Oh, diabetes/celiac/allergy/...?

I've had diabetes for a little over 7 years now, I've gone from shots to pens to pump and then back to pens. I've had good A1Cs and not as good A1Cs. My A1Cs have usually averaged around 7.5 until recently. I'm in my second year of college now and for the past year or so I tried to pretend like I didn't have diabetes. I heard on a daily basis from family, friends, doctors, that I would have complications if I didn't take care of myself like I had before. After a year-ish of not going to my doctor, I finally got the courage to go even though I was scared to death of what he was going to say to me, partly because I knew I NEEDED to go to the doctor, and partly because I was having many random symptoms, of what I wasn't sure.

Before I scheduled my endo appt., I went to the local clinic to have them check out my most annoying symptom. For several weeks I had been having food feel like it was 'stuck' in my throat when I would eat- to the point where it was hard to eat more than a few bites of something without feeling nauseated. In addition to feeling nauseated, I also would become ridiculously swollen whenever I ate. Within 10 minutes of putting food in my mouth, like clockwork I would bloat in my upper abdomen to where it felt like someone had blown up a balloon and put it in my ribcage. My other symptoms were: hair loss, loss of balance, loss of appetite, fatigue, and a few other random ones. The doctor got onto me for my high A1C and sent me home with some medicine for reflux. I took those pills for about a week and in the meantime scheduled an appointment with a Gastroenterologist, as my stomach problems were getting worse.

I went to see the Gastroenterologist and he wanted to do an endoscopy. He said he suspected he would find something inflamed, maybe an infection, that was irritating my digestive system. He sent me home with extra strength reflux medicine and wanted to see me in 3 days for my endoscopy. Three days pass and I do the endoscopy; he found nothing but a very small amount of irritation at the opening of my stomach. 

I went home and was just so frustrated at how I felt like I was falling apart. Also, a new symptom had started; edema. Not just my ankles either. My whole lower body, as well as my hands, was swelling up and becoming so tight it hurt to walk. My Mom had a thought and said, "Why don't you google allergies? Maybe you have a food allergy of some kind."

I googled wheat allergy and as I read on Celiac Disease, I became convinced that's what I had. I had EVERY symptom. I immediately switched to a gluten free diet and within 3 days was feeling almost completely normal again. I hadn't felt that normal in a month. 

It was finally time for my endo appointment. I went in expecting him to be mad at me for not visiting in so long, but he just told me we need to work together to get my A1C down. He then asked me to tell him everything that had been going on. When I was done he said that he would do blood work, but he was sure I had Celiac, since it does tend to happen to Diabetics more often than non-diabetics. He also mentioned that if it wasn't Celiac, there was a possibility that it was my extremely high A1C messing up my body, and causing me to have something called 'slow emptying stomach'. I, of course, was hoping it wasn't the second. 

A month went by and I got a letter from him in the mail. It wasn't Celiac. I cried and cried because this meant that I couldn't ignore diabetes any longer. Either I took control of diabetes or it was going to keep damaging every part of my body until I was dead. I have been keeping tight control of my diabetes for about two months now and have my next endo appointment tomorrow, and my A1C will be much, much lower than at my last visit. My doctors still haven't been able to figure out if all my symptoms are because of what my A1C was, or if it's something else, but I'd love to hear if anyone else has had any of these strange symptoms with their diabetes or if you've had a high A1C and had these problems and they went away. I'm still dealing with the edema pretty badly, but the other symptoms are gone for the most part (this is with me still following a gluten-free diet) but the edema is the most annoying problem of all of them to me. Anyone have any knowledge on type one and edema? Thanks!

It's very possible to have a gluten intolerance without having Celiac Disease. Instead of being an autoimmune disorder, it's a food allergy. If eating gluten free makes you feel better (more normal) and you feel you can follow that diet for the long term, I would continue following it. Your health is worth it.

Edema is usually a symptom of something and not the actual problem. It could be related to blood pressure, dehydration, salt intake, kidney function, congestive heart failure..... etc. Edema is a symptom of many, many things. There's really no way to know what the cause is until you start doing some tests.

Good luck to you. I follow a GF diet myself for Celiac Disease. Let me know if you have any questions.

Thanks for your reply!

My endo saw me yesterday and was pleased with my lower A1C, so I'm headed in the right direction. He did agree that I had put on a significant amount of water weight and he put me on water pills to get rid of the swelling, and potassium pills since you lose so much potassium while taking water pills. He says that while it is rare, he believes my edema is from my body having lower blood sugars/more insulin than it's used to, and actually being able to use the insulin it is receiving. He thinks once my blood sugars have become more stable for a few months that it'll balance out and the edema will go away.