I just came across this newsletter from the University of Chicago Celiac Disease Center. The e-newsletter, Impact, is published quarterly.
I especially enjoyed the headline article: “The Problem of Weight Gain in Adults with Celiac Disease”. This is an issue that may be on the minds of many people with celiac disease. Many of us were used to eating large quantities of food and not gaining weight. Once we begin the gluten free diet and our intestines are repaired we begin absorbing all of the food we are ingesting. This can cause us to gain weight.
Unfortunately, the only way to avoid this weight loss is to cut back on the calories that we take in and/or increase the amount of activity we engage in. The problem as I see it is psychological and it may be hard to overcome. Depending on how long you were suffering from celiac disease and were undiagnosed, you may have a hard time giving up the large quantities of food you were eating. Also you may have an unconcious feeling that you will “starve” of you don’t eat. I think these feelings are common and you need to find a way to change your thinking.
Becoming more active is a good move in all cases, as long as you are physically able. If you are eating to feed your active body you may be able to overcome some of the previous mindsets.
Check out the newsletter for some good tips and good luck keeping your weight under control.
You know it was the other way around for my husband. Since going on a GF diet in November he has dropped 19lbs. Our only explanation is his body held onto everything it could because he wasn’t getting good nutrition and now that he is eating properly, his body is actually acting normally and absorbing what he needs it is letting go of the excess fat.
That is interesting. In some classes I’ve been to at CD conferences it has been noted that the medical community is seeing more patients with CD who are overweight and even obese. I learned that only 25% of the cases are the “classic” underweight patient. I hope your husband is doing well. Good luck. ~Kathy
I was diagnosed in Oct 2007 and have lost close to 40lbs. I think I was a “fat” celiac, which I feel probably delayed my diagnosis by years despite all my other symptoms, the stereo type even among MDs is the rail thin celiac.
Like PO’s husband I suspect my weight gains was due in no small part to my failure to absorb nutrients from the food I ate–I was ALWAYS hungry. Now I find that I am very satisfied with smaller portions and much less interested in constant snacking.
As an added bonus, my blood pressure has lowered considerably with the weight loss, it wasn’t super high per se, but it was headed toward borderline hypertension. It is now runs around 119/60 (v.s. 135/85 previously).
Whichever way your body goes, I think it’s important to pay attention and nurture yourself with wholesome and tasty GF food and plenty of rest and pleasurable excercise. Whatever you do don’t make any of it punishment or it will all become overwhelming and the frustration and resentment will be too much.
Best of luck to anyone making this difficult but neccessary life change, you can do it. You will do it. In a matter of months, as you start to feel better, the feelings of deprivation will beging to subside. They have for me, and I never believed it was possible.
Thanks for sharing your experience. It is good to get information out for people who may be suffering from gluten intolerance. As the last two comments show, there are many different presentations of celiac disease. ~ Kathy
Hey, thanks for posting!
I have totally been struggling with this as of late.
I used to be “that person” that never gained weight, and I ate HUGE quantities of food! Well…. since going GF almost 3 years ago, that has definitely changed.
I feel like I’m starting to get it under control fairly recently, and the only thing that appears to work (after trying a few diets) is really just eating less calories, and less carbs. I used to eat 2 baked potatoes for dinner, with carbs at every single meal.
Now, I’m cutting that down, and maybe not having carbs at every meal (although I’m eating small meals throughout the day), and it’s really been helping. I still indulge in whatever I’m craving of course, but try to counter-balance the craving, with something healthy. And of course, I’m exercising regularly…
Unfortunately it’s going to be a struggle forever, and never easy, but at the end of the day, I’m eating better & I think it will be good in the long run….
Allie, I know exactly how you feel. I remember the days when I’d have 2 servings of oatmeal for breakfast.
It is hard to change habits but with work you can do it. I still struggle with it, too. It’s worth it to feel better, though.
Thanks for writing. Kathy
Great post!! I always was very thin, never exercised, and ate whatever I wanted. After being diagnosed with Celiac Disease and going gluten free, I gained 20 pounds. My body was finally absorbing food (which was a good thing), but I was unhappy with my weight gain. I started exercising regularly and eating “healthier” gluten free foods and lost the weight. I feel healthier and stronger than I ever have in my entire 35 years
i got diagnosed 6 months ago. was one of those who could eat all day and never put on a pound. i was 5ft9in 140 soaking wet at age 40. always lifted weights and ate shakes etc to get bigger but it never worked. got to about 146 when i was 28 or so but that was my heaviest. got to be such a joke that when 12 of my buddies had a 3 month weight loss contest i got into it, except i had to GAIN weight to win! halfway tru the contest i got diagnosed ( routine doc visit and annual visit noted anemia. sent me to a gastro just in case and he was smart as i said my sister had celiac and he did a biopsy and badabing!) and long story short i went from about 137 to 154 in 7 weeks and won the contest! and i am still always always hungry and i never feel full. i think my insides have healed and now they are in a super effecient manner. i was always itchy all the time and that went away. and probably the best thing is i had really really bad restless leg syndrome ( ever since i was a kid) and within a week of going gluten free and taking some iron supplements it has vanished. if u ever had RLS u would know how good it feels to now sleep! sorry to run on but if u happen to be i philly in late september the Flyers ( greatest hockey team ever!) are having a gluten free iron chef competion on 9/24. the owner of the Flyers, Ed Snider, was diagnoded after like 30 years of not feeling good and he , obviously, is quite an advocate for us celiacs ( as well as many other charitable causes, he is a great guy)
cheers!
Mark
Thanks for sharing, Mark. I think it helps people to know what others have gone through. It’s just great that you’re feeling better. I’m glad you got diagnosed. My son was diagnosed at about 24 years old but he wasn’t suffering too bad. He’s doing very well, an active windsurfer and surfer.
The competition sounds cool. I’m in Idaho so I don’t think I’ll be there but hopefully it will have a good turnout. –Kathy
This is so shocking since I’m 45 years old and found out that I have celiac disease on September 2, 2008. Been on gluten-free since Sept 2nd and I noticed that differences before and after the diagnostic. I now always hungry and never get full! I’ve always been thin and never really gained weight except my three pregnancies, but lost it right away after each birth. I do still get tired, but I am now taking gluten free vitamins and calcium. Since I went untreated, I have asthma (shortest of breath), thyroid problems (under control) and probably bone problems….will have bone density test tomorrow.
I just wish the doctors will check anyone for celiac disease when they think it is IBS.
Treece
Treece, I’m glad you’re getting a bone density test. My bone density went up about 7% the first year on the gluten free diet but it was so low to begin with I still have osteoporosis. Now I’m taking Boniva. Bone density is one thing that you can’t get back at our age. Don’t be too worried, though, you can work on it through diet, supplements, weight-bearing exercise and possibly medications if those aren’t working well enough. Good luck. ~Kathy
Thanks Kathy! I’ll do anything for my bones. I have taken Fosamax before. I won’t be surprise if I have to take it again. I am going to call the doctor to get the results since I don’t have to see my primary doctor until Feb 2009.
Unbelievable, I still get hungry and never full!! I noticed that my hunger is so strong now since been on gluten free diet.
Treece
Hi again………..got the bone density results……it has improved!!!!! YEAHHHHHHHHH!!!!! They told me to repeat the test in 2 years.
Treece
That’s great news, Treece!! Keep it up! Kathy
Looks like some help may be on the way! Although I don’t think I could ever see myself going back to having gluten. But this looks like its working , at least in the testing so far.
Alba Therapeutics Presents New Data for Larazotide Acetate at the 2008
American College of Gastroenterology Annual Scientific Meeting
Study Showed Larazotide Acetate Prevented Immunologic Changes Induced by Gluten in Patients with
Celiac Disease
http://www.albatherapeutics.com/Portals/0/pdf/Press%20Release%20from%20the%203%20ACG%20Posters%20October%207%202008.pdf
well i am so frustrated i could scream. i found out i was celiac in April 07. i thought maybe now i will start to lose weight. boy was i wrong. i haven’t gained that much weight but i just cant seem to lose any thing. i probably eat a little to much at times but over all i eat pretty good. i have a feeling i am not alone. all my celiac friends are in the same boat. sometimes it feels so hopeless.
I was diagnoses with Celiac disease in May 2008 … shortly before my 68th birthday… I worked hard on being gluten free. In September when the weather cooled … I started experimentation with gluten free baking … and gained 10 pounds. I upped my time in the swimming pool … I was already swimming 3 hours a week to 4 hours weekly.. I have bad knees and many forms of exercise are no-nos for me.. I leveled off and even took off a couple of those pounds… Then did some holiday baking I’ve put on another 10 pounds.
Now my knees are screaming… I seem to be craving something
I’m hungry all the time… no I take that back I am not hungry in the morning… but after my first bite of food for the day… I eat/graze from then on … drinking water and eating low calorie veggies… have no impact on this gnawing hunger…
I know my muscle tone is better … I am hoping that some of the gain is in my bones… but I can see this big belly developing extra pouches of fat..
Guess my question is this… what are some low impact ways of excercising ( my skin will take no more time in the pool) that will BURN calories… my knees are not up to any ‘machine’ I tested at the local gym…. I did a little dancing around the living room last evening and could barely get out of bed this morning…
Hello Karli. I think walking is a really good form of low impact exercising. You may need to start out with small distances and work up. Try going for a walk everyday. I walk to do errands, mail and store, etc., and get two things done at once. Dancing is fun but you may need to start out slowly. If you do too much at once you will get sore and be discouraged.
Good luck adding exercise slowly to your routine and keep swimming. Have you tried bicycle riding? It is very low impact. Lifting weights is good, too, because you add muscle and burn more calories with more muscle. You need to start out slow and with light weight. Try a good gym with staff/trainer who can help you.
I know what you mean about being hungry. Before I was diagnosed I had to eat all the time and it is hard to get out of that habit. I think the best solution is to really listen to your body and figure out if you’re really hungry or just eating out of habit. I find that if I eat a good lunch I am not as hungry and I don’t snack as much.
Kathy
Hello, I was diagnosed with CD in August 2008. I seem to keep gaining weight even though I don’t eat that bad. I always feel hungry. It is so frustrating. I just do not know what to do.
Rebecca, I know it can be frustrating. Are you getting some exercise? Try keeping a diary of everything you eat for a few days and add up the calories. Some gluten free manufactured foods can be very high in calories and fat. Look at some nutritional eating web sites and see if you can find some hints that will translate well to a GF diet, like this one: http://www.webmd.com/diet/default.htm. Good luck and don’t give up! ~Kathy