We are all so willing to take the word of others at face value, whether it be from a doctor, chiropractor, dietician, blogger, someone in gluten free food service, social media or an app. Often, we take the word of other people, instead of doing our own homework.
- Medical professionals know everything about everything and so we don’t question them.
- The blogger has done their homework/research.
- People making gluten free foods understand the laws and what gluten free means and they are following proper procedures.
- Gluten free community events like expos are always 100% safe.
- People on social media like Facebook know what they are talking about and have asked all the right questions.
- Apps that help you find products, restaurants and other gluten free things.
Let’s start with doctors and other medical professionals:
There is no way for any doctor, even those who are specialists to know everything about everything and expect them to always give you accurate information. That sentence contains a lot of absolutes!
If you have been gluten free for many years, you know the struggles patients have had with doctors! (Perhaps you have run into some who still are using old information) For many years, medical schools have been teaching the wrong information about celiac disease!
Examples of misinformation that has been taught:
- It is a childhood illness
- All children with celiac will look malnourished with extended bellies
- You outgrow celiac
- It only affects the GI tract
- Everyone with celiac is very thin
Unfortunately, many doctors continued education comes from the pharmaceutical companies as drug representatives talk to them about drugs that can help their patients. These representatives talk about different illnesses and explain how the drugs can help patients and sell the doctor on using those medications for their patients.
Celiac and gluten intolerance doesn’t have a drug, yet. Personally, I am glad for this, because many times the side-effects are worse than the original problem. (My humble opinion) However, because of there not being a drug, celiac has not been talked about and many doctors still don’t think gluten intolerance is a real condition! So, between being taught old information and not hearing any more about celiac/gluten intolerance doctors often lag behind.
My plug for support groups:
I have been a support group leader for over 10 years. Recently, I was disheartened when I was working at an expo and someone told me they would never go to a depressing support group. Is this why people shy away from support groups?! My experience both before and in being a support group leader has been very positive, helpful and educational.
A support group does the following:
- connects you with others going through the same thing
- most of the time, people living with the disease have a better understanding and better information than your doctor does
- something special happens talking to people in person- discoveries are made about things you thought you knew and didn’t know you needed to know
- information on topics
- speakers knowledgeable about issues, treatment, nutrition and more
- samples of gluten free foods and products
- a place where people understand how hard it can be at times and leave you feeling rejuvenated and able to conquer being gluten free and living with a chronic auto-immune disease
Here is how you can find a support group or start one yourself.
I still recommend doing your own homework, because even a seasoned support group leader sometimes doesn’t have accurate information. They are doing their best and trying to stay up to date, but there is so much, it is hard. We need to help one another!
Trusting Gluten Free Bloggers
Let’s face it! There is a lot of information out there, true and untrue. Wading through it can be difficult and confusing. This is probably why we want to trust others with the “facts” they have found.
Check the sources of information from those you read. Where are they getting their information? Is it coming from other bloggers as a word of mouth information, is it an opinion or are there legitimate sources?
I’m not saying that it is bad for bloggers to cite one another’s posts or that it isn’t true if it is cited from one place over another. What I am saying is that you need to use your best judgment from everything you read. Be careful about taking anyone’s word as absolute truth.
I believe most bloggers are trying to give accurate, well thought out, good information that will help others. We are all human and make mistakes or misunderstand things. So, keep that in mind.
Trusting Gluten Free Events
Yes, there is an expectation to trust that when going to a gluten free event, like an expo, that everything at that expo is going to be safe. Having put on events like an expo and participating as a vendor I know how strict the rules are. However, even with the strict rules, sometimes one vendor will slip through that shouldn’t be at the event.
If that rogue vendor continues to show up at events I would question organizers and their motives for doing such events. It’s a one shot deal, for the vendor, unless serious steps are taken to rectify the problems.
My Recent Expo Experience with a Rogue Vendor
I was running an information/education booth at our local expo, last weekend. At the end, as I was cleaning up, another vendor approached me (to tell you the truth), he was fairly rude from the get-go! He wanted to know what I was selling and when I said I was selling nothing, he pressed me and had a hard time letting it go, because I had to be selling something! (My booth is non-profit- information and education!)
Next, he tried to get me to agree that there are different strains of wheat and that some of them are more safe than others. Nope! Any wheat in any form should NOT be ingested by those with celiac or gluten intolerance! He did not like my answers and became more aggressive. It became clear in talking to him that he has no understanding of celiac or gluten intolerance. (Since the expo, I have checked out his web-site and he believes that yeast (quick rising) has caused gluten intolerance. That is a new one I haven’t heard before!)
Another alarming thing he said, is that gluten free isn’t cut and dry, but rather a LOT of gray area. Yikes! The gluten free regulations (FDA) are pretty cut and dry without gray areas! (More about the labeling laws) I warned him that other bakers have been prosecuted for selling products that are marked gluten free, but are not. He said he makes no gluten free claim, which isn’t true because it is all over his web-site. Perhaps he was talking about his other breads? I don’t know since he talked in circles.
What this quick homework session reveled
It became clear that he is a danger to the gluten free community. He only has one truly gluten free product and that is sourdough. However, his kitchen processes make that debatable. (I wouldn’t even sample it, let alone eat it!) I had someone tell me, he told her, at the expo, any gluten or gluten contamination bakes out during his process. (Here we go again! Someone who has a magic oven!)
Talk to the vendors, talk to companies, check out their websites and ask questions. You never know what someone’s agenda really is and asking questions helps to ferret out those that are just on the band wagon.
What I don’t understand is why someone would be willing to make people horribly sick and cause damage to them just to make a buck!
Actually, I think I do know why, they don’t believe it is real. The disease, the intolerance, the symptoms, and the effects of eating gluten.
Trusting Social Media sites and pages
Are we really so quick to take the word of people on a page? We know nothing about them.
- Do they have celiac or gluten intolerance or are they gf for other reasons, which may not have anything to do with gluten free health issues?
- Did they not get sick because they are doing it for other health reasons?
- Inversely, was this just one bad experience? (It does happen, even to good places.)
- What questions did they ask, do they know the right questions to ask?
- Who did they talk to? I have had experiences where they have changed our server to someone who knows gluten free, instead of the new staff member.
- Is this person overly or under concerned about answers. I might feel differently asking the same questions.
There are a lot of different apps and devices that can help with finding gluten free foods and products. They are so helpful. However, are we relying on them too much?!
This is a great tool, but it does have its draw backs. The Nima Sensor can give false negatives and false positives. It also may not be helpful in detecting cross contact. Though it can give a little more of a sense of security when eating out. However, that doesn’t mean you should stop asking questions. Always ask questions and make sure your server and/or chef understands that you are gluten free and what that means.
Gluten free apps
These apps can be helpful in finding products and restaurants. Reviews are by those who use the apps and comment. If you solely take the word from comments on these apps you will likely be led astray.
I love and frequently use Find Me Gluten Free! We have found great places using this app, especially when we are on vacation! However, we had a horrible experience following the advice to go to HuHot. (And it’s update here. No more has been done about them, it is disappointing.)
Everyone said HuHot was a great place to go and safely gluten free. However, as we asked questions I was confused by their menu:
“ALL LISTED SAUCES ARE GLUTEN FREE AND MSG FREE.
Wheat has been processed to meet FDA standards for Gluten Free foods.”
What process? I quickly discovered they use hydrolyzed soy sauce, which is NOT considered safe! In asking other questions we became more and more leery about eating there and left. This led me to doing more homework about HuHot, the FDA laws and contacting the Gluten Free Watchdog.
Do Your Own Homework!
Your health is in your hands!
- Ask your own questions, do some research, get to know the ins and outs of gluten free and the conditions related to why people are gluten free.
- Join a support group
- Know how to safely eat out and what questions to ask. Here is a great article on how to dine out safely.
- Learn about shared kitchen safety. (The article is about roommates, but the same principles apply to other kitchens.) It takes a puff of flour 3 hours to settle, but gluten can linger in the air for as long as 24 hours.
- Don’t rely solely on others opinions for your information.
- Use your own intuition and knowledge to make the best choices for you and your health.