Another Question...

[still..hopeful]

What is the difference between celiac disease and being gluten intolerant?

[aklap]

What is the difference between celiac disease and being gluten intolerant?

To some - nothing. To others - everything. There is a saying..."All celiac disease is gluten intolerance, but not all gluten intolerance is celiac disease."

There are so many terms and concepts that get used when it comes to this, it's as mind bending as the diet itself. ;)

There are some that feel Gluten Intolerance [I prefer the term Gluten Sensitivity] is a spectrum type disorder. There can be many gluten related issues that fall under this umbrella - Celiac Disease being one them. Dr. Hadjivassiliou, a rather well known neurologist in the Gluten Sensitivity world states:

http://jnnp.bmj.com/cgi/eletters/76/11/1601
Although the definition of gluten sensitivity remains controversial for some, published literature supports the contention that gluten sensitivity represents a diverse spectrum of which coeliac disease is just one part.

Medically, the gold standard for diagnosing Celiac Disease is damage villi. Most doctors will only diagnose CD if there is villi damage. No villi damage = no Celiac Disease.

That's perfectly acceptable, however...there are many individuals [your's truly included], that have had blood work & biopsies come back negative and were told they didn't have CD. But yet, they still had health issues. Issues that the medical community could not answer. In my case [and in many people I've encountered], removing gluten [and other offending foods] was the answer to their health problems - even though we were told we didn't not have CD - or that removing gluten might help. Because of this many people like myself fall thru the cracks. They go on suffering because the doctors knowledge is out of date and antiquated. Luckily I was only sick for 1.5 years before I figure out [by my own research] that gluten was at the root of my problems.

This brings us to Non Celiac Gluten Sensitivity (NCGS). Some say it exists, others have no clue about it. Generally NCGS deals with many of the symptoms of CD, but fall short of the current definition of CD [no villi damage or inconclusive blood work].

Gluten Sensitivity: A Gastro's Personal Journey Down the Gluten Rabbit Hole (http://www.celiac.com/st_prod.html?p_prodid=1417&p_catid=&sid=91hH9H1jiMYsE95-48107483107.80) by Dr. Scot Lewey. More info on NCGS (http://thefooddoc.blogspot.com/2007/07/gluten-sensitivity-confirmed-by.html)

FoodIntol.com Intolerance vs CD (http://www.foodintol.com/celiac.asp)
Gluten Intolerance Group info on Gluten Sensitivity vs Celiac Disease (http://www.gluten.net/downloads/print/glutenintoleranceflat.pdf)
Gluten Intolerance Group info on Celiac Disease (http://gluten.net/downloads/print/celiacdiseaseflat.pdf)

This just scratches the surface, I hope this helps. It probably raises more questions than answers... ;)

The bottom line in all of this...if you have unexplained symptoms (http://forums.glutenfree.com/viewtopic.php?p=143)...the doctors are scratching their heads about what's causing them...look to gluten or other foods as the possible cause. There's a good chance you might have found your answer!

[still..hopeful]

You are a great resource!

[BrendaK]

That's perfectly acceptable, however...there are many individuals [your's truly included], that have had blood work & biopsies come back negative and were told they didn't have CD. But yet, they still had health issues. Issues that the medical community could not answer. In my case [and in many people I've encountered], removing gluten [and other offending foods] was the answer to their health problems - even though we were told we didn't not have CD - or that removing gluten might help. Because of this many people like myself fall thru the cracks. They go on suffering because the doctors knowledge is out of date and antiquated. Luckily I was only sick for 1.5 years before I figure out [by my own research] that gluten was at the root of my problems.


I am also one of those people who "fell through the cracks." I had severe abdominal issues that began over 3 years ago. Since my mom and sister both have biopsy proven celiac disease, my GI doctor did the antibody test and an endoscopy which were both negative. Fast forward to last March -- my symptoms were so severe, my doctor could not find anything wrong with me, so I decided to go gluten free on my own. And my symptoms were "magically" cured within 3-5 days. I stayed gluten free for 3 months then challenged the diet by adding gluten back in and was very very ill within 48 hours. I have been GF ever since. And I have found I'm pretty sensitive -- if I accidentally have gluten, I get pretty sick.

I think celiac is sometimes much harder to diagnose that what the doctors think. It was very interesting that I developed type 1 diabetes about the same time I went gluten free. Personally I think that I was genetically predisposed and for some reason my immune system just went crazy.

My endo thinks that I do have celiac, but my biopsy was done too early in the process. There was minimal damage at the time, so it wasn't caught. It probably would have been caught later, but my GI doctor refused to do another biopsy.

So for now and probably forever I'm gluten free. But beware to those people who fall through the cracks :cwds: