Gluten Intolerance May Not Exist? Thoughts?

[SiandAshs Mom]

Sorry if this was posted already somewhere else - I couldn't find anything... I just came across this article Open Original Shared Link  

 

What are your thoughts on this? I tested negative on the attg iga blood test (the only blood test available here). My doctors don't think gluten is an issue. I went on a gluten free diet anyway and I feel better. My GI issues have almost completely resolved, and issues I have been having with my monthly cycle have improved as well. My nails have always split and broken off and now they are super long and strong. I guess I'm just really confused - is this really all in my head? I know what we believe and think have a great power over us physically but really? Nocebo effect? It's all psychological? What does the celiac/NCGI community think of this? Thanks!

[BlessedMommy]

I think that no matter what scientific experts say, if a food makes you sick or causes you health issues, you shouldn't eat it.

 

Plus, celiac testing isn't perfect, there are a number of seronegative celiacs.

 

The study that was done that claimed NCGI didn't exist had only 37 people in it. That's hardly enough people to draw any sweeping conclusions about the existence or non-existence of a medical condition. Plus, the study was made up of people who were willing to be rotated between gluten and gluten free diets. There's no way on earth that I would sign up for a study like that, knowing that I would be fed gluten.

 

In addition, people often take days to recover from being glutened, so who knows if the study participants were reacting to their current or prior diet?

[RMJ]

Some researchers now suggest that people diagnosed with NCGI aren't reacting to the gluten, but are reacting to another component of the wheat. If someone is on a gluten free diet, they are also basically on a wheat free diet. But in the study you reference, it looks like purified gluten was added to the diet. That study would not detect a reaction to another component of the wheat.

[BoJonJovi]

Some people test clear on blood tests and do not pass the biopsy and vice versa. Some people test clear then develop Celiac.

I was asymptomatic or so I thought. I did not have loose stools or stomach problems. Actually i always thought I had a stomach of iron. I was diagnosed at 53 and now that I am gluten-free I realize I have had it all my life. Things do not seem abnormal if you have had them all your life and is not like I ever looked at other people stools.

I have been gluten free for three years and my health is still jacked up from Celiac. Celiac shattered my health in so many ways, butI never really had gastro issues that would raise suspision. 

[hayley3]

That's interesting BoJon...what issues can you see now that were actually celiac symptoms?

 

I have bloating and constipation and gerd that is attributed to SIBO, sometimes nausea. 

 

Cheryl

[Selfmom5]

Still haven't done he testing to see if I have celiac.... But I know that the reaction I have to "gluten foods" is not just an ibs reaction .. I have had ibs in the past and it would happen with things that didn't have gluten in them as well. I don't agree with it

[ravenra]

I fall into the NCGI camp, with negative blood work and normal endoscopes. I have a boatload of autoimmune issues and react to even small amounts of gluten with predictable symptoms. I've read a few studies lately saying gluten intolerance doesn't exist, citing FODMAPS and other food sensitivities as the likely cause. In my personal experience I think that's bunk!

I agree with others, if something makes you ill- gluten or otherwise- avoid it! Do look into fodmaps or fructmal though. It is a legit possibly.

[hayley3]

After some reading, SIBO (IBS) can cause osteoporosis, malabsorption and autoimmune disorders, just like celiac disease, it's just that the list of items to avoid is much larger and they say there's a cure but the cure is not really a cure at all.   So with SIBO you still can't eat anything that has gluten in it.  The only difference between SIBO and Celiac is celiac has a known cause and cure.

[nvsmom]

After some reading, SIBO (IBS) can cause osteoporosis, malabsorption and autoimmune disorders, just like celiac disease, it's just that the list of items to avoid is much larger and they say there's a cure but the cure is not really a cure at all.   So with SIBO you still can't eat anything that has gluten in it.  The only difference between SIBO and Celiac is celiac has a known cause and cure.

I think SIBO and IBS are different conditions, although SIBO does produce IBS like symptoms.

 

SIBO is a small intestinal bacterial overgrowth that is diagnosed with the hydrogen breath test.  Diet changes and a round of antibiotics are often enough to cure this but sometimes a chronic condition exists if there is a problem in the intestine which causes it to reoccur if the problem is not addressed.  Probiotics helps too.... This is a cureable sickness and gluten ingestion should not affect it at all.

 

IBS is irritable bowl syndrome. It is a collection of intestinal symptoms that are about the same as the intestinal symptoms that many celiacs experience.  I personally think that it's a label that doctors apply to symptoms when they can't figure out the cause - someone around here called it a doctor acronym for"I Be Stumped". 

 

IBS is oftem made worse by food intolerances like gluten or milk (lactose). A low FODMOP has been found to help many with IBS.... which I think is what you meant but you typed SIBO instead of IBS.   Too many acronyms, right!  LOL

[hayley3]

"I Be Stumped!"  haha Nicole.  Too funny!

Well I was diagnosed with IBS, but it turns out for me it is SIBO.  I was taken out of the IBS category when they did a intestinal biopsy and found out I did actually have something they could quantify...SIBO.   So they are not stumped any longer when they find out you have SIBO, I meant.

 

SIBO is not curable, btw.  It may go away after the antibiotics, but sadly it normally returns, especially if you've had an appendectomy, like me.

 

Cheryl

[nvsmom]

"I Be Stumped!"  haha Nicole.  Too funny!

Well I was diagnosed with IBS, but it turns out for me it is SIBO.  I was taken out of the IBS category when they did a intestinal biopsy and found out I did actually have something they could quantify...SIBO.   So they are not stumped any longer when they find out you have SIBO, I meant.

 

SIBO is not curable, btw.  It may go away after the antibiotics, but sadly it normally returns, especially if you've had an appendectomy, like me.

 

Cheryl

 

I can't take credit for "I Be Stumped", I wish I could remember who said it.   LOL

 

Don't you wish that each disease had it's own separate symptom?  Those overlapping symptoms (like in celiac disease, SIBO, IBS, etc) make it tough to figure out what is what.

 

I didn't realize SIBO was always incurable.  I thought in some it could be gone for good but in others with a bowel (shape) problem, it could be chronic problem.... Not good.  

[sweetsailing]

I agree with blessedmommy, if it doesn't make you feel good, don't eat it.  I will likely never know definitively whether or not I have celiac disease however, I live as though I do, as there are enough factors for me that lean in that direction that it's rather unthinkable to eat gluten. 

 

I do have 2 copies of the DQ 2 gene (homozygous DQ2), which puts me in a high risk category for celiac disease.  Had horrible GI issues and abdominal pain (resulting in 3 hospitalizations and exploratory surgery - yes, it was that bad), have osteopenia, had elevated liver enzymes, low Vit D, had an ovarian vein blood clot (can be a manifestation of celiac disease and generally is otherwise quite rare), horrible muscle, tendon and joint issues (severely tore at least 6 different muscles - doing very little to cause this), it was as if my body was very malnurioused and was breaking down all my tissue to sustain itself. 

 

Had negative blood work - although I tend to discount this because I was gluten free at the time it was done and had been gluten free sporadiacly in the 6 months leading up to the testing.

 

Had an endoscopy with biopsies - did 3 biopsies, only 1 was from the small intestine.  Not sure about this either since the number of biopsies was limited and in retrospect, I am not sure that I trust the doctors I was seeing to process the specimens correctly to accurately test for celiac.  This was also done very early on in my illness phase and I wasn't willing to go back to eating gluten later to redo this test. 

 

I have now been gluten free for 10 months and all my GI symptoms have vanished.  Still dealing with some of my muscle, tendon and joint issues however, I am now building myself up instead of things beling torn down, it's just taking longer that I want it to.

 

So, celiac vs gluten intolerance??  I really don't care either way...I'm gluten free and living life again