My first sign of problems was stomach issues starting in my early 20s (though i was always kid with skinny legs and big belly). They looked for celiac with endoscopy and it was negative. Soon after that I was diagnosed with hypothyroid (after months of increasing weight and feeling terrible). Was also diagnosed with pcos.
I did triathlon and ate lots of carbs and knew where every toilet on our training routes was - and often made mad dashes for them. Stomach . Issues continued. Another endoscopy - also negative. Pregnancy and diabetes. Antibody negative. My oldest daughter had failure to thrive… stopped growing as soon as tried to introduce solids. She was such a chucky baby, and terrible diarrhoea. Did blood test for celiac which was negative. I refused to do endoscopy on such a small child. We did elimination diet at 2 and she gradually did much better gluten free.
Her father is Chinese - so she must have got it from me. We are strictly gluten free for Her. Eating gluten results in tummy ache and diarrhoea - though less as she has gotten older. Her younger sister has been gf from the start and has always thrived. She does get gut symptoms from gluten. Both girls continue to have sensitive tummies. The youngest gets rashes around her mouth when she eats so i do need to do allergy testing with her to try to get to the bottom.
I am not strictly gluten free. Though I probably should be. Maybe would help with weight, tummy etc.
Order was tummy issues (probably celiac), pcos and hypothyroid, then diabetes (9 years later).
Sorry, you would take having T1D any day of the week? As someone with CD but not diabetes, I’d rather have CD any day of the week! Just wanted to clarify…
I have a bunch of auto-immune and am just racking them up as we speak. I’ve hashimoto, LADA, RA and they have recently begun to think that with the gastroparesis I have Crohn’s…so far I’ve tested negative for CD…on endoscopy as well as blood tests…but I think I have enough …
I’d personally like to give them all up…but the GP is worst, the nausea is profound…trying to manage sugars when you don’t know when you digest and feeling so nauseated when you may be low is scary and a daily battle…
Well Senator, the truth is neither one is preferable to anything. The reason I say what I say is this. Managing diabetes is a whole lot more work than managing CD, I will grant you that. The differenc is that I can actually manage my diabetes. I follow a pretty strict diet, but if I have occasion to treat myself to something I don’t normally have, I can do that. And, I can do that safely. I can make adjustments in what I do and eat around that time and or I can take insulin to cover it appropriately. I also have a very good idea about the effect of what I am eating at any given time is on my blood sugar.
On the other hand, with CD it is not always apparent that what I’m about to eat may contain gluten. In fact, unless I have made the food myself, I am really taking a leap of faith to eat it. And, if I decide that I just cannot pass up that treat, even if it is only a small bite, I have no option for treatment. My only option is to just be sick for a while. I will probably be sick for about three days, sometimes longer. Managing CD is simple; I never touch anything containing the suspect grains and I assume that anything I eat that I did not prepare can likely make me sick. Unless it states that it is going free.
That is why I say I would take type I diabetes over CD any day of the week. It actually has less of an impact on my lifestyle and diet than CD does. And both of them are deadly if ignored. I will say though, that the silver lining of having CD while being type I is that it makes it very easy to avoid an awful lot of carbohydrates.
I agree with you on that one for sure. Gastroparesis is a real wildcard in all of this. Fortunately, my doctor says mine is a relatively mild case, if there is such thing. It doesn’t bother me all the time, but there is no mistaking when it happens. My blood sugars make no sense and stay elevated. My stomach feels awful and, well, you know the drill.
One thing that I have found which seems to help me at least is a digestive aid called bromelain. I believe it is derived from pineapple. I just had a bout with this last week and after suffering with it for a couple days I took one of these supplements. There was no mistaking, later in the day, what had been in my stomach had moved on. I don’t know all the biology that is for sure. But, I do know that I get the same results every time and that my blood sugars always come back into control immediately after. I don’t know if it will work for you but it does for me.
I’ve been gluten free for over 20 years, blood glucose issues for 5 years, and various other autoimmune problems. I think not knowing I had celiac for the first 35 years of my life has contributed to many of my chronic health issues including the osteoporosis I was diagnosed with when I was only 40. I was a sickly child and young adult, often eating toast and crackers thinking it would settle my tummy troubles! Glad there is so much growing awareness now about how food can harm those of us with sensitivities so people can be spared years of illness and weakened immune systems. I do have one of the most common genes that those with celiac and LADA have, which is common amoung those with my Finnish heritage.
Thanks Cyclinglady I will have to be more careful… the thing is I’m still not sure what is going on with me… and if that even caused the runs… because I’ve had IBS my whole life since my 20’s maybe… which really means they have not clue what is going on I think… lol. I do know that the gluten in the hospital did affect me though… but sometimes cheese does it too… And I am improving slowly a bit so trying to do the avoid cc must be helping too… I just wish I had a definitive answer here. What are the spoons for?
It’s just very disappointing that the only meal I felt ok eating out, which is at starbucks, has to have a gluten scone attached to it… ugh… I think I will contact the coporate office and see if they can make that one totally gf. I am planning at some point to visit a friend in CA and he has already picked out some gf restaurants. I should look for them here too.
I used to do that at a lot the movie theatres… just bring my own snack and water, lol… Thing is I can’t eat most things because of everything else and they are way too high carb for me and or I have no clue what the carbs are because they’re not required to tell you…
Thanks for insights on the bromelain…I’ll try anything for the nausea etc…I suffer all day every day and am one of the few for which it is a constant with no real relief.
I was going to respond on another group, for those that DON’T treat…this is a real real very real threat… my life, from foodie to smoothie should be an example.
Yep. This is the real difference between diabetes and celiac disease or allergies. It’s very simple to avoid carbs compared to avoiding gluten/allergens. Just order a burger and take the bun off, no need to even inform the kitchen staff that you’re eating a special diet. That sort of thing isn’t possible when cross contamination is a concerned, because even microscopic traces can cause reactions. Fortunately, I don’t seem to be that sensitive to dairy or wheat anymore (two years ago I was, and I still treat avoidance the same, but I’ve had slip-ups with cross contamination and don’t seem to react, though with larger but still small amounts I do react), but with potato I am. Flip some fries with a spatula and then flip my burger and I’ll start reacting within about two minutes of taking a bite. Give me gravy with potato in it as an ingredient and I’ll be full-fledged anaphylaxis within minutes. It really makes eating out at any restaurants or anyone else’s home or while travelling a huge gamble, because a lot of people don’t understand what cross contamination is (or even what an allergy is, since that term is so over-used by everyone).
I do the same, always have food available in my bag (partly why it’s so heavy, between food and medical supplies!). It’s virtually impossible for me to stop in a random convenience store or coffee shop and find something I can eat. So, if I don’t bring something myself, I’m apt to not eat all day until I get home. When I travel, I often bring an entire “food suitcase” in addition to my regular luggage.
I have found a simple quick fix snack that I now keep on hand without fail and carry with me all the time. I discovered it when I was out with my wife one Saturday at the local big-box hardware store. I typically eat my second meal around two in the afternoon. This can get awkward on the weekends because we will typically be doing something away from the house around that time. I was wandering around on my own when I began to realize my blood sugar was dropping. Not dangerous yet, but I knew if I did not do something about it within the next few minutes I would soon be in trouble. So what can I find at a hardware store since I did not have any food with me? I spotted peanut M&Ms and went for it. It worked perfect. It was a little expensive for what it was and I had far more M&Ms than I needed. But, it had just enough sugar fat and protein to keep me stable for the next hour or so until we got home. I now keep a bag of fun size peanut M&Ms in the house at all times. Every jacket, sweatshirt and bag that I might use when I go out have at least one of those small fun packs in a pocket. Each package has 6 to 8 peanut M&Ms and is a perfect fix when I can feel the lows coming on. The bonus is that they work and taste far better than a glucose tab.
I tend to use glucose tablets for my lows. Because I’m allergic dairy (so milk chocolate is out), I can’t eat M&Ms and the like. However, I am somewhat addicted to this semi-sweet baking chocolate called Camino which is made in a facility free of the top eight allergens (wheat, milk, soy, eggs, fish, shellfish, tree nuts, peanuts). I’m trying to switch to the unsweetened version since eating LCHF, but in my opinion it tastes utterly nasty because it’s so bitter. Today I’m going to try and bake it into chocolate chip cookies and see if it hides the bitterness. I also like to always have an apple and a safe granola bar and some fruit leathers (which I don’t like, I only eat them when my blood sugar is dropping and I have nothing else) in my bag, in addition to any small lunch I might have that day. Bananas are also a great idea, as @Cyclinglady suggested, because most stores and coffee shops sell them and the peel protects them from cross contamination and getting dirty, but unfortunately that’s another food I’m allergic to.
I used to LOVE peanut m&ms… but any time I try to eat that “normal” type of chocolate my bg goes to 250… like a snickers bar… I miss them so much.
I was eating organic chocolates for a while and now switched to coconut white chocolate but they stopped making it… it had no sugars except the chocolate I think and a little agave I think… but with my crashes now I have stopped it mostly. I once did raise a low with a snickers bar though and it was much better than glucose tabs. Now I need juice/smarties or the gels… but smarties are the best because you can just have 1-3 pieces and not overdo it when needed.
I do carry a lot of gf snacks with me too and for raising my bg too when it’s dropping but not a crash… usually I can only eat 1/2 of one because the bolus for a full one can crash me which happened today when I ate brunch… I discovered the think thin gf bars… the only problem is they have soy in them.
My 11 year old son has both. Diagnosed Type 1 first and Celiac a couple months later. Looking back, I am pretty sure he has had Celiac Disease since he was a baby. Autoimmunes! My mom has Hashimotos. I have a cousin with 3 Celiac kids and another cousin with a Type 1 kid.
I will have to be more careful… the thing is I’m still not sure what is going on with me… and if that even caused the runs… because I’ve had IBS my whole life since my 20’s maybe… which really means they have not clue what is going on I think… lol. I do know that the gluten in the hospital did affect me though… but sometimes cheese does it too… And I am improving slowly a bit so trying to do the avoid cc must be helping too… I just wish I had a definitive answer here. What are the spoons for?
