Gluten-Free Newbie ... Need Assistance

[BlessedChef]

Hello - I am a gluten-free newbie and been almost "perfectly" gluten free since end of April 2010. I love my Braum's breakfast bagel, but have discovered that I have to go completely gluten-free. My system reacted BIG time!!

I went gluten-free because my husband's doctor was trying to find a "cure" or something to possibly help with his Peripheral Neuropathy. He's bad at being gluten-free, it's a bad thing when you spend a lot of time on the road and most fast food restaurants are not gluten-free. I make his lunch, but those snack urges are hard to fight!

I now cannot eat gluten, which is kind of funny to find this out now at the age of 44. It's strange to have this happen now and not earlier in life have it bother me. I do not know if I can be tested because I do not have a lot of gluten in my system right now.

I have been told taking an enzyme would help if you have eaten gluten. I was given a newsletter that had the Mayo Clinic talking about Gluten Sensitity Formula.

Can I be tested still and has anyone heard of this enzyme?

THANK YOU!!!

[WheatChef]

If you've still been eating a bagel each morning you can still definitely be tested.

As far as enzymes go, I don't think there's much evidence of those enzyme things working at all for gluten problems.

[Takala]

Hello,

As you are discovering, if you are gluten intolerant or celiac, you can't do this incompletely.

There are gluten free bagels. If you chose to use or bake your own gluten free breads, you will need a gluten free dedicated toaster to cook them in.

The tests are not absolutely definitive. Some people still have a real gluten problem but for odd reasons don't have a positive blood test. I am one of them, I finally had my brain scanned and they found brain lesions, aka "bright spots," which the neurologist still insisted didn't mean anything re celiac or gluten, I concluded after getting the test results and having to fight for an appointment for followup, she was an idiot and self diagnosed based on all the other evidence/symptoms/research, I don't recommend this but people do what they have to do. I haven't been genetically tested but I fall into all the right ethnic groups to be a very likely carrier, about a third of the population carries the HLA DQ genes now that are associated with gluten intolerance or celiac, although only a small percentage get triggered into developing the disease. It is thought that now the incidence can be as high as 1 in 100 people getting it.

Many American insurances want a positive blood test for the antibodies to gluten proteins, before they will do a biopsy of the lining of the small intestine, and they will try to insist you can't be diagnosed without one. Some people get a rash called DH. Biopsy of that can also be a diagnosis. Guess what. I had a small and persistent patch of this for years, wrote it down on many prescreening surveys, and NOBODY thought to do this, either.

It is not unusual to go for a very long time before either being diagnosed or figuring it out after developing all the other side effects and related diseases.

Re the "gluten sensitivity formula" I found the newsletter huckstering this enzyme formula on the internet and it is a bunch of hooey. But it was written cleverly. Be cautious of dot com websites that are commercial in nature.

I can go thru and debunk each claim:

___________

"Mayo Clinic says celiac four times more common than in the 1950's." No. Yes, more common, no, wrong math.

"They have gluten intolerance, not an immune disease." NO. big mistake there.

"Misinformation about gluten can make this nearly impossible." Yes, and this totalhealthbreakthrough site is contributing.

"Some gluten myths are from so called experts." Oh, really ? Experience trumps theory everytime.

"The next time you

[Skylark]

I agree with Takala DPP-IV fad is a dangerous piece of psuedoscience.

Alvine Pharmaceuticals is testing an enzyme-based drug, but DPP-IV is not one of the enzymes, and the drug is too early in clinical trials to get an idea of whether it will work.

You need to get tested, then find a substitute for your breakfast bagels. The Glutino ones are pretty good. I like the poppyseed.

[BlessedChef]

WOW!!!! THANK YOU BOTH!

I am so new to all of this and APPRECIATE all of this information.... I needed this because I am so new to researching anything and everything I can about Gluten-Free lifestyle and if there are any type of "enzymes" that would help with the pain of the accidental gluten in my system.

As many of you probably have experienced, it's a horrible feeling!

I google search and read all of the forums and blogs I can about Celiac and non-Celiac Gluten Sensitity/Intolerance I can. I have checked out various books from the library also, plus purchased two that sparked my interest.

THANK YOU AGAIN!!!

[Mari]

Hi BC,

The blood tests are not always positive - a more sensitive test is the fecal antibody tests offered at Enterolab.com. And while looking at their informative website look at the genetic DNA marker tests which you do not have to be glutened to have. If you choose to have blood tests be sure they test for anti-gliadin antibodies and tissue transglutaminase.

[Skylark]

Hi BC,

The blood tests are not always positive - a more sensitive test is the fecal antibody tests offered at Enterolab.com. And while looking at their informative website look at the genetic DNA marker tests which you do not have to be glutened to have. If you choose to have blood tests be sure they test for anti-gliadin antibodies and tissue transglutaminase.

If you feel like you need a piece of paper, Enterolab will almost certainly find something. Can't say I'm convinced it means much. I always advise folks who have already figured out they can't eat gluten to listen to their bodies (that's the ultimate test anyway) and spend the $350 on new cutting boards, a new toaster, a nice rice cooker, gluten-free cookbooks, and some gluten-free goodies instead.