Hope everyone had a nice, healthy, gluten free, stress free, and restful holiday. I didn’t post last week due to travel, but I did read a lot of facebook posts in the celiac groups. There seems to be a few types of posts. Let’s talk about them and what they mean in the wider community.
“I just had a blood test that indicated celiac disease, do I need an endoscopy?” or the other version of this is “I was just diagnosed with blood tests and…” The correct answer to this is “Your diagnostic process is incomplete. Please continue to consume gluten until the endoscopy is complete. If the endoscopic biopsy and blood tests agree, then the celiac diagnosis is confirmed. If the biopsy and blood tests do not agree, please continue searching for a solution with your doctor. Also, keep all of your test results just in case the doctor’s office loses them.”
The only caveat to this is the triple positive blood test – TTG IGA 10x normal, positive EMA, and positive genetic screen. Most of the time doctor’s don’t run all of these tests at once because it is significantly more expensive. However, to be diagnosed without an endoscopy, you must have all three.
There are lots of people that will argue that the endoscopy is an unnecessary test. They will further argue that you can only reach a small part of the small intestine and maybe the damage is further down. Studies show that if there is damage from celiac can be seen in the duodenum (first part of the small intestine) and will be consistent across to the jejunum. The duodenum is 7 to 9 inches long. The endoscopy will reach all the way to the top part of the jejunum (second part of the small intestine). Doctors have approximately 9 to 11 inches of small intestine to find celiac damage.
Anyway, that’s the answer – on to the next question!
“I just got diagnosed and don’t know where to start. What are the tips and tricks for a newbie?” They probably just got told to go gluten free and don’t know where to start. They either just got diagnosed with celiac or maybe their doctor said to go gluten free. It doesn’t matter. The correct answer is, “Whole foods – fresh fruits and vegetables, rice, potatoes, and unmarinated meats and seafood.” Anything else is superfluous. This is where we all should start and where we should recommend people start. Replacing things in the kitchen can all wait. Over the next couple of months, replacing toasters, cutting boards, and non-stick cookware can all be taken care of later. What am I going to eat for breakfast, lunch, and dinner is normally the first things to be addressed.
“I got glutened. How do I get over this fast?” My answer is “Water, rest, and anything over the counter to stop whatever issue is happening.” I don’t really have a good answer for this one as there really isn’t anything.
“I got glutened, but I don’t know how. Everything I ate was gluten free.” My answer is, “Evaluate what you ate searching for hidden gluten. If you are certain there was no gluten, then it isn’t a gluten reaction.” Many people think they are having gluten reactions when instead they are having perfectly normal reactions to naturally gluten free foods.
Let’s say you ate a meal with onions, beans, and broccoli. Onions, beans, and broccoli can make people bloated and gassy. Might you get bloated and gassy when getting glutened? Sure. Is it more likely, that you are bloated and gassy just like anyone would be after eating onions, beans, and broccoli? Yes, the bloating and gassy in this instance have nothing to do with celiac.
This is why I advocate for a gluten challenge. I get bloated and gassy a lot. However, my gluten reaction is vomiting, fatigue, and constipation. My gluten reaction is completely different from normal gastrointestinal discomfort. That’s how I know the difference.
“My family is great/sucks when supporting my celiac diagnosis and gluten free diet.” This is especially common after Thanksgiving, Christmas, Easter, and birthdays.
If your family is great, I’m very happy for you. I typically don’t respond to those posts.
Here is my answer if your family sucks, “I’m sorry. Remember it is not their responsibility to manage your disease. Know that they don’t understand celiac and for the most part believe it to be a fad diet. As you have had to learn to deal with this major life change, they will have to adjust as well. They may never understand or support you but you can manage your disease.” We all have people that are less than supportive of our disease and it is all in how you manage it. Make your discussion matter of fact.
Also think of this as a time to educate them. Talk about how celiac is an autoimmune disease that attacks the small intestine. Talk about how untreated celiac can lead to malnutrition and even a fatal cancer. Talk about how you had blood tests and an endoscopy to make sure it was celiac and not something else.
I am always prepared to not eat at events and have snacks with me at all times. When someone does make an accommodation for me, I’m always grateful and I make certain to thank them profusely for thinking of me.
When your family and friends aren’t supportive, it stinks. But much of how they react is how you put it forward. So, think of how you are putting the information out to people also. I know I make people mad all the time without even trying and I know I can be a bit of a bull in a china shop. I try very hard to be kind, understanding, and delicate in my requests to accommodate my disease. I fail a lot, but over time, I think I’ve become pretty good at letting people know how serious it is.
I’m sure there are more categories, but these are the ones I saw.