I am having the same fight except I am Type 1 on insulin. Even eating the reccomended amount of carbs doesn’t mean you aren’t getting too many calories. And weight watchers, etc… isn’t any help because of the carb/celiac issue. My carb count isn’t great but my calories are high. As I am trying to reduce calories my carbs get screwed up and I haven’t yet figured out why. The better my bg gets the more weight I am gaining. The sugar that used to go out as waste is now being processed into fat. Yeepee! @%#@*##!
I know, I am no help. Just trying to let you know you are not alone!
I have NO experience with celiac, I did happen to have success on Weight Watchers, and I’m a Type 1, so I have no personal anecdote to share, but I can recommend a program called FitDay that allows you to figure out, based on your daily activities, how many calories you burn per day. If you know how many you burn and you can calculate how many you eat, then weight loss by traditional calorie restriction might be an option for you. My husband lost 80 pounds with the help of FitDay before I met him and swears by it.
Also, I often see posters at my endo’s office for metabolic testing that can tell you how many calories you burn per day. Perhaps you could ask your doctor or educator about doing a metabolic test? It might answer questions you have about how well your metabolism works, too.
Best of luck, twix. I hope you find a way to meet your goal.
I won’t even go near Weight Watchers. They are like the American Diabetic Association. It bothers them if you eat more protein than carbs.
Even when I say I cannot have grains, they still tell me to eat bread!
A little wheat in soy sauce got me so sick today. My stomach still hurts, and I had diarrhea for 4 hours.
So if our bodies are using more sugar, the cells are more sensitive to the glucose, then it seems if we cut our calories, this won’t work.
But…losing weight has to be done. It is the one big thing that will help us.
I don’t know how to figure my daily activities, they vary greatly because my work is based on being called in for need. I can be there 2 hours, 6 hours, go home, be called back, be there 3 hours. I drive one hour to and from the place. Nothing is set.
The only foods I can are meat, fish, eggs, nuts, vegetables, and oils.
I don’t eat that much, I would think I would lose weight.
That FitDay seems to be an online food log, which seems to be about counting calories.
I have tried counting calories and even at 1000 per day, I don’t lose.
Celiac Disease is gluten enteropathy, where one cannot eat grains such as wheat, barley, rye, or oats. It causes the villi in the small bowel to become flattened, and other problems such as fatigue, malabsorption, bruising, and more. I had extreme diarrhea and it really affected my life. I had gut pain that would double me up. Removing grains from my diet really helped.
I cannot eat bread, pasta, cake, cookies, crackers, barley, rye products. Grains are in a lot of foods, like soy sauce, modified food starches. It is best to eat plain foods.
That is the catch 22. I haven’t figured it out yet, but I am sure there is a way. A big part of my issue is lack of disipline. It was easier when I was working and not 10 feet from the fridge.
I’m familiar with Celiac. Both my daughter and mother have it. My mother has had it for 14-15 yrs now. My daughter has had it for about 2 yrs. I understand the frustrations of both celiac and diabetes. I actually just got myself retested last week for celiac after being tested once a couple yrs ago. I am waiting for results because I believe I have a sensitivity to gluten myself and wonder if I may have celiac myself now. I eat gluten free quite often now due to my daughters diet so I follow much of how she has to eat now. But I still eat gluten. When I do, I can feel a difference in how I feel.
My mother is pretty small however my daughter has difficulty losing weight and gains it very easily. I see how hard it is on her and how self conscious she is of it and she’s only 11. Most celiacs lose a lot of weight before being diagnosed as I am sure you know but my daughter had the opposite happen by gaining. I’m not familiar with Metformin ER because I’m T1 and have been so most of my life. I’m on an insulin pump. But is it possible that your medication could be causing your weight gain? I think you could at least try changing meds to see if that helps with your weight and also getting better numbers in your blood tests. You could at least discuss it over with your DR. I have difficulty losing weight as well so I understand your frustrations.
Is it possible that you could be eating foods that could be cross contaminated with gluten and maybe you’re not realizing it? I know if that happens with my daughter she gets very bloated and can gain weight after having gluten. Gluten free foods can also be high in calories so check that too.I have read in different celiac discussion groups about other celiacs experiencing similar problems as you are experiencing and obviously being diabetic makes weight loss more difficult too. You may want to check out Celiac.com which is a great resource if you haven’t used it already. It has some great celiac info. there. Well I’m not sure if I said anything helpful or not. I know how frustrating it can be though! Best wishes to you!
It’s a myth that all Celiacs are thin. Gastroenterologists will tell you this.
If you were a true Celiac, and you ate gluten, you would not ever eat it again. You may have a sensitivity to wheat, but if you had true gluten enteropathy, you would know something is really wrong. There are labs, but the gold-standard for diagnosis of Celiac Disease is the small bowel biopsy, and one has to be eating gluten for the villi to appear diseased, or you can have a false-positive.
I eat very simple foods, so I know what I am eating, my last mistake of eating soy sauce won’t happen again. I don’t use mixes or prepared foods as most have gluten or dairy in them.
It is not true that gluten-free foods are high in calories, much the opposite. Fresh vegetables and protein sources have less calories than macaroni and cheese, pizza, etc.
If I eat fish and a cut up tomato for dinner, I don’t think that is high in calories.
I eat nuts, but you can only eat a small amount as they are rich, but very good for you. Remember, I can’t have bread, pasta, pizza, crackers, etc., I have to eat something!!
I have been going to Celiac.com, but they don’t know why I am not able to lose weight, because they are not experts on Diabetes.
How many calories are you eating a day, do you know? IF we don’t eat enough, our body goes into starvation mode, like the cavemen. When we don’t eat enough, we don’t lose weight because our body is storing everything we eat in case it doesn’t get fed enough for awhile.
I would strongly recommend that you see a nutritionist or dietician. If your doc or clinic writes the order, your insurance co should pick it up. If not check to see if you community health or county health has one on staff. She/he can help you with the food part of the equation. Help you plan meals that fit your gruesome schedule…how do you do it? And help with the number of calories you should be eating to flip the switch and help you lose weight. It was the best money I spent when I was diagnosed, got more info from her than anyone else.
Then at your next doc’s appt discuss the metformin. In some cases, rare, but some, met. causes weight gain, as do most of the diabetic gains in their side affects listed. I find it interesting that one of the things they want us to do is lose weight, and then some if not all of the meds that are on the market including insulin will have “may cause weight gain”… Two steps forward, one step back. Maybe it’s not enough met, maybe it’s too much, and maybe a combo would be better for you.
Please don’t bash WW, many people have lost weight on that program, which is more like normal eating and normal life than any other program. I happen to be one of those too — 52 lbs — and counting. Not every plan or procedure is going to work for everyone…I couldn’t do a totally carb free plan, but I can do this one. You’ll find something that works for you, but your team has to be on board with you. A doc, a dietician, etc.
You know, not all insurance covers a dietitian.Mine doesn’t.
I went to one years ago, and she was from the ADA. I never went back. She told me it was a myth that diabetics could not eat cookies, cake, candy…"just eat it in small amounts"
I said, "Why would I ever want to do that?"
I can’t have grains, and why would I even eat those foods?
It really bothered her that I didn’t want 2 cookies a day.
I can’t respect someone like that.
When you are allergic to dairy and have Celiac disease, your food choices are so limited.
For quite awhile I did 1500 calories, then went down to 1200. Maybe that is too much and I need to cut down more.
I can’t see paying for Weight Watchers, I am watching my spending very closely. I might lose my job.
I know it works for some, but if you are like me with the severe food limitations, it won’t work. For example, I had scrambled eggs for breakfast, a piece of fish and a tomato for lunch, and a piece of roast beef with green beans for dinner.
Okay, this may be far out there for you, but I have a friend who can have no dairy and absolutely NO sugar (some type of sugar allergy). Not only that, this person has been dealing with a very serious chronic immunity illness for nearly 25 years. He finds answers in homeopathic remedies and nutritional supplements (primarily a daily cocktail of herbs and vitamins) that allow him to function at his healthiest. Have you considered finding a homeopathist in your area? I’ve never been to one, but I have been a witness to my friend’s well-balanced health for about 15 years now. I have no idea what one would have to say to you about balancing diet, celiac, diabetes, and weight loss, but it’s an avenue that, if you haven’t tried it, offers you little to lose, I would think.
Any time I have taken my friend’s advice regarding the better known remedies (like echinacea and goldenseal for oncoming colds), etc., it has usually worked to my benefit. I’m not a new-ager, but I think homeopathy may have something to offer us as a supplement to our regular medical treatments when they aren’t covering all the bases. I credit my current eye health (which is normal, non-diabetic) to a homeopathic remedy (WITH improved diabetes control, not as an alternative to it) that I tried after being diagnosed with retinopathy and borderline glaucoma 7 or 8 years ago and being told that degeneration was imminent. When you’ve exhausted every other avenue, it might be worth giving it a shot to get your body in balance where weight loss is a possibility.
I am aware of everything you mentioned Twix. My reference to celiacs often being thin was meant before going on a GF diet and before diagnosis. My mother looked like a skeleton she was so malnourished and sick from undiagnosed celiac. She went to 4 DR’s before one finally knew what was going on with her. Dr’s seemed to know much less about celiac when she was diagnosed and caused great frustration to her at the time. I’ve read that weight gain with celiacs is also a sign that the body is healing from celiac. I don’t know how long you have had it now. I also know about the biopsy as well. But blood work is where you start before doing the biopsy and is why I asked to have that done first. Since I have seen both my mother and daughter suffer with celiac I know what the symptoms can be if you have it and how horribly sick you can get. But MANY people do not show symptoms either, symptoms can come and go or they show less symptoms then other people do with celiac. There is a link b/w Type 1 diabetes and celiac as well. That is why I wanted to be tested again because I often feel sick and have many symptoms that celiacs have when I do eat gluten…not just wheat. I have a good chance of having it with a family history of celiac and being T1 as well. I hope I don’t, but I still want to know for sure.
When I mentioned the high calorie intake of some GF foods I meant some of the pre-packaged GF foods you can now find in grocery stores,health food stores or online which can be high in calories depending on what it is which can include GF mixes,crackers,bread,pizza or pasta. I know you listed some of the things you were eating before but I was not sure if you were eating any of the pre-packaged GF foods as well and is why I even mentioned that as a possibility that could have been overlooked. You are correct that most GF foods are low calorie…just not all the pre-packaged ones. You mentioned you recently ate soy sauce that made you sick. In case you are not aware of it, you can use Bragg’s Liquid Aminos to replace regular soy sauce as it is GF and actually very good.
I agree with Cathy that if you are eating very little that maybe your body is just trying to store everything instead of losing the weight you want to lose. Maybe your metabolism is totally off and you’re starving your body. Try eating several small meals throughout the day instead of just 3. If it were me, I think I would also call my insurance and see what they WILL cover with your celiac and diabetes care besides care with just your regular DR. There could be things that are covered that maybe you’re not aware of. It may not do anything but it won’t hurt to just check. It’s just an idea. I’ve had to do that before. You probably have already had your thyroid tested but if not, I would get that checked too.
I’m sorry you are struggling so much with this and my heart goes out to you. You have a double whammy with both diabetes and celiac which both can make losing weight much more difficult then someone without it. I still think it would be worth checking into trying a different med for the diabetes as well. Do your best to take one day at at time(I know easier said then done!) and work on just feeling as healthy as you possibly can each day. If you’re stressing over your weight it’s going to be more difficult to concentrate on keeping both the diabetes and celiac in check. Don’t beat yourself up over this! You have a lot you’re dealing with…so be gentle with yourself.
Thanks for your good words. I hope you are feeling good!
Yes, I had the blood work done, but the gastroenterologist was so fast to do it and did not listen to me when I told him I had been gluten-free for awhile. I had been talking with a gastroenterologist at a hospital I work at and he mentioned that if they did bloodwork or even the biopsy and I was gluten-free, it could cause a false negative. So my negative blood work is just a waste of a test. I want to have it done at another time, but the Celiac Foundation suggests one eat wheat for about a month prior to doing it.
That means living on Immodium. I can take 3 Immodium and it won’t even affect me, I have so much motility.
I don’t buy the prepackaged foods as most of them have grains in them, or dairy. I pretty much cook from scratch.
I will check into that soy sauce replacement you suggested. Sometimes, if I want to spice things up, I use ginger and some wasabi powder. The paste had dairy in it.
I wouldn’t feel so bad about all of this if I lost weight. Then all the sacrificing and such would be worth it bececause I would be thin and healthier!
You may be correct. I might be not using up enough calories.
I am going to try increasing my exercise.
I have days where I am called in all night, then I want to sleep all day, then I get called in again, so I miss getting exercise because sleep becomes paramount.
I am going to have to reduce my portions and such. When I am at work, I can’t eat too well. People stuff a granola bar or things like that, me, it has to be meat or vegetables. I am going to have to get creative and figure something out. I woke this morning and my blood sugar was 144.
I don’t think my body can tolerate any form of carbohydrate at all. I noticed when I only eat meat, my blood sugar is below 120. As soon as I eat vegetables or fruit, it goes up. I can’t eat grains, so I am not getting that much carbohydrate.
When I say “fruit” I mean some berries or an apricot. That could be all the carbohydrate I will have all day, and it will cause my sugar to go way up.
I did some thinking about this “calories in, calories out” thing.
It seems this applies to people with normal bodies.
Remember we don’t process glucose and our cell sensitivity is down, so we do not use the fuel like a normal person does.
I was doing one full hour of exercise per day, and that did not affect my weight.
When I say exercise, I don’t mean “Curves” or any of those social things. I walked and ran for a full hour. I did uphill walking and really got sweaty.
This is driving me nuts. I am hungry, so I will not eat, but then I am hungry. I am trying to cut my calories.
If I say I can’t lose weight, people tell me I am either eating too much, or I am eating too little. There is no achievement here. I thought I was eating a pretty basic amount of food a day.
I know when I was younger, to lose weight, I had to go to bed with my stomach growling to lose any weight. There was no comfortable eating level. Maybe I need to do that now.
All I had today was a hamburger, about one pound of meat, so before you say that is too big, that is ALL I had. No bread, no bun, no cheese.
I have had dietitians criticize me and say I am eating too much meat, but I can’t eat much of anything else. So am I supposed to eat one egg and that is it? They are no help.
Twix, I don’t have an answer for you (I do not lose weight easily either)…but I want to say I’m happy to see you back here! I missed your posts after early spring and worried about you.
