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Weight Gain Since gluten-free/some Good Advice Needed


penny-s

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penny-s Newbie

I have alot of post regarding weight gain/loss on gluten-free diets, I as well fall under the weight gain category. I don't eat hardly any pastas, I eat no bread. My diet consists of protein, from animal meats and beans, minimal fresh vegetables, some dairy, and very little fruit. My exercise is very minimal due to getting up early, working all day and into the early evening, contending with a 4 yr old, housework, etc. I am not a night person so I go to bed rather early because of my early start in the mornings. I read that someone does an email weightloss for Celiacs, if that person is reading I would love to get the link. I am only a few pounds over weight but I feel terrible. I initially losed a bunch of weight when I went gluten-free, plus I did a 30 day detox and lost more, since then I have gained it all back and then some. I dislike any of the rice pasta's and have yet to find a bread that is "tastey" and doesnt cost a fortune. I have found that my food bill has exploded since being gluten-free. Luckily I found a tastey pasta made of corn, but I fear that eating the corn could be what is putting weight on. My acupuncturist told me that corn puts alot of weight on woman around the mid section of their bodies--I have to believe her now. I hope someone can chime in on some advice for me. I am feeling rather frustrated since I am getting re-married next month and cant lose the weight.

For those who say this lifestyle isn't hard---bless them because where I live it's very difficult. Eating out does not occur, unless I eat salad. Oh Yippee!!! That would be great if I were a vegetarian, or vegan, but I am not, and to get meals specially cooked it cost a small fortune. So I make alot of my own meals, but as stated above time is limited so I can't prepare a ton of food ahead of time.

I sure hope someone has some really good advice for me. OH yes I have joined a celiac group but I only get newsletters because I can't make the meetings due to having to work, and this group is the only one in the area.


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tiggsy Newbie

Most celiacs do NOT lose weight on a gluten free diet, in fact many gain as their body is able to digest stuff that used to go straight through...

Losing weight is a matter of getting your metabolic rate up and not eating too many fatty foods (as these are higher in calories, a measure of the energy content).

The easiest way to get your metabolic rate up is to do 45 minutes of heartbeat raising exercise every 72 hours. You don't need to do it more often, as the rise in metabolism lasts that long.

You can eat steak at restaurants. That is my fall-back. A steak, a few fries and whatever veg goes with it (hold the battered onion rings). I could also have an omelette, but I make those at home when I'm in a rush, so I don't eat them when I'm out.

daphniela Explorer
I have alot of post regarding weight gain/loss on gluten-free diets, I as well fall under the weight gain category. I don't eat hardly any pastas, I eat no bread. My diet consists of protein, from animal meats and beans, minimal fresh vegetables, some dairy, and very little fruit. My exercise is very minimal due to getting up early, working all day and into the early evening, contending with a 4 yr old, housework, etc. I am not a night person so I go to bed rather early because of my early start in the mornings. I read that someone does an email weightloss for Celiacs, if that person is reading I would love to get the link. I am only a few pounds over weight but I feel terrible. I initially losed a bunch of weight when I went gluten-free, plus I did a 30 day detox and lost more, since then I have gained it all back and then some. I dislike any of the rice pasta's and have yet to find a bread that is "tastey" and doesnt cost a fortune. I have found that my food bill has exploded since being gluten-free. Luckily I found a tastey pasta made of corn, but I fear that eating the corn could be what is putting weight on. My acupuncturist told me that corn puts alot of weight on woman around the mid section of their bodies--I have to believe her now. I hope someone can chime in on some advice for me. I am feeling rather frustrated since I am getting re-married next month and cant lose the weight.

For those who say this lifestyle isn't hard---bless them because where I live it's very difficult. Eating out does not occur, unless I eat salad. Oh Yippee!!! That would be great if I were a vegetarian, or vegan, but I am not, and to get meals specially cooked it cost a small fortune. So I make alot of my own meals, but as stated above time is limited so I can't prepare a ton of food ahead of time.

I sure hope someone has some really good advice for me. OH yes I have joined a celiac group but I only get newsletters because I can't make the meetings due to having to work, and this group is the only one in the area.

What are you drinking? If soda, that will make you gain weight. You have to watch your liquid calories too. All I drink is water and iced tea and occasionally 100% juice. I have lost weight. I also eat mainly vegetarian with only meat at dinner. Sometimes I even eat vegetarian at dinner. I eat things like spaghetti with zuchinni and no meat, vegetable lasagna, and beans and rice dishes. I also have tried quinoa. The brown rice pasta is good. When I do eat meat, it is usually chicken or turkey. Hamburger on occasion as a treat. You have to let yourself have things you like to eat or you won't stick with it. I let myself have candy bar. I eat 3 Muskateers cause its lower in fat and calories. Chocolate covered fruit. Think of it as a lifestyle change not a diet. Cause you will gain the weight back if you go back to your old eating habits.

Penny-M Newbie
Most celiacs do NOT lose weight on a gluten free diet, in fact many gain as their body is able to digest stuff that used to go straight through...

Losing weight is a matter of getting your metabolic rate up and not eating too many fatty foods (as these are higher in calories, a measure of the energy content).

The easiest way to get your metabolic rate up is to do 45 minutes of heartbeat raising exercise every 72 hours. You don't need to do it more often, as the rise in metabolism lasts that long.

You can eat steak at restaurants. That is my fall-back. A steak, a few fries and whatever veg goes with it (hold the battered onion rings). I could also have an omelette, but I make those at home when I'm in a rush, so I don't eat them when I'm out.

thanks for your reply back, however I don't eat steak, never could get myself to eat red meat other then hamburger as long as it's freshly ground from the butcher, I pretty much only treat myself to shrimp scampi over rice, at least that I know is safe. I truly believe I have a metabolism problem, and I think that is my next step. As for exercise of any kind that is out right now due to dr's orders, because I have achilles tendonitis as well as something else going on with my feet. I am waiting for more test results to come back.

Penny

Penny-M Newbie
What are you drinking? If soda, that will make you gain weight. You have to watch your liquid calories too. All I drink is water and iced tea and occasionally 100% juice. I have lost weight. I also eat mainly vegetarian with only meat at dinner. Sometimes I even eat vegetarian at dinner. I eat things like spaghetti with zuchinni and no meat, vegetable lasagna, and beans and rice dishes. I also have tried quinoa. The brown rice pasta is good. When I do eat meat, it is usually chicken or turkey. Hamburger on occasion as a treat. You have to let yourself have things you like to eat or you won't stick with it. I let myself have candy bar. I eat 3 Muskateers cause its lower in fat and calories. Chocolate covered fruit. Think of it as a lifestyle change not a diet. Cause you will gain the weight back if you go back to your old eating habits.

I drink a ton of water and herbal tea's, I don't drink soda too often, I do drink some flavored seltzer on occasion. I eat alot like you, vegetarian meals during the day and a meat meal at night. Unless I take leftovers to work from the day befores suppper. I make zucchini bakes with rice, now that the zucchini is ready for picking. I eat pasta maybe 1-2 times a week. I do not eat fried foods alot unless it's my infamous fried potatoes but even those are pretty healthy. I find myself eating alot of beans-refried beans, garbonzo beans, green beans, etc. My weakness is potato chips. I really think I have a metabolism problem and that is my next step with the dr. Unfortunately my current dr just left town and so I am in search of a new dr and I am rather frustrated seeings how this will be my 5th dr in the past 3 yrs. I am tired of rehashing everything and having the new dr do all the same test I have already been through. I have done that and I am not going through it again. I am lucky in the aspect of having insurance that allows me to see whoever I want without referrals. At least for now, I think that will change come next year. Who knows it could be due to my age, I am in my 40's and I know my mother and sister ballooned when they hit 40. Maybe it's genetics. Whatever the reason is I am not liking it and I am going to fight it every step of the way.

Thank you for responding I truly appreciate the feedback

AliB Enthusiast

I beg to differ on the fats issue.

Try reading Gary taubes' 'Good Calories, Bad Calories'.............

Contrary to popular opinion, many, both professional and lay people are coming around to realising that it is not fat that makes you fat, but carbs.

In the laws of thermodynamics it is not what you take in, but the kind of food you take in and how the body uses it. The body burns fat as fuel far more efficiently than carbs.

As I often illustrate, you only have to look at the Inuit. Their diet consists of raw and cooked fish, meat and blubber(fat). They eat little or no carbs of any kind, yet they are fit and healthy and do not suffer with our 'Western' diseases. Their diet consists of as much as 50% fat or more in the form of animal fats and fish oils. It is calorifically very high yet they are not fat.

The body stores carbohydrates in readiness for 'famine' or the lean Winter months, but of course neither the 'famine' nor the lean Winter months ever come in our carb and sugar-laden Western diet. Not only that but we eat a huge amount of the stuff. Never before in human history have we ever eaten the quantity that is now consumed, neither has it been highly processed and adulterated (and rendered nutritionally devoid) to the nth degree. Some of it not only doesn't provide the body with any nutrition but it actually robs the body of valuable nutrients!

There are, of course, bad fats. Trans-fats, hydrogenated and heated vegetable oils (ever tried to scrape the fat off a fryer? Just imagine what that is doing to your insides!) are best avoided, but animal fats, butter, ghee coconut and olive oil are good fats and can be safely heated without turning into something evil. Fish oils and cod-liver oil are good sources of Omega oils and essential fatty acids - elements that are now recognised to be very necessary.

The body needs fats and oils. The brain is made up of something like 60% cholesterol and without enough fat the body can't make enough cholesterol for repair and rejuvenation. There needs to be cholesterol in the bloodstream. It is used to repair damage in the arteries.

I post on a low-carb forum. Many are saying that when they have gone low-carb, low to medium protein and higher fat not only have they lost weight (even though they are actually having a lot more calories), but their blood sugars have stabilised and lowered in the case of those who are Diabetic or borderline (which would also help those who suffer with hypoglycemia because they are triggered by the same thing - too many carbs) and their cholesterol levels have readjusted to much better levels.

I have really reigned in my carbs and try to keep them under about 40gms per day with most coming from fruit and veg (not starchy veg like potatoes, parsnips or more than a small amount of carrot), cooked and raw. I have also upped my fat intake and am drinking more water. The weight is starting to shift again.

Another plus is that the higher fat intake has resulted in me no longer craving the carbs and sugar or having the urge to snack and because I am no longer eating 'dead' carbs and my body is able now to get the nutrition it needs from the good food I am eating, I actually need less food. The more nutrition we can get from our food the less food the body actually needs.

Logical ain't it! Shame I never realised it years ago..................

It is really quite liberating................

shirleyujest Contributor
thanks for your reply back, however I don't eat steak, never could get myself to eat red meat other then hamburger as long as it's freshly ground from the butcher, I pretty much only treat myself to shrimp scampi over rice, at least that I know is safe. I truly believe I have a metabolism problem, and I think that is my next step. As for exercise of any kind that is out right now due to dr's orders, because I have achilles tendonitis as well as something else going on with my feet. I am waiting for more test results to come back.

Penny

What about swimming? Easier on the joints/connective tissue and you're not putting weight on your feet. Just an idea. Regarding diet, you said you eat minimal veggies and fruit. I eat a lot of both, from 3 - 6 cups a day of fresh/cooked. I use convenience, eg bagged romaine lettuce & pre-cut veggies which are pricier but it's a healthy indulgence bc I eat more if don't have to chop. You obviously have a very hectic lifestyle w/work and a 4-yr-old and your feet challenges going on. Can you cook big batch of healthy foods on weekends eg pasta sauce w/lots of veggies, casseroles and soups then freeze in portions to pull down during the week when you're zonked. I make chicken soup from a rotisserie chick from groc store, using boxed broth and add onion/veggies/rice; tastes homemade but cheat a lot. ;) Upping the proportion of veggies/fruit and enjoying carbs but in limited quantities is easiest way to change diet w/o rethinking everything. Can you invest in a food processor to cut prep time? Cooking from scratch is only sure way to be gluten-free, I just got glutened this week from potatoes in a local cafe.


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shirleyujest Contributor
What are you drinking? If soda, that will make you gain weight. You have to watch your liquid calories too. All I drink is water and iced tea and occasionally 100% juice. I have lost weight. I also eat mainly vegetarian with only meat at dinner. Sometimes I even eat vegetarian at dinner. I eat things like spaghetti with zuchinni and no meat, vegetable lasagna, and beans and rice dishes. I also have tried quinoa. The brown rice pasta is good. When I do eat meat, it is usually chicken or turkey. Hamburger on occasion as a treat. You have to let yourself have things you like to eat or you won't stick with it. I let myself have candy bar. I eat 3 Muskateers cause its lower in fat and calories. Chocolate covered fruit. Think of it as a lifestyle change not a diet. Cause you will gain the weight back if you go back to your old eating habits.
t sin

3 Muskateers is also my treat. I rarely ate them before but read here it's a gluten-free candy and I;ve had one almost every day for 2 months now and love it. That's my only dessert, rest of diet healthy so w/that regimen I've lost 4 pounds. Could lose a few more still but NOT giving up my candy bar. B)

shirleyujest Contributor
I drink a ton of water and herbal tea's, I don't drink soda too often, I do drink some flavored seltzer on occasion. I eat alot like you, vegetarian meals during the day and a meat meal at night. Unless I take leftovers to work from the day befores suppper. I make zucchini bakes with rice, now that the zucchini is ready for picking. I eat pasta maybe 1-2 times a week. I do not eat fried foods alot unless it's my infamous fried potatoes but even those are pretty healthy. I find myself eating alot of beans-refried beans, garbonzo beans, green beans, etc. My weakness is potato chips. I really think I have a metabolism problem and that is my next step with the dr. Unfortunately my current dr just left town and so I am in search of a new dr and I am rather frustrated seeings how this will be my 5th dr in the past 3 yrs. I am tired of rehashing everything and having the new dr do all the same test I have already been through. I have done that and I am not going through it again. I am lucky in the aspect of having insurance that allows me to see whoever I want without referrals. At least for now, I think that will change come next year. Who knows it could be due to my age, I am in my 40's and I know my mother and sister ballooned when they hit 40. Maybe it's genetics. Whatever the reason is I am not liking it and I am going to fight it every step of the way.

Thank you for responding I truly appreciate the feedback

Maybe when you have a craving for pot. chips (it could be the salt and crunch you're drawn to) eat some salted nuts or seeds? I eat blue diamond roasted almonds w/sea salt. Nuts have fat but it's the kind your body needs. It sounds like you're on the right track talking w/your doc... maybe get some nutritional testing? Sometimes vitamin deficiencies cause us to eat more. HTH

happy2bme Newbie

...

happy2bme Newbie

Its frustrating to have to add unhealthy items to gain weight. Keep on going on the testing and I wish you the best. I recommend parasite testing done in a stool test as well. Feel lucky. Not only are my child and I gluten intolerent but we also cannot have soy, dairy, potatoes,zuccini, eggs, rice, corn, most beans besides garbanzo and mung, any fruit or sugar, red meat and tomato sauce. Also no alternatives to grain. Drinking chicken broth and adding our favorite veggies sometimes throughout the day helps us keep on the weight. Lots of chicken. Maybe you could try cassava chips, rice crackers and gluten free cerials with almond, hemp or rice milk if you can have them. Some cardio is great as well. Oh and make sure you are totally gluten free. It can be hiding in bulk nuts and other grains, yellow mustard is a no no unless you buy a rice vinegar one. Many say they are gluten free because of the way it is processed but I have heard a lot of people who still had issues. I would stay away from going out to eat as well. Outback Steak House, PF Changs and a few others have a gluten free menu but many people have more sensitivities than they realize and other things may be adding to the problem??? Goodluck to you. =)

  • 2 weeks later...
RESO Apprentice

I really think I have a metabolism problem and that is my next step with the dr. Unfortunately my current dr just left town and so I am in search of a new dr and I am rather frustrated seeings how this will be my 5th dr in the past 3 yrs. I am tired of rehashing everything and having the new dr do all the same test I have already been through. I have done that and I am not going through it again. I am lucky in the aspect of having insurance that allows me to see whoever I want without referrals. At least for now, I think that will change come next year. Who knows it could be due to my age, I am in my 40's and I know my mother and sister ballooned when they hit 40. Maybe it's genetics. Whatever the reason is I am not liking it and I am going to fight it every step of the way.

Hi Penny,

As far as getting a new dr., make sure your old dr. sends your records to the new one, that way they will have all the info. In fact, insist on it so you don't have to deal with that, you have enough to worry about.

Have you had your thyroid tested? Hypothyroid and celiac go hand in hand, from what I have been told. That could cause the weight gain.

Good luck and I hope you feel better soon,

R

celiac-mommy Collaborator

I don't know if I'm the one you were referring to, with the weight loss info. I have helped out a few people here in the past and I do have a whole work-up of what I did to lose 100# and keep it off. I would be happy to share it with you as well, but-not to offend at all (!!!)-I don't think it will be what you're looking for. Exercise is a big part. Not just for the weight loss, but for mental well being also. I'm not talking about joining a gym, just moving (and sweating!!) 30-60 minutes a day, 4-6 days a week. I have 2 kids (4 and almost 8), I work full time and I get up an extra 30-60 minutes, depending on the day, to get my workout in. I'm like you, I'm not a night person and I like to go to bed early. As far as what we eat, I am (husband too) about 90% raw and vegetarian. I eat fruit all morning, have veggies of some sort with a sprouted corn tortilla and some avacado for lunch with an olive oil based dressing if I have a salad or a salad with a BIG handful of raw nuts and raisins. I usually have fruit and 70% chocolate for an afternoon snack and fish with more veggies for dinner, and amazing hot chocolate made with almond milk, Dagoba chocolate and honey (it DIVINE!!). I have read the book Raw Food Detox Diet and it's amazing. I hate HATE to use the word "diet" because it really has to be a lifestyle change forever, but you have to go easy on yourself and expect to have those nights where you eat whatever the hell you want (!!) and start over the next day. My husband wanted to read this book, he was referred by a friend, and I was totally supportive, because he needs to lose about 70#. I said I would be his cheerleader and do it with him, and I can honestly say, I've never felt better, had more energy, and I didn't think I needed to lose any more weight, yet I've lost 8# without even trying-and I'm eating ALL THE TIME!!! If I can help with anything or you want me to email you my weight loss plan, let me know, I'd be happy to help.

Erin Elberson Newbie

The bottom line is calories in vs calories out. You say you are fairly inactive, so chances are your calorie needs are fairly low. A fried potato here, a 3 musketeers there, shrimp scampi (which is loaded in butter), they add up. Research has shown that people underestimate their food intake by 50%. More than likely it's not a metabolism issue, although it could be, it's an issue of eating less and moving more. Not an easy answer, I know, but there is no magic pill or bullet.

A couple quick suggestions:

-If is has more than 3 ingredients don't eat it. Keep food as whole and unprocessed as possible. If it doesn;t have a label (ie;fruits, veggies, meats, potatoes) that's a good start.

-Write down what you eat. Every bite, if it goes in your mouth, it counts. Portion size is a huge (literally) issue in the US. Consider weighing your food, or at least become familiar with actual serving sizes.

-Do not drink any caloric beverages. None. Lots of water, tea, coffee. If you add milk or cream to your coffee be prepared to measure it and account for it in your daily calories.

-Eat plenty of lean protein-chicken, fish, lean red meat, eggs/egg whites, lowfat dairy

-Keep portion sizes under control especially with carbs like quinoa, oats, rice

-Monitor fat intake, esp trans fats. Healthy fats like nuts, olive oil, OK in small amounts

-Watch for caloric condiments like salad dressings, mayo, BBQ sauce. Get creative with mustards and vinegars, fresh and dried herbs, lemon and lime juice, garlic, for flavor

-Move. Walk. Stand. Get it in somehow. Expend some energy.

-Keep healthy food easily accessible and available so you have it when you are hungry.

Hope this helps, I know it's alot. Main thing is just to start. Make changes as you can, and keep moving forward.

Good luck!

Aellaraven Newbie

When I went gluten-free 5 years ago I gained about 20 pounds in one month, but since I had lost 35 lbs when undiagnosed I guess the 20 lb gain wasn't so bad. It just happens so quickly. I don't know anyone who loses weight when gluten-free because when we're undiagnosed, our metabolism slows right down and we are not taking in any nutrients/minerals. I was highly symptomatic and reacted very badly to gluten for 3 years before being properly diagnosed, so I lost 35 lb off my 6'1" frame...I was skeletal. So I gained the weight right back and I had to rush to eat healthy again. Eventually diet and weight balance if you eat enough veggies/fruit (I force myself to eat these since I do love carbs).

Also, exercise is key. I HIGHLY suggest PILATES! You work your core and stay off your feet. I got in shape post-diagnosis with pilates and biking. I love the Gaiam series with Ana Caban - check it out!! It works wonders, and each workout is only 30 minutes.

About the fries with steak from a previous post - every celiac who is sensitive should stay away from deep-fried foods at restaurants. Fries are usually deep-fried with other flour items (like onion rings) and the gluten stays in the oil and gets on the fries, or they are all tossed together. Also, some oils contain beek stock which has wheat in it, like McDonald's fry oil. And usually oil is filtered (poorly) and reused, so you can't be sure the oil is gluten-free. So I always get chicken (or other meat), veggies, and fruit bowls when eating out. I've never had trouble custom-ordering at any restaurant...always ask for chicken and salad, even when it's not on the menu (like at pasta restaurants). ;) You'd be surprised how accomodating restaurants are when they want your money!

Good luck with your health! We've all been there and next to finding gluten-free food, it's the next toughest challenge! :)

Chuck8268 Rookie
I have alot of post regarding weight gain/loss on gluten-free diets, I as well fall under the weight gain category. I don't eat hardly any pastas, I eat no bread. My diet consists of protein, from animal meats and beans, minimal fresh vegetables, some dairy, and very little fruit. My exercise is very minimal due to getting up early, working all day and into the early evening, contending with a 4 yr old, housework, etc. I am not a night person so I go to bed rather early because of my early start in the mornings. I read that someone does an email weightloss for Celiacs, if that person is reading I would love to get the link. I am only a few pounds over weight but I feel terrible. I initially losed a bunch of weight when I went gluten-free, plus I did a 30 day detox and lost more, since then I have gained it all back and then some. I dislike any of the rice pasta's and have yet to find a bread that is "tastey" and doesnt cost a fortune. I have found that my food bill has exploded since being gluten-free. Luckily I found a tastey pasta made of corn, but I fear that eating the corn could be what is putting weight on. My acupuncturist told me that corn puts alot of weight on woman around the mid section of their bodies--I have to believe her now. I hope someone can chime in on some advice for me. I am feeling rather frustrated since I am getting re-married next month and cant lose the weight.

For those who say this lifestyle isn't hard---bless them because where I live it's very difficult. Eating out does not occur, unless I eat salad. Oh Yippee!!! That would be great if I were a vegetarian, or vegan, but I am not, and to get meals specially cooked it cost a small fortune. So I make alot of my own meals, but as stated above time is limited so I can't prepare a ton of food ahead of time.

I sure hope someone has some really good advice for me. OH yes I have joined a celiac group but I only get newsletters because I can't make the meetings due to having to work, and this group is the only one in the area.

Our lifestyle is hard indeed,but we eat btter than most!A classic celiac will actually gain wight,post diagnosis,dur to the fact that you are now absorbing nutrients.

I dont trust eating out,even if its a gluten-free menu,remember,those COOKS are usually 16-18 yr. olds that want a paycheck,not making sure you havnt been cross-containenated!

Chuck

  • 2 weeks later...
sancan Newbie

penny_s - you aren't alone! I find myself in a similar situation. I have struggled with my weight my whole life - never obese but always "chunky" - and was diagnosed last year after 15 years of incorrect diagnoses. Going gluten free made all my GI symptoms disappear almost overnight but in the following months, I had the typical weight gain as my intestines healed. I suspect that there was some change in my caloric intake as I tried the gamut of gluten-free foods available at various health food stores but otherwise there was no change in my general eating patterns.

So fast forward a year. The 20 pounds gained last year hasn't budged; the doctor and nutritionist both say there's no reason why I shouldn't be losing weight given my eating and exercise habits; thyroid tests come back fine. So, now what? I can't realistically up my exercise as I'm currently training for an Olympic distance triathlon (1mi swim, 24m bike, 6m run) and already train 6-8 hours per week. I can't realistically cut calories below the 1500-1800 per day that I'm consuming without messing up my training. I do my best to get enough sleep, rarely eat anything packaged and don't drink soda.

I don't know what else to do and I'm working hard to accept that I am healthy and should be happy but the closet full of clothes that I fear will never fit me again does tend to depress me.

RESO Apprentice
penny_s - you aren't alone! I find myself in a similar situation. I have struggled with my weight my whole life - never obese but always "chunky" - and was diagnosed last year after 15 years of incorrect diagnoses. Going gluten free made all my GI symptoms disappear almost overnight but in the following months, I had the typical weight gain as my intestines healed. I suspect that there was some change in my caloric intake as I tried the gamut of gluten-free foods available at various health food stores but otherwise there was no change in my general eating patterns.

So fast forward a year. The 20 pounds gained last year hasn't budged; the doctor and nutritionist both say there's no reason why I shouldn't be losing weight given my eating and exercise habits; thyroid tests come back fine. So, now what? I can't realistically up my exercise as I'm currently training for an Olympic distance triathlon (1mi swim, 24m bike, 6m run) and already train 6-8 hours per week. I can't realistically cut calories below the 1500-1800 per day that I'm consuming without messing up my training. I do my best to get enough sleep, rarely eat anything packaged and don't drink soda.

I don't know what else to do and I'm working hard to accept that I am healthy and should be happy but the closet full of clothes that I fear will never fit me again does tend to depress me.

I know how you feel about exercising and caloric intake and not losing weight. While you are training for something like a triathlon/marathon, etc. you should not try to lose weight. You may actually gain a few pounds but don't worry, it's extra muscle and will drop off as soon as you stop training. This is not just my opinion, you can ask your doctor and nutritionist for backup.

Doctor and nutritionist say there's no reason you shouldn't be losing weight? Gee, thanks, that's helpful, right? Do they both know you're training for a triathlon? Every person on my marathon team gained weight, from the 22 year old thin and in-shape vegan soccer player to the slightly overweight woman in her 50s. But, funny enough, most of us lost pants sizes! Forget the scale for now and start measuring your waist, etc. to see if your composition changes. Every person on my marathon team also lost that weight after they quit training at that level.

Good luck with your triathlon, I hope it goes really well! and good luck with everything else too.

Renee

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    • cristiana
      Hi @Scatterbrain Thank you for your reply.   Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct.   Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two, following my diagnosis - I pinned everything on coeliac disease, but it turns out I wasn't always right!  Dizziness, lightheaded - I was eventually diagnosed with cervical dizziness (worth googling, could be your issue too, also if you have neck pain?)  A few months after diagnosis I put my neck out slightly carrying my seven-year-old above my head, and never assigned any relevance to it as the pain at the time was severe but so short-lived that I'd forgotten the connection. Jaw pain - stress. Tinnitus - I think stress, but perhaps exacerbated by iron/vitamin deficiencies. Painful ribs and sacroiliac joints - no idea, bloating made the pain worse. It got really bad but then got better. Irregular heart rate - could be a coincidence but my sister (not a coeliac) and I both developed this temporarily after our second Astra Zeneca covid jabs.   Subsequent Pfizer jabs didn't affect us. Brain fog - a big thing for people with certain autoimmune issues but in my case I think possibly worse when my iron or B12 are low, but I have no proof of this. Insomnia - stress, menopause. So basically, it isn't always gluten.  It might be worth having your vitamins and mineral levels checked, and if you have deficiencies speak to your Dr about how better to address them?    
    • knitty kitty
      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy.  Benfotiamine and other forms of Thiamine do not bother me at all.  There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes.  The sulfur in thiamine is in a ring which does not trigger sulfa allergy like sulfites in a chain found in pharmaceuticals.  Doctors are not given sufficient education in nutrition (nor chemistry in this case).  I studied Nutrition before earning a degree in Microbiology.  I wanted to know what vitamins were doing inside the body.   Thiamine is safe and nontoxic even in high doses.   Not feeling well after starting Benfotiamine is normal.  It's called the "thiamine paradox" and is equivalent to an engine backfiring if it's not been cranked up for a while.  Mine went away in about three days.  I took a B Complex, magnesium and added molybdenum for a few weeks. It's important to add a B Complex with all eight essential B vitamins. Supplementing just one B vitamin can cause lows in some of the others and result in feeling worse, too.  Celiac Disease causes malabsorption of all the B vitamins, not just thiamine.  You need all eight.  Thiamine forms including Benfotiamine interact with each of the other B vitamins in some way.  It's important to add a magnesium glycinate or chelate supplement as well.  Forms of Thiamine including Benfotiamine need magnesium to make those life sustaining enzymes.  (Don't use magnesium oxide.  It's not absorbed well.  It pulls water into the intestines and is used to relieve constipation.)   Molybdenum is a trace mineral that helps the body utilize forms of Thiamine.   Molybdenum supplements are available over the counter.  It's not unusual to be low in molybdenum if low in thiamine.   I do hope you will add the necessary supplements and try Benfotiamine again. Science-y Explanation of Thiamine Paradox: https://hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/#google_vignette
    • Wheatwacked
      Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped.  It sounds more like you are suffering from malnutrition.  Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here.  Malnutrition can cause SIBO, and SIBO can worsen malnutrition. Another possibility is side effects from any medication that are taking.  I was on Metformin 3 months before it turned me into a zombi.  I had crippling side effects from most of the BP meds tried on me, and Losartan has many of the side effects on me from my pre gluten free days. Because you have been gluten free, you can test and talk until you are blue in the face but all of your tests will be negative.  Without gluten, you will not create the antigen against gluten, no antigens to gluten, so no small intestine damage from the antigens.  You will need to do a gluten challange to test positive if you need an official diagnosis, and even then, no guaranty: 10 g of gluten per day for 6 weeks! Then a full panel of Celiac tests and biopsy. At a minimum consider vitamin D, Liquid Iodine (unless you have dermatitis herpetiformis and iodine exasperates the rash), and Liquid Geritol. Push for vitamin D testing and a consult with a nutritionist experienced with Celiack Disease.  Most blood tests don't indicate nutritional deficiencies.  Your thyroid tests can be perfect, yet not indicate iodine deficiency for example.  Thiamine   test fine, but not pick up on beriberi.  Vegans are often B12 deficient because meat, fish, poultry, eggs, and dairy are the primary souces of B12. Here is what I take daily.  10,000 IU vitamin D3 750 mg g a b a [   ] 200 mg CoQ10 [   ] 100 mg DHEA [   ] 250 mg thiamine B1 [   ] 100 mg of B2 [   ] 500 mg B5 pantothenic acid [   ] 100 mg B6 [   ] 1000 micrograms B12 n [   ] 500 mg vitamin c [   ] 500 mg taurine [   ] 200 mg selenium   
    • NanceK
      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well.  I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given this info before taking more of it. 
    • Wheatwacked
      Hello @Scatterbrain, Are you getting enough vitamins and minerals.  Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D.   By the way you should get your mom checked for celiac disease.  You got it from your mom or dad.  Some studies show that following a gluten-free diet can stabilize or improve symptoms of dementia.  I know that for the 63 years I was eating gluten I got dumber and dumber until I started GFD and vitamin replenishment and it began to reverse.  Thiamine can get used up in a week or two.  Symptoms can come and go with daily diet.  Symptoms of beriberi due to Thiamine deficiency.   Difficulty walking. Loss of feeling (sensation) in hands and feet. Loss of muscle function or paralysis of the lower legs. Mental confusion. Pain. Speech difficulties. Strange eye movements (nystagmus) Tingling. Any change in medications? Last March I had corotid artery surgery (90 % blockage), and I started taking Losartan for blood pressure, added to the Clonidine I was taking already.  I was not recovering well and many of my pre gluten free symptoms were back  I was getting worse.  At first I thought it was caused a reaction to the anesthesia from the surgery, but that should have improved after two weeks.  Doctor thought I was just being a wimp. After three months I talked to my doctor about a break from the Losartan to see if it was causing it. It had not made any difference in my bp.  Except for clonindine, all of the previous bp meds tried had not worked to lower bp and had crippling side effects. One, I could not stand up straight; one wobbly knees, another spayed feet.  Inguinal hernia from the Lisinopril cough.  Had I contiued on those, I was destined for a wheelchair or walker. She said the symptoms were not from Losartan so I continued taking it.  Two weeks later I did not have the strength in hips and thighs to get up from sitting on the floor (Help, I can't get up😨).  I stopped AMA (not recommended).  Without the Losartan, a) bp did not change, after the 72 hour withdrawal from Losartanon, on clonidine only and b) symptoms started going away.  Improvement started in 72 hours.  After six weeks they were gone and I am getting better.  
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