7 Worst Mistakes People Make With Celiac Disease & Gluten Sensitivity
MISTAKE 1: Listening to the wrong person for advice
Gluten is a hot topic in the world of food and health and everyone wants in. As wonderful as that height in awareness is, they are not doing their homework properly. Medical doctors and common bloggers alike, they read an article or two on the internet and then begin to re-tweet, re-post, re-spread the bad information they read.
Social media makes this “misinformation wildfire syndrome†all too easy. Within seconds of someone tweeting something it can be spread to millions of people in tens of modalities. The most dangerous part of this is that when someone seeking information keeps seeing the same information over and over (including by medical doctors posting) then they naturally assume the information is accurate. Most of the time it is not!
MISTAKE 2: Thinking that Celiac Disease and gluten sensitivity are the same
People who have Celiac Disease are intolerant to gluten but you don’t necessarily have to have Celiac Disease to be gluten sensitive. The medical community now even has a separate term for it: NCGS (Non-Celiac Gluten Sensitivity). Both lead to severe health issues and higher rates of mortality.
MISTAKE 3: Comparing Celiac Disease/Gluten Sensitivity to common allergies
Celiac Disease is not like dairy or shellfish intolerance. Gluten reaction doesn’t mean your lips will swell for a few hours after ingesting gluten or getting a stomach cramp for an hour; it causes a serious degeneration of your life while on earth and that time will be shorter than it naturally would be if gluten wasn’t involved.
MISTAKE 4: Thinking that it is a disease that appears overnight
Celiac Disease remains in silent stage for years (that’s where you want to keep it forever!) You don’t “get†Celiac Disease or NCGS the way you get poisoned with salmonella. Gluten is there, lingering, festering, fermenting, and killing you slowly. AND can be stopped!
MISTAKE 5: Accepting that “gluten-free†on labels actually means gluten free
“Certified gluten-free†doesn’t necessarily mean the food is gluten-free. The same way “fat-free†doesn’t actually mean fat free most of the time. Clever lawyers, massive legal loopholes, and mega food manufacturers tied in with government is what makes this possible. And it is the reason Celiacs often say “but I am eating gluten free, why don’t I feel well, why am I not getting better?â€
MISTAKE 6: Comparing symptoms to other Celiacs or online lists and ruling it out
Your reaction will be as unique as your fingerprint. For some it hits their glandular system and they have thyroid issues and are dealing with obesity – cramps & bloating nowhere in sight. It’s different for everyone. Don’t make that common mistake of going online and ruling out Celiac Disease or Non-Celiac Gluten Sensitivity just because the symptoms you are suffering are different from what you find online. You don’t want to wait until your food issue graduates to cancer or MS or a myriad of other diseases that are far worse.
MISTAKE 7: Trusting test results that didn’t involve DNA
If you have tested negative via blood test, know that it’s not accurate the way genetic testing is. The average Celiac goes 11 years undiagnosed or misdiagnosed. You want genetic testing for Celiac Disease and specific anti-body testing (with a doctor who understands gluten well) for Non-Celiac Gluten Sensitivity.
With the right information, you can prevent becoming the next gluten victim
I find it Ironic that this article goes against it’s own first rule by giving inaccurate info. Why would genetic DNA testing be so accurate? 30 percent of the population carries the gene yet only 1 percent have Celiac, is this article claiming that if you have the gene you have Celiac? Also the new blood tests (ttg, and DGP peptides) are very accurate and sensitive and will only provide false negatives 1-2 percent of the time as stated in one of the most credible Celiac research institutions: http://www.cureceliacdisease.org/archives/faq/in-blood-tests-are-false-positives-less-common-than-false-negatives
Hmm, interesting that you’ve mentioned Mistake #5. I would have fallen into the trap of believing “Gluten-free” is really gluten free.
Thank you for Mistake #5 and #6. That was me. First, I didn’t have the same symptoms as my diagnosed father, so I never thought to get tested. It took me over 20 years to get diagnosed. And #5 – I was so, so sick on GF food it was unreal. Took me a long time to figure out that the gluten legally allowed in my GF food was too much for me!
Can undiagnoised celiac lead to ms?
The best testing is done at Entero Lab (www.enterlab.com) in Dallas. It is a stool test, not a blood test. (Blood tests are rarely accurate.) Great article! I am co-author of The Gluten Connection, whose main author was Dr Shari Lieberman, who passed away two years ago.
Linda, get out of here with that crap. Entero lab is notorious for being sketchy. They don’t allow any peer reviews of any of their “research studies” and always claim that they have this great, extremely accurate testing that only they could find. Enero lab is a business, like any other sales people they will lie and manipulate the truth in whatever way they can to get the sale. Wouldn’t be surprised if Linda is in someway tied into the commission for testing sales. Funny how once again, rule number 1 is violated right under its nose.
Yeah for saying that “gluten free” doesn’t mean gluten free. I am one who reacts to “gluten free” food and couldn’t understand why. We need more people making that clear so that people who are more sensitive can feel better too.
Can I give a website where such things are discussed? Despite being a .com, there is no paid advertising or anything sold on the site.
Glutenzap.com/forum
Please delete that part if you don’t want to include it.
Thank you for the “in the nutshell” overview. I agree 100% with your statements. So many people, medical and non-medical, just don’t understand exactly what celiac disease is or gluten sensitivity. They are both quite different, but both do damage, bad damage. I am stupefied at the amount of mis-information you there. As well, labels need to be read all the way through, no matter what, even when they say “gluten free”. My mother, myself, and my granddaughters have celiac disease, and each of us had a few of the same symptoms, but way more that were not the same. Each individual is different as you said, and I appreciate you getting this out. Keep up the good work, and thank you for being such a great advocate for what can be a devastating disease.
Fondly,
Cecily Muller
S. Windham, ME
Thanks for this Jaqui – I thought I knew a lot about celiac & gluten sensitivity.