I know that someone with T1 diabetes is more likely to have Celiac Disease (among other things), and I know that it's in my family. I have one cousin that's diagnosed (a very severe case that kept him very sick most of his childhood), and another who has all the classic symptoms (but has never bothered to go to a doctor about it).
I'm definitely not a "classic" Celiac (nowhere near underweight!), but I was complaining about how sometimes my reaction to carbs is unpredictable and chalking it up to the "WTF" qualities of T1, and someone just mentioned the possibility of Celiac disease perhaps affecting carb absorption. It doesn't seem like it would do so sporadically, but I'm no expert on Celiac disease and ESPECIALLY no expert on how it could affect diabetes management. Since I know there are several people on here with CD, I thought I'd ask if you know anything about this theory.
As far as symptoms go, I do have "gastric upsets" (bloating, loose stool as often as not, but not really severe), but haven't really tied them to increased consumption of gluten or anything like that. Who knows if they mean anything, but I do have some of little uncommon or "vague" symptoms I've seen mentioned along with Celiac disease, like depression (I'm dysthymic, meaning I have chronic mild depression), irritability, and skin problems (really sensitive and kind of prone to rashes).
I'll certainly mention it the next time I visit my endo. It's something we talked about on my first appointment, while looking at family medical history, but I really wasn't very concerned about it and she wasn't worried enough to explore that over the known diabetes and a possible thyroid issue (which turned out to be fine).
My friend with T1 was diagnosed with Celiac's last Christmas, he couldn't keep his blood sugars up if his life depended on it. Right before he got diagnosed he wasn't taking any insulin at all and eating just fine.
I was having some stomach issues last year and found out I am lactose intolerant. I have also heard people have similar stomach issues with IBS (Irritable Bowel Syndrome) that is triggered by eating things with high sugar content (my one friend can't even eat fruit because it bothers him too much). Could also be another type of food allergy. The tough thing with those is they are hard to diagnosed. I would say pick something to stop eating (dairy or other certain foods), and not eat them for a few weeks. If you feel better, that might be it. If you don't, try cutting something else out of your diet for a few weeks.
Your symptoms don't have to be consistent. I went 15 years undiagnosed (most people go at least 10 years) and there wasn't any consistency to my symptoms. In fact, they were so sporadic, we just kept passing it off as the "stomach flu." I would lose a bunch of weight, then gain it back, then lose it again, and gain it back again (assuming it was all just teenage/young adult wacky hormone stuff).
Then I got severely anemic. Then I lost a bunch of weight and never gained it back. Then my bone marrow stopped producing red blood cells. Then my Vit D/bone density tests came back wonky. Then I got sick every time I ate, regardless of what it was I ate. Then I had troubles catching my breath. Then my hair started falling out. Then I started losing muscle. Then they discovered tumors in my stomach/small intestine.
Then they diagnosed me with celiac disease by complete accident.
A simple blood test could diagnose you or rule it out. For me, I remember how damn sick I was and it makes the gluten-free diet really easy to follow. The last 9 years (after everything healed) have been some of the healthiest EVER (including much-easier-to-manage-than-before diabetes). And all I had to do was eat gluten-free. Whoda thunk it? :o)
There are also those people who are "a-symptomatic" meaning they have celiac disease with absolutely no symptoms. I vote for getting the blood test (TTG/IgG/IgA antibody tests). It's easy to do, with a fairly definitive answer. They make you go for an endoscopy, which is outpatient and relatively painless. You might have a sore throat and/or stiff neck for a day or two. Not a bad trade-off to know for sure. :o)
C, that's wild that it took so long and so much fro you to get diagnosed. In my little world in my head, I picture people with CD who are really sick getting diagnosed right away... because my cousin was diagnosed so young, I guess. Did they keep misdiagnosing you, or were they simply at a loss? Also, the diet must be so much easier to deal with these days, with all the gluten-free products out there. It seemed like my poor cousin could hardly eat anything 25 years ago! And I remember him HATING his rice bread, and he was too young to really understand why he was so sick and he would sneak something like goldfish crackers and just be a total mess afterword. (Oddly, as sick as he was back then, he's not gluten-free as an adult and he does OK. I don't think he's symptom free, but he's not bad off enough to avoid the stuff. Weird disease.)
Heather, I've thought about that, cutting out gluten and just seeing if anything changes, then trying the next likely culprit if it doesn't.
It sounds like the blood test isn't a bad idea. The endoscopy idea has always scared the HECK out of me, but I guess it would be worth it if my doc gets a result from the blood test that might require more investigation...
They kept telling my parents I was a "nervous kid." Boo. Funny - the doctor who kept telling us that is now the head of some CD organization. Jerk. :op . After i was (finally) diagnosed I had to see an oncologist-hematologist (cancer/blood doctor) for awhile. Not because I had cancer, but because my bone marrow and red blood cells were so dysfunctional.
25 years ago there probably wasn't anything for your cousin to eat. GF foods seem to be a relatively "new" thing despite the disease being around for eons. And I can understand why he hated his rice bread ;o) It's pretty ick-tastic. Thankfully there are lots (and lots) of products out there that are pretty tasty. I can't remember what wheaty-foods taste like, so if it tastes good it's a winner to me :o)
If your cousin has CD and isn't eating GF, he's still causing internal damage even if he doesn't have all the unpleasant side-effects. In my opinion, it's worth it to follow a GF diet, even if it's a pain in the ass, if it means I can avoid irreparable damage and stomach/colon cancer in the future. I value my health quite a bit, considering how much of it I didn't have in the past.
I've had 4 endoscopies and I can tell you there's nothing to fear. You don't remember anything. You're counting backwards from 10... and then suddenly you're waking up. A few ice chips later the only side effect you have is some sleepiness. We can talk about it more later if your doc wants you to have one. No reason to think about it until then :o)
Yeah, I've heard that about people with Celiac not eating gluten-free, but I can only assume he's heard that from his doctors so I don't feel it's my place to mention it... Kinda like when people without diabetes or a medical certification start telling me how to manage things (though they're usually giving totally outdated advice, anyway!). I think I'd be with you on sticking with a gluten free diet, especially now that you can have "treats" like cookies and snacks. That would have been my downfall if I'd had Celiac disease 25 years ago!!! I'd have been sneaking crackers and cookies. :)