Tuesday, September 20, 2016

It is Time to Rebrand Myself

Rebranding Myself as Super Sensitive Celiac
Rebranding Myself
I've decided that it's time to rebrand myself.

Although, I've been thinking about rebranding for awhile now, since I'm no longer chasing after weight-loss diets, such as low carb, and focusing more on just staying away from as much gluten as possible, it hit me head-on a couple of weeks ago:

It's actually time to do this.

It's time to rebrand.

Triggering Event


The triggering event for me was when I started reacting to the Mission Gluten-Free Flour Tortillas that I recently reviewed on this blog.

They are not certified to be gluten free, which means that legally they can contain up to 20 ppm of gluten, but since I can eat their corn tortillas without problem, I assumed that Mission Foods was taking similar precautions.

Maybe they are. I honestly don't know.

What I do know is that I had a full-blown gluten reaction to them a couple of weeks ago, so bad that I found myself living in the bathroom and popping Kirkland Signature Anti-Diarrheal caplets for several days.

At first, I thought it was just me.

I've reached a point in my life where I've finally accepted my lactose intolerance and have been slowly finding alternatives for the liquid milk in our diet. Being a super-sensitive celiac also makes it extremely difficult to find safe gluten-free products.

I know that intellectually.

However, after watching hubby for a few days, I came to realize that he breaks out with his typical dermatitis herpetiformis rash every time he eats them, as well. He's not getting the bloody sores, but the other morning, his scalp was bleeding, so I was forced to accept the idea that he is probably in denial right now.

After dealing with the shock of seeing his bleeding scalp, I also realized that I can't go on doing this. I can't keep bringing risky products into the house. I can't keep taking risks with our health. What little of it we have left, anyway.

I am a super-sensitive celiac, and it's time to admit that. It's time to accept that fact, and embrace it 100 percent.

My Struggle with Super Sensitivity to Gluten


For a couple of years now, I've looked at super sensitivity as a spectrum. We each fall on that spectrum in a different spot.

On one end live folks who can follow the generic advice traditionally dished out by celiac experts, the advice that benefits the food companies, celiac organizations, and research scientists, rather than the celiac themselves – and be fine.

On the other extreme lives those who have to raise their own food and livestock in order to survive.

For those of us who function in between these two extremes, we often struggle to find our place in the gluten-free world. However, that spot on the spectrum doesn't appear to be permanent. Instead, a lot of us grow more and more sensitive to gluten as time goes by.

I happen to be one of those folks.

This past week, I realized that I've pretty much knocked myself back to square one by eating those stupid tortillas. I feel like I did right after I discovered that the brand of local butter we were using had been glutening us for months.

It wasn't an immediate reaction. I'd eaten about 6 tortillas over the course of a couple of weeks before the symptoms hit, and I think the delay only prolonged the agony. The villi were being damaged, undoubtedly, but I was attributing how I was feeling to lactose intolerance.

The gut pain is quite distracting, and the exhaustion is interfering with my ability to function. I'm experiencing a lot of brain fog and off-balance issues. Plus, we have a storm moving in today, so the sensory dysfunction, ear pressure, and pain that bad weather always brings simply compounds the issue.

Something is different.

My life is changing a bit quicker than I expected. Pieces that needed to fall into place, so we can move to Texas are happening, but it's more than that.

There is a mental shift that is occurring. Maybe it's a bit emotional, too. I don't know.

What I do know is this:

I can no longer pass out generic advice to those who have been diagnosed with celiac disease.

Why?

Because I have no idea if that general advice is harmful or not. Most of what is stated from the celiac pulpit comes from the perspective of the food industry.

Why General Advice for Celiacs Might be Harmful


Many speakers have huge conflicts of interest, making their advice suspect. For example, if someone is receiving grants or donations, or they are a personal consultant for a major food company, their opinion on what's safe or not safe to consume is going to be greatly influenced by that company.

It's like all of the bloggers who receive free products to try out in exchange for an unbiased review on their blog. If the food is crummy, how many bloggers are actually going to say that on their blog? If they tell their readers the truth, companies will stop sending them free products to test, and that means less income for the blog, overall.

There's also a tendency for celiac organizations to stretch the truth or conveniently leave out important facts that you need to know to make an informed decision.

This happens all the time regarding the FDA gluten-free food labeling law.

One person in the study used to justify the 20 ppm level had a complete relapse when given a 10 mg capsule on a daily basis. But since his symptoms were so severe that he left the study and wouldn't submit to a biopsy, his results were not counted.

There have been plenty of studies that have shown that the average celiac doesn't heal on a standard gluten-free diet of up to 20 ppm, even after 5 or 10 years. When placed on a whole foods diet, minus dairy for 4 weeks and rice as the only grain, most of those individuals heal quickly.

That tells me that there is something very wrong with our average gluten-free food supply.

Super-Sensitive Celiac: My New Brand


When I started this blog, I thought a gluten-free diet was going to be a journey toward health, so originally, I called it:

Gluten-Free Journey to Health

When that didn't happen, and I ended up having to go dairy free for a full 3 years after diagnosis, I changed the name of the blog to:

Making the Gluten-Free Dairy-Free Journey

When I went back onto dairy products, the blog morphed yet again to:

Making the Gluten-Free Diet Journey

A few months ago, I came to realize that eating gluten free wasn't a journey. There is no destination to reach. Gluten free is a dramatic change in lifestyle, which is permanent.

It's NOW.

So, I started thinking about creating a whole new blog with a different scope.

At that time, I was having difficulty coming up with a suitable name that could be branded, as well as be a nice umbrella for all of my blog topics, so I started putting up more posts here. Having to maintain several blogs is more than a little taxing, but I didn't have a firm grasp on how to solve the problem.

I wanted to merge all of my blogs into one blog, at that time, but it just didn't happen for me.

Over the months, I played around with a few different celiac and gluten-free food ideas, but I couldn't find a universal title that would be a sort of umbrella for all of my blogs.

Until now.

One day, the phrase “Super Sensitive Celiac” popped into my head, and I knew that was it!

It was a name I could identify with.

It was a blog title that would suit everything I wanted to blog about, because the Super Sensitive Celiac was me!

From that moment on, the project began taking on a life of its own. At least, up until I got glutened by those blasted tortillas and wasn't able to post very much on any of my blogs.

Yesterday, I merged the Affordable Gluten Free blog into the archives of Super Sensitive Celiac.

I haven't published any of the recipes or frugal ideas from the budget blog yet because I want to take the time to update the posts and make sure the recipes and information I'm giving out contain accurate advice for those who are more sensitive to gluten than the average celiac. Publishing one post at a time, will also allow my new adventure to grow slowly.

In a couple of days, I plan to do the exact same thing with this blog.

A lot of the information that's here is definitely worth keeping, and applicable, even for super sensitives, so I plan on republishing these posts onto the new blog once I get them updated with current information.

If you've subscribed to my email updates here, make sure that you visit the Super Sensitive Celiac blog and subscribe to the post updates over there because the information and recipes I plan to publish at the new blog will still be useful for you, even if you aren't particularly super sensitive to gluten.

I will not be publishing any more posts to this blog.


Moving forward from here, everything is eventually going to switch to the Super Sensitive Celiac blog instead.

Thursday, August 18, 2016

Celiac Disease Awareness and Overweight – Are All Celiacs Skinny?

Gluten-Free Expo Participants: One Heavy, One Thin
Gluten-Free Expo Participants
(photo: TownePost Network CC BY 2.0)
Celiac disease is one of the most under-diagnosed diseases today, even though it affects 1 in 133 people worldwide -- about 3 million people in the U.S. alone.

Non-celiac gluten sensitivity is thought to affect 6 times more people than have celiac disease, but it is just as under-diagnosed.

WHY?

I first wrote this post after coming across a thread on a gluten-free forum that reminded me of my own problems finding dependable medical care. It still floors me today that so many doctors have no clue how to suspect and diagnose celiac disease, let alone treat it.

In this particular case, a young girl went to a colonoscopy and endoscopy specialist looking for help, but the doctor’s first reaction was to her weight: 

“I see you’re quite big,” he said, “not skinny like your mother. Are you sure you have celiac disease?”

Despite the fact that celiac disease is an inherited condition and you have a 1 in 20 chance of triggering the disease -- if you carry the gene yourself and a first-degree relative also has celiac -- this doctor refused to even consider the possibility of gluten intolerance, most likely due to his outdated medical training and lack of celiac awareness.

Celiac disease is not limited to just underweight people. 

That stereotype has not held up to scientific scrutiny. In fact, the presentation of celiac disease is changing at such an alarming rate that it is no longer even spoken of as a gastrointestinal condition.

Today, celiac disease is known to be a multi-system condition that can affect any organ or body system, including the central nervous system. Over the past 30 years, there has been a dramatic shift from classic celiac disease symptoms upon diagnosis to an abundance of atypical presentations.

The data on weight isn't difficult to find. Yet, many doctors continue to insist that only skinny people can have celiac. While it's true that many people do suffer with malnutrition at the time of diagnosis, being normal weight, overweight, or even obese does NOT exclude you from having celiac disease.

Here's the scoop:

Friday, August 12, 2016

Canadian Celiac Association Says “Don't Eat Gluten-Free Cheerios!”

Bowl of Cheerios with Blueberries
(Photo: m01229 CC BY 2.0)
I last wrote about Cheerios in the fall of 2015, after General Mills decided to voluntarily recall 1.8 million boxes of Gluten-Gree Cheerios.

That article was originally published on a now defunct gluten-free blog. Since Cheerios was no longer a hot topic when I gave posts a new home, I didn't republish it. I just tucked it away for safe keeping. Until today.

Today, I discovered that the Canadian Celiac Association (CCA), the organization that certifies gluten-free products up to 5 ppm, has announced that they do not recommend that those who have celiac disease or non-celiac gluten sensitivity consume these gluten-free labeled Cheerios.

Apparently, General Mills has been able to bulldoze their way into Canada, somehow, and will be marketing 5 of their Cheerios flavors as gluten free, the same flavors that are available here.

Oddly, the cereal giant is not just introducing Gluten-Free Cheerios to a small geographical area, to see if Canadians react to the mechanical sorted oats like a large percentage of the celiac population here does. Instead, they are rolling it out all over the country.

Like Gluten-Free Watchdog and other concerned individuals and organizations here in the U.S., the Canadian Celiac Association initiated a conference call on August 2, 2016, to discuss their concerns with both General Mills Canada and General Mills US.

The results of that conference call brought the following recommendation:

Tuesday, August 9, 2016

Mission Gluten-Free Flour Tortillas – Product Review

Package of Mission Gluten-Free Flour Tortillas - Soft Taco Size
In general, gluten-free tortillas are one of those things that you just learn to live with, as they can be fairly bad, so I was pretty surprised when we recently tried Mission's attempt at making a gluten-free flour tortilla.

Although I had tried making flour tortillas from scratch a couple of times, soon after we went gluten free, I quickly realized that I just didn't have the knack for it and turned to a variety of pre-made gluten-free products instead.

That decision really didn't turn out much better.

The extra-large brown rice tortillas made by Tortilla Factory are essentially non-roll-able and gritty, but they are eatable if you turn them into a quesadilla or fry them into a chimichanga. They are dry and hard, so I tried steaming them once, but that was pretty much a gooey disaster.

Tortilla Factory's teff tortillas can actually be rolled into a burrito, if you heat them up in the microwave first. But unlike the brown rice tortillas, teff is bitter, so they don't taste very good. 

We tried Udi's tortillas once, due to the rave reviews from the Celiac Support Group at the Delphi forums. They were made with white rice flour, a bit thicker than a regular tortilla, but no matter what I did to them, I couldn't get them to cook. They were always raw, doughy, and gaggy.

Rudi's white tortillas were pretty good, actually.

Super thin, they were the best we had tried so far. Available at the local grocery, when we lived in San Pete county, they were light, white, and frozen for convenience. We were really disappointed when we moved here to Salt Lake county and couldn't get them anymore.

For the past three years, we've been making due with corn tortillas. Corn tortillas are okay, but when you're hankering for a bean-and-cheese burrito, a soft corn tortilla just isn't the same.

For that reason, I was really excited when I heard that Mission had come out with a gluten-free flour tortilla.

Saturday, July 16, 2016

Eating at Chipotle Mexican Grill – Gluten-Free Restaurant Review

Chipotle Salad: lettuce, corn salsa, cheese
Chipotle Mexican Grill Salad 
(Photo: Michael Suechang CC BY-SA 2.0)
Hubby and I never go out to eat any more. 

Never. 

In our experience, it isn't worth the risk. 

I can count on one hand the number of times I have eaten out and "not" been glutened.

With odds like that, we gave up trying to find a suitable restaurant in our area long ago and started keeping a few gluten-free products on hand instead. We chose things that would make super-quick lunches and dinners, such as gluten-free corn dogs or frozen salmon patties.

Gluten-free pizza used to be a stand-by, but both hubby and I have been reacting to mozzarella cheese lately, so pizza is no longer a quick meal for us.

A lot of gluten-free folks recommend Chipotle Mexican Grill when eating out because the only thing on their menu that supposedly has gluten is their flour tortillas. These folks talk about how much they love eating at Chipotle's, how they go there all the time, and have never been glutened.

When we were in Texas for the Fourth of July visiting my kids and granddaughter, we decided to give Chipotle Mexican Grill a try. This is what happened . . .