Potpourri of thoughts

Today is random Tuesday thoughts. I’ve been thinking about a lot of varied stuff but none of it complete enough for a whole post, so that calls for a potpourri of randomness today.

Support vs. Education – One of the Facebook groups has blown up recently regarding people not being “supportive” of others. I’ll be honest, I’m not the most “supportive” person you’ve ever met. I have a tendency to tell you what I think and what I believe instead of what you might want to hear. Many times the suggestion is to scroll past when you can’t say something nice about someone’s post. 99% of the time I agree. Where I don’t agree is when someone is saying they can’t or don’t want to do a gluten free diet or when they had a weak moment and ate gluten. Doing damage to yourself, no matter how low or bad you are feeling, is not okay. It is like hearing someone say they are going to kill themselves (dramatic I know, but making a point here) and not intervening to help.

If you aren’t strong enough to not eat the gluten and decide to post on Facebook about it, you deserve to be reminded that you are worthy of being healthy. You deserve to be reminded that the only person that can take care of you, is you and nobody else will do it for you. You need to be reminded that it is stupid to harm yourself because you are the only person you are harming. You also need to be reminded that you are not a victim. You made a choice to consume the gluten and you should not have. You must live with the consequences, learn from your mistakes, and do better next time.

And don’t tell me you didn’t know the bread, pizza crust, fried chicken wasn’t gluten free because gluten free bread, pizza crust, and fried chicken all look, feel, smell, and taste different than their gluteny counterparts. If you are new to gluten free, you get a pass, but people diagnosed more than 6 months, don’t on that one.

Gluten free Pizza and Pasta Joints – When a pizza or pasta joint says they have gluten free options – just don’t. The pizza places are a cross contamination nightmare – flour in the air, cross contamination when creating the pizza, cross contamination in the oven, its everywhere. Boiling gluten free pasta in the same water as gluten pasta is my favorite trick for cross contamination in pasta joints and goodness knows someone has touched gluten pasta with the sauce ladle before putting sauce on your gluten free pasta. For me, this is a hard line I don’t cross. I’d rather have gluten free pizza at home and I don’t eat gluten free pasta.

If you are stuck at one of these places, I would suggest a protein intensive meal – like grilled chicken, salad, chicken wings, etc. I know there can be issues with all of these too, but at least it is easier to dissect where the gluten might be.

Symptoms vs Diagnosis – Read a post on Facebook today regarding someone getting a diagnosis of Celiac from their doctor without positive blood testing and without an endoscopy, simply based on self reported symptoms. It first made me mad, then really, really sad. In thinking about it, they have made a choice and asked a doctor to give them a diagnosis of a significant auto immune disease without any scientific scrutiny. If that is what the doctor agreed to fine, but my guess is in the next year or two, another doctor will suggest a gluten challenge. Then there will be another post about how dare the second doctor question the original diagnosis. It just doesn’t make sense to me. Why would you want this diagnosis when there is no medicine to help and without fully understanding what is happening in your body? Celiac has over 300 symptoms and even just a gluten elimination will not tell you if you have Celiac or not. They’ve done small studies where people who were self-diagnosed as gluten intolerant were given 3 diets – low FODMAP, gluten, and gluten free. People felt the best on the low FODMAP diet and could not discern between the gluten and gluten free diet.

TTG-IGA – I know lots of people have their TTG IgA return to normal very quickly after diagnosis. For me, it took 18+ months for my TTG IgA to get into the normal range. So, does that mean I had Celiac for a really long time before diagnosis and these people didn’t? Does that mean they are better at the gluten free diet than me? In the first years of my diagnosis, yes, they are probably better at the gluten free diet than I was. Now, my numbers have returned to normal and haven’t been outside of normal for about 5 years. But I start to worry and wonder about whether there is something else going on when people’s numbers return to normal so quickly. It’s just a gut feeling and I could be wrong, but it just doesn’t seem right to me. Especially adults returning to normal that fast. I guess if your numbers are just barely positive I could see it happening, but not when the TTG IgA is over 100 and in 3 months they are in the normal range. It just seems really hard to me.

Tomorrow I will get back to talking about medicines and clinical trials. I just needed to get my random thoughts out into the world.

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