. I've had several conversations with people about the gluten free diet and several of those with gluten intolerance get defensive of their illness. You don't have to prove to me or anyone else that you don't feel well. If the gluten free diet is working for you then by all means continue. We are all in this together and we ned to support each other regardless if the medical community gives you a certain stamp, or not. It took the medical community 34 years to give me any kind of real answer to my issues. Honestly, I've little faith in modern medicine. I don't think we should let someone else confirm If we're ill or not. I don't know if others have experienced or sensed this as well but let's all come together on the war against gluten.

0

Share this post


Link to post
Share on other sites


Ads by Google:

Thank you for your comments, BZBee.  There is sometimes an "Us vs. them" attitude between the doctor-diagnosed and the self-diagnosed, but really we are all in this gluten mess together, all fighting the same issues the best we can, some with labels on their foreheads and some without.  Those without (and I am one and have sometimes experienced this myself) do sometimes feel that  a diagnosis seems to endow some who have it with a greater sense of right to claim the gluten sensitivity than those who are either NCGI (i.e., tested negative) or who could not get anyone to test them before they stopped eating gluten out of desperation.  But we all have to do what is right for ourselves given our own situations and life sometimes cannot be neatly wrapped up in little packages with labels.  Respect is deserved for each suffering indvidual and as much help as we can give them.

0

Share this post


Link to post
Share on other sites

I agree too.

 

I think the only difference between celiacs and NCGI's is that celiacs have the intestinal damage... and I have no idea why that is such a defining factor when we share every other symptom and inflammatory response. My only guess is that emphasis on celiac disease comes from a focus on autoimmunity (celiacs tend to get more autoimmune diseases) but if you are just looking at how gluten affects our lives, it's about the same. There are a LOT of NCGI's who appear to have much worse and obvious symptoms than I do.

 

Gluten is just bad stuff.  :ph34r:  Too bad it that it tastes good. ;)

0

Share this post


Link to post
Share on other sites

I am one of those celiacs who got the "label" the hard way (years of painful symptoms, complications, etc.)

and even if the docs had not finally confirmed it, I would still have gone gluten-free and never looked back.

 

I do not care much for labels anyway and if gluten makes someone sick, then I believe that person is INTOLERANT of it, period....

and we are all part of one giant spectrum of gluten sensitivity. 

 

Gluten is poison to us. Same boat. Same team---- and the same solution. Don' eat it! 

 

Welcome to the forum, BzBee. :)

Cheers!

0

Share this post


Link to post
Share on other sites

The only reason I know I have an issue with gluten is by accident and how I got my "label" of celiac. I had an accidental biopsy with emergency surgery, otherwise I would still be horribly ill and not know why. I would probably also still be stuffing my face with more and more things like whole grains such as wheat in an attempt to be more more healthy only making myself more sick. Who cares what it is called? If it makes us all sick, it makes us all sick. So what if one of us called celiac because we got a diagnosis and another didn't or couldn't get a diagnosis. Frankly, I don't think it freakin matters. We're all in the same boat together. But I have also noticed that some people on both sides of the fence get super pissy and it seems completely silly to me.

0

Share this post


Link to post
Share on other sites




 But I have also noticed that some people on both sides of the fence get super pissy and it seems completely silly to me.

 

There are a few "celiac elitists" out there  I saw one on another site who made me laugh out loud. (She was like the mean girl in HS who would not let certain people into her special group) It caused the NCGIs to defend themselves and it got ugly. Why should people have to defend their conscious choices to take charge of their own health?

<_< The things people get their panties in a bunch over gives me pause.

1

Share this post


Link to post
Share on other sites

I joined a Facebook group for Celiacs in my area thinking they would be able to provide support, they know the area, the stores etc. the lady running it has been driving my crazy. Someone asked about tax returns as in Canada you can get some of the money back. I mentioned my experiences with the tax people and she kept going on about celiac this and celiac that. Which unfortunately is the way the tax people are, it's either you have celiac disease or no issue with gluten all. She seems to be unaware of the term gluten intolerant, it's all or nothing. When you mention ncgi she goes off about celiac disease.

I got mad and let rip, telling her that not everyone is (un)lucky enough to get a clear cut diagnosis, the testing is not always accurate and in our case when you have young kids seriously ill you can't wait and hope for a diagnosis you sometimes have to say screw it and go with your gut. She does not get that celiac disease and ncgi is not a black and white issue, and belittles the people that are self diagnosed.

1

Share this post


Link to post
Share on other sites

I do think it's silly that these division lines exist. We've all been there when we know there is something wrong with our body and a stranger tells you how you really feel. No one knows your body like you do. I also feel that now I do have a label everything will be contributed to Celiac Disease. Instead of trying to investigate other causes for certain symptoms. Most of the information I've received for living a gluten free lifestyle has come from gluten intolerant's, and I appreciate the help, advice, and support.

Remember the old Dr. Joke.

Patient: "dr. My arm hurts when I move it this way."

Dr.: " Then don't move it that way."

If gluten hurts you, don't eat it!

1

Share this post


Link to post
Share on other sites

I so agree with you!  (And welcome, by the way.)

 

I just read an article this morning that ended with this: "Celiac disease can be diagnosed with a simple blood test. It's possible some people have a mild intolerance to gluten, but most doctors say if you don't have celiac disease, you don't need to avoid gluten."

 

Huh??

 

I am so glad my GI is more enlightened. He is absolutely convinced I have gluten intolerance, even after all my celiac tests were negative. He even warned me about cross contamination the other day, which made me feel great that he isn't doubting the diagnosis.

0

Share this post


Link to post
Share on other sites

That's an enlightened doc , for sure!

 

If Dr. Fasano ( who in my mind is the celiac guru) says gluten sensitivity is a broad spectrum, with celiac at the extreme end--then

why would anyone in the medical community think otherwise? They are the "unenlightened", that's why.

 

There will always be nay-sayers, but to me, anyone who feels remarkably better off gluten, with symptom-resolution--is likely gluten intolerant to some degree.

Why else would it be so apparent?

IMHO

0

Share this post


Link to post
Share on other sites

Had any doctor thought to test me for celiac disease at any time in my first 43 years I would have likely tested negative - when finally diagnosed all of my antibodies were positive - yet weakly in most cases. All of my children and grands tested sero-neg with the exception of oldest that only had one positive DGP.

I don't care what we call it - gluten was destroying our bodies - so four of us now have "official" diagnosis and two remain labeled NGCI - will any of us touch gluten ever again - we would rather eat ground glass and have suggested to one GI that perhaps he should eat just a little bit of glass each day until we can measure the damage it "may" cause in his digestive system.

1

Share this post


Link to post
Share on other sites

we would rather eat ground glass and have suggested to one GI that perhaps he should eat just a little bit of glass each day until we can measure the damage it "may" cause in his digestive system.

 

Perfect analogy (and pretty much what glutening feels like for me, too)!

 

And for the OP — one thing I love about this forum is no one judges the others based on who has an official diagnosis and who doesn't. I think many of those here WITH a diagnosis remember what a long hard road it was to get one!

1

Share this post


Link to post
Share on other sites

 I think many of those here WITH a diagnosis remember what a long hard road it was to get one!

 

That's the truth, Gatita!!. 

0

Share this post


Link to post
Share on other sites

That's the truth, Gatita!!. 

 

Ditto :)

 

PS...Welcome BZBee!!!

0

Share this post


Link to post
Share on other sites

this is a great thread. I agree it does not matter to us if we have a confirmed diagnosis. we know our bodies and that's what counts.

1

Share this post


Link to post
Share on other sites

I got really lucky in finding my diagnoses also. I was getting a full work-up from a back specialist for my extreme muscle spasms. Muscle relaxers and naproxen weren't even touching it. The doc found a softball size bubble in my stomach and just so happen to suggest I might be gluten Intolerant. So I was like "what is that?" and "so what are you gonna do for my back?". I started reading about celiac symptoms and thought I'm not crazy after all about all of my random issues. GI doc confirmed Celiac with endoscopy biopsy, but I couldn't keep consuming gluten before my blood test which was negative because of that. I got all children tested and my oldest child has extreme Gluten Intolerance. Extreme meaning he tested very high for intolerance. We are still fighting his vitamin Deficiencies and Accelerated OCD from the lack iron and vitamin D. He struggles with fatigue and irritability daily. We are both on the right track to wellness now and hope for the best.

0

Share this post


Link to post
Share on other sites

My daughter has two blood tests that will only claim a "sensitivity."  Her doctor let her decide if she wanted the more invasive procedure to determine damage/inflammation.  She declined the biopsy.  He said either way she MUST eliminate all gluten.  We have. :)

 

It's family members that scoff.  Even with the two separate blood tests showing positive results. 

 

Since going gluten-free (I joined her in support -- I am a confirmed IBS sufferer--I did have that awful scope), we are MUCH healthier.  Took a couple of hard long years to get here but --  YAY.  IT WORKS!!

 

Best of health and good vibes your way.  Gluten is a mess.  Don't deal with it :)

1

Share this post


Link to post
Share on other sites

They (them researcher-heads) only confirmed that non-celiac wheat sensitivity is real last year (2012).  They think it is related more to the innate immune system.  Celiac is a response by the adaptive immune system.  They think Crohn's is also a response by the innate immune system.  So it is still an immune response, just not the same immune response.  The long term or short term ramifications of non-celiac wheat sensitivity are unknown right now.  Other than the immediate symptoms that is.  Heck, they didn't even admit it existed until last year.  So, it's not like they have any real idea what it does to people over time.  It might turn them into little green men with antennas for all we know.  Well, probably not.  But we just don't know that it is less serious than celiac disease right now.

1

Share this post


Link to post
Share on other sites

Getting diagnosed on paper isn't at all important other than one reason (you need to, to get help from a doctor). Problem is by the time you get a test you wouldn't have eaten gluten in years anyway.. why? because people tend not to eat things that make them sick in the guts.. maybe a couple times,, maybe ten years like me lol but eventually you will say enough is enough. In that case you can still have the gene test like I had and I had all the right genes, no anti bodies though as I'd been off gluten for 3 years.

 

My doctor refers to gluten as "poison" when talking to me and isn't that the truth. He would never ask me to eat it in order to show up on the anti body test because it's already dam near killing me from previous damage as it is.

1

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
      103,337
    • Total Posts
      917,378
  • Topics

  • Posts

    • 9 year Old going through testing
      Thank you everyone. I have scheduled a second opinion. He last biopsie came back and he is lactose intolerant.     
    • Gluten ataxia...?
      I was explaining that some people have other trouble that is immune related and caused by eating gluten, but doesn't effect the gut in a noticeable way. According to the paper that I quoted there are some people which have different types of brain problems but don't have inflammation when tested by a biopsy.  The author used the term "non-Celiac gluten sensitivity" to refer to anyone who has any brain trouble that can be traced to gluten but without obvious gut inflammation.  There are a lot of different possible ways gluten can effect the brain some may not be related to the gut.  It could still be an immune system problem.  Normally "non-Celiac gluten sensitivity" refers to just a food intolerance.  Withdrawal symptoms are not normal and could be indicative of an immune system response of some sort, but I don't know for sure.        
    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
    • Confused
      I have not. I'll talk to my doctor about it
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
    • SLLRunner

      Week 4 of the gluten challenge- wheat cereal every morning, regular bread every day, and wheat tortillas for my lunch wraps. Right now, body aches that seem exercise related (weight lifting and running), even though I am doing the same intensity of weight lifting and running I've always done.  Just a few more weeks until my blood test. Counting down the days.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,470
    • Most Online
      1,763

    Newest Member
    Kiwiana
    Joined