Small Amounts Of Gluten Safe?

[DQ1Squared]

Hi everyone…I had an appointment with a gastro doc this morning and would like your thoughts on a comment he made.

This doctor accepted my Enterolab results indicating gluten sensitivity but said that I did not need to worry about eating small amounts of gluten. He likened it to someone who is lactose intolerant but would not really be harmed by eating the occasional bowl of ice cream. He emphasized the distinction between the disease state (celiac) and gluten sensitivity and said that although gluten sensitivity will make you feel lousy, it will not result in malignancies, osteoporosis, etc., that characterize the disease state so no worries about eating a little gluten occasionally.

It seems to me that his advice is off base. Am I being unnecessarily paranoid about gluten, or have other "merely gluten sensitive" types found that they need to be as careful about their diet as biopsy dx'ed celiacs?

Thanks,

DQ1Squared

[tarnalberry]

Honestly, there is not enough research on gluten intolerance without a diagnosis of celiac disease to really say. Mostly, that's because there isn't a good understanding of "gluten intolerance without celiac disease". You may be seeing results that only indicate gluten intolerance without celiac disease because not enough damage has been done yet to show celiac disease. But, in theory, you could have a standard food intolerance to gluten that has nothing to do with the autoimmune process of celiac disease. The problem is, you can't know. Medical science doesn't understand this stuff at all, and they certainly can't test for it yet.

If you've got antibodies, you're reacting. And to be on the safe side, you should just completely avoid it - even the crumbs - because while it's not impossible that it's a more standard IgG reaction that is not auto-immune, you can't know whether that's the case or not, and it's DEFINITELY a place to play safe rather than sorry.

[lovegrov]

Honestly, I don't think anybody can 100 percent tell you one way or the other. Some think "gluten sensitivity" will almost always or always lead to celiac if you don't stop eating gluten, and others don't. I would advise the cautious approach.

richard

[Matilda]

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[Nantzie]

Hi!

I've got DQ1 also. I'm just learning about all of this too. Someone on this board posted this link about gluten sensitivity as a neurological illness, which it seems is more of a problem with DQ1, at least that is what I've noticed on this board.

Open Original Shared Link

I also see that you have a positive tTG though. From what I've read, that's a test that specifically indicates intestinal damage. Have you had a biopsy?

Nancy

[tarnalberry]

  Matilda said:

If your Enterolab results show anti-tTG abs then you have antibodies against yourself, not just against foods, which means auto-immune disease.

This is a *very* good point. I made an assumption in my post, when I said antibodies, that was referring to anti-gliandin antibodies. Those tell you that your immune system is reacting to the wheat protein. They don't say, themselves, anything definitive about celiac disease intestinal damage. tTg antibodies, on the other hand, *are* more directly involved with the intestinal damage - it's the anti-tissue transglutimase antibody, and does indicate that the reaction is heading towards something that will cause damage.

I'm inclined, based on the research I've read, to believe that *only* having a positive antigliandin IgG does not mean that you will *inevitably* develop celiac disease damage (gastrointestinal or otherwise, though you may experience symptoms you don't like), but I'm less inclined to believe that in the case of a positive tTg result. (Though, again, there isn't a lot of research to explain the crooks and cranies of the testing result variations.)

[VydorScope]

Hmm intresting... are y'all saying that if one test postive on the IgG scale, but negiative on the IgA scale its not truly celiac disease just gluten intolerence?

[aikiducky]

  VydorScope said:

Hmm intresting... are y'all saying that if one test postive on the IgG scale, but negiative on the IgA scale its not truly celiac disease just gluten intolerence?

Not necessarily. It could also mean that there isn't enough damage to show in the blood yet. Also, if one is IGA deficient, then that wouldn't show even if there was damage.

I just don't understand why on earth I'd ever want to eat something that made me feel lousy. For me that is such a no-brainer.

Pauliina

[Guest nini]

why on earth would you want to eat something that makes you feel like crap???? just my opinion but Gluten Intolerance is the bodies way of telling you that Gluten is poison, Celiac is confirmed damage, that is the only difference... Listen to your body, it's telliing you to avoid it even in small minute amounts.

[VydorScope]

  nini said:

why on earth would you want to eat something that makes you feel like crap???? just my opinion but Gluten Intolerance is the bodies way of telling you that Gluten is poison, Celiac is confirmed damage, that is the only difference... Listen to your body, it's telliing you to avoid it even in small minute amounts.

OooOoo welll that depends.. I mean whats your favorite food? Choloclate? Coffee? Everyone has some foods... I can do gluten-free... but if I foudn out I was alergic to SUNMIAD RASINS, dunno if I could handle that

[Guest nini]

well now, see... my favorite food was Krispy Kreme donuts... and I miss them terribly and I have not found a suitable substitute that is even close... but... I know even one little bite of a Krispy Kreme donut would make me sick for weeks so, I will do without. Yes I miss them, yes I mourn for them, but I will not willingly torture my poor body just for a moments pleasure!

[VydorScope]

  aikiducky said:

Not necessarily. It could also mean that there isn't enough damage to show in the blood yet. Also, if one is IGA deficient, then that wouldn't show even if there was damage.

Pauliina

Okay good, thats what I thought, just making sure

[tarnalberry]

  VydorScope said:

Hmm intresting... are y'all saying that if one test postive on the IgG scale, but negiative on the IgA scale its not truly celiac disease just gluten intolerence?

That's not what I was saying...

IgG and IgA are both different classes of antibodies. My point, in my correction, was that I would consider it important to consider what the antibody was *for*, regardless of the class of antibody. Anti-gliandin antibodies, be it of the IgA class or IgG, are antibodies against GLIANDIN, which is the wheat protein you consume. Anti-tissue transglutimase antibodies, which I believe are of the IgG class, are against tissue transglutimase, which is something your body produces. So, in the case of anti-gliandin antibodies, your body is attacking a foreign substance that you are introducing (much like IgE allergies to pollen). In the case of anti-tissue transglutimase antibodies, your body is attacking a molecule you create yourself - and is part of the internal process of managing your intestines, so it's attacking yourself (which is what an autoimmune disease is).

That's why I would pay attention to which tests are positive in trying to figure out the possibility between potential damage and an intolerance that won't cause damage. But, as has been stated, we don't know that there does or does not exist a gluten intolerance that does not involve intestinal damage. It's a big grey area with no actual answer at the moment, so it's better to be conservative on the issue until there is at least *some* evidence.

[DQ1Squared]

Just to clarify, I am not advocating intentional cheating on the gluten-free diet. It would obviously be a relief to know that if one is “only” gluten sensitive, it wouldn’t be so imperative to worry about gluten contamination from seasonings or a stray crouton crumb in a restaurant situation; however, that doesn’t square with my own experience and judging from the response here, other non-celiac gluten sensitive people are probably in the same boat. I was a bit floored by this gastroenterologist since he is supposedly well informed about celiac disease/gluten sensitivity and it does seem that “better safe than sorry” would have been a more sensible approach especially considering the tTG factor. Clearly the wiser path is to disregard this doctor’s advice and maintain a zero-tolerance gluten/casein stance.

Nantzie, to answer your question, I have not had a biopsy. I had negative bloodwork and was scheduled for an endo, but got too sick to continue the gluten challenge so I canceled the endoscopy and opted for Enterolab’s test instead. Regarding tTG, I asked this doctor yesterday whether tTG is specific for celiac disease/intestinal damage and he said that sometimes it is, and sometimes it isn't. That contradicts just about everything I've read about tTG!

You folks are so knowledgeable. I am still sorting out pieces of the celiac disease/gluten sensitivity puzzle and this forum has been extremely helpful. Thanks.

DQ1Squared

[Nantzie]

Yea, I'm really, REALLY tempted to do the same thing - skipping the endo and getting the rest of the full panel from Enterolab.

I also did a websearch on DQB1*0602 and found a lot of interesting things about it, including that it actually helps protect against diabetes. Who'da thought?

Here's the search page -

Open Original Shared Link

Nancy

[DQ1Squared]

Nantzie, thanks for the links. In Googling around I noticed that the DQB1*0602 gene is also associated with MS—interesting.

If you are not yet gluten-free think very carefully before skipping the biopsy. Although in my opinion Enterolab testing is reliable, I still occasionally wonder if I should have stuck it out with the gluten challenge and gone through with the biopsy. Of course, that’s much easier to say now that I’m feeling better! During the challenge I wondered if I was doing some kind of permanent damage. Good luck with your decision.

DQ1Squared