For me, celiac disease is hard. But there are lots and lots of parallel issues I try to stay away from because they are so completely controversial. I’m going to gently wade into them here. I have very strong feelings about all of these topics, but don’t really have enough science to back them all up.
Makeup, shampoo, conditioner, and other items that people put on their skin do not need to be gluten free. Putting something on your lips needs to be gluten free because the chance of ingestion is high. People may have reactions to certain makeups, shampoos, and other personal care items, but it is not related to gluten. There are no scientific studies that say that gluten can cause a skin reaction – mostly because the gluten molecules are too large to absorbed by the skin!
With dermatitis herpitiformis (DH) it is a manifestation of gluten-based enteropathy that affects the skin. Notice I didn’t call it celiac disease. Technically the cures are the same – a gluten free diet – but they are considered different diseases. When someone with celiac eats gluten, the autoimmune reaction is directed toward their small intestine. When someone with DH eats gluten, the autoimmune reaction is directed toward their skin. Also, DH can go away and be cured. The rule is after 2 years without the steroid dapsone, someone can return to a gluten containing diet to see if their DH returns. Which begs the question, can celiac wax and wane like DH? Its harder to see our small intestines, so I don’t know if we will ever get that luxury to know, but there is some suggestion it might.
Does having celiac disease mean we are immunocompromised? Nope. You should live your life as anyone else would, except the not eating gluten part. There are a few things that need to be evaluated and monitored. Also, the vaccination schedule for certain adult vaccines may be altered for those with celiac as well – like pneumonia and shingles.
Does having celiac disease mean we are immunosuppressed? Nope. Typically, those that are immunosuppressed are that way due to drugs, like with chemotherapy drugs, steroids, or certain anti-rejection drugs for those with organ transplants.
Blood tests and celiac diagnosis is tough. I get incredibly frustrated on the Facebook groups where people say they got one slightly positive or positive test on a celiac panel and were diagnosed with celiac. They have immediately gone gluten free. Great. My caution is that this is one test at one point in time for a major overhaul of your lifestyle and that of the family. If someone doesn’t want an endoscopy, fine, don’t have one. But repeat the blood tests, while remaining on a gluten free diet, in 90 days or so to see if the blood tests have changed.
I correlate this single blood test theory to someone being diagnosed with cancer after a single blood tests. I got some blood work done and my RBC, hemoglobin, and hematocrit were all out of range high. They were high enough to indicate a type of blood cancer called polycythemia vera. Treatment involves blood letting (phlebotomies), aspirin, and if that doesn’t help drugs with some heavy duty side effects. I don’t have access to any of these therapies without a doctor, other than the aspirin. So, I had more tests and my blood counts returned to baseline, which is always in the high-normal range.
Because currently the only cure for celiac is a gluten free diet, people feel like they can take their health into their own hands. They can affect change without a doctor which is a very, very powerful feeling. The problem is that celiac is more than just a diet and the gluten free diet has its own problems too.
I also worry that people are getting misdiagnosed. Especially the people that were so good at their diet. They say they have TTG IGA’s in the 50’s at diagnosis and say the next test they had 3 months later was normal. Most people I know with celiac take longer than 3 months to get their blood tests into normal. There are the few outliers that can do it, but they are special and awesome people. For the most part it can take months if not years to get blood tests into the normal range.
So, for goodness sake, please get all the right testing done. If after a reasonable time you and your doctor decide celiac is the right diagnosis, I’m totally on board. But at least you looked at it seriously rather than just a single test.
We are all constantly exposed to gluten. No matter how hard we try, we are always exposed. Even in our own gluten free homes. People carry gluten on their shoes, hands, hair, clothes, and jackets. It is everywhere. If you think you are 100% gluten free, I can almost guarantee you are wrong. Our job is to mitigate the risk to gluten exposure. Mitigating the exposure is how we stay safe. Everyone does the calculus differently on what is safe and what is not. Some find Cheerios safe and others don’t. For me, Cheerios aren’t safe, but I didn’t really like them anyway. Since the study about toasters being safe to be communally used by gluten eaters and the gluten free, I’ve been using the common toaster. I wipe it out first, but I’ve been using it without issue. Some may call me crazy and that’s okay because that’s my calculus.
Finally to the hardest of hardcore celiac folks – the silent celiacs. You guys and gals are my heroes. You endure a difficult lifestyle for not much reward. I was talking to a doctor about silent celiacs and their role in celiac research. They would be great at celiac research because gluten challenges don’t affect them. There isn’t the fear of gluten challenges. But at the same time they are terrible test subjects because the side effects of gluten exposure don’t affect them. It is kind of a double edged sword there.
There were a couple more, but I can’t remember them now.