Celiac Vs. Gluten Intolerance

[BZBee]

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.

[mushroom]

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.

[nvsmom]

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.    Too bad it that it tastes good.

[IrishHeart]

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!

[Adalaide]

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.

[IrishHeart]

 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.

[stanleymonkey]

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.

[BZBee]

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!

[gatita]

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.

[IrishHeart]

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

[GottaSki]

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.

[gatita]

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!

[IrishHeart]

 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!!. 

[GottaSki]

That's the truth, Gatita!!. 

 

Ditto

 

PS...Welcome BZBee!!!

[julissa]

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.

[GFceliacgirl]

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.

[beefree11]

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

[GFinDC]

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.

[foam]

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.