The traditional look of celiac disease was an underweight person. However, a large minority (39%) are now found to be overweight at diagnosis.
A woman with a history of struggling to lose weight is diagnosed with celiac disease. After starting the gluten-free diet she loses 50 lbs in less than a year…seemingly without effort. A middle-aged man who has never had issues with his weight is diagnosed with celiac disease, adopts the gluten-free diet and begins to pack on pounds and doesn’t know why. A young man loses over 20 lbs in less than 3 months and reaches his ideal weight after going gluten-free.
These are true stories – in fact the last one was mine.
Some people gain weight before diagnosis of celiac disease and lose it after adopting a gluten-free diet. Others gain weight after diagnosis.
This begs an obvious question. Why do some people gain weight from celiac disease before starting the gluten-free diet and some after?
The simple answer is because celiac disease makes your body malnourished and sick and depending on the type of sickness and the nutrients that are missing, weight gain will result.
Overweight Yet Malnourished
Here’s how it works. In celiac disease, intestinal damage occurs that interferes with digestion and absorption of nutrients.
This does not mean you absorb no nutrients at all. You frequently have a situation where you absorb some nutrients just fine and others hardly at all. For example,you might absorb vitamin C, but not B12. So, you eat what you think is a balanced diet, but you only absorb certain things. That makes you hungry for the missing nutrients…setting up cravings. Your body needs those missing nutrients and wants them.
Undigested nutrients that are not absorbed are then dumped into the colon where bacteria ferment them into short chain fatty acids which are then absorbed into the body and stored as fat because the body doesn’t need all that energy. For example, if unabsorbed proteins are fermented in the colon, the body will get the protein for use in muscle repair or enzyme production or hormones. Instead it will receive energy, in the form of fatty acids, in greater amounts than the body needs.
In effect, you have a situation where you are overweight, yet malnourished. You are sick, but the sickness is masked by a body that looks like it is overfed.
What happens if you force your body to exercise when you are malnourished?
Exercise will become exhausting if you are not absorbing energy from carbohydrates, thiamin needed for metabolism, proteins for muscle building and repair, or the minerals needed for strength like calcium, magnesium potassium and selenium, or energy is not delivered because red blood cells are unhealthy. Your workouts will be unproductive. You will use up nutrient stores that your body desperately needs, faster than your body can replenish them, so your body will shift into starvation mode and your metabolism will decrease to conserve nutrients. Injuries may occur as nutrient starved parts malfunction. Illnesses and infections will increase. Once you stop exercising, you will gain weight because you will no longer be burning up fatty acids that are still being produced by bacteria in the colon.
What happens if you limit your calories to lose weight when you are malnourished?
Dieting, like exercise, exacerbates malnutrition. As you try to limit foods in order to lose weight, you set yourself up to be hungry all the time. When your will fails, and you increase your food intake, you will gain weight because your metabolism has slowed. If your will is very strong, you may possibly create a situation where tissues, organs or entire body systems begin to malfunction.
Edema – a.k.a. Fluid Retention
Edema is another factor in celiac disease that leads to weight gain. Gluten causes inflammation that can be localized to the intestine or body-wide. Inflammation leads to edema, also called fluid retention. Edema, is characterized by excess extracellular fluid volume and marked by weight gain, coarsening of facial features, thickening of subcutaneous skin and swelling of lower limbs in the case of vitamin C deficiency. In non-celiac gluten sensitivity reactions, edema results from direct damage to tissues by gluten and immune system reaction to get rid of it. In celiac disease, edema results from inflammatory response and nutrient deficiencies of copper, EPA, protein, thiamin, vitamin C and vitamin K.(Recognizing Celiac Disease p. 176) The intestines can become grossly swollen, leading to an enlarged abdomen or pot-belly look.
Edema can easily be mistaken for fat. A person will look fleshy, but this type of weight gain is neither fat nor muscle. It is retained fluid due to ongoing inflammation and/or nutrient deficiencies.
Gluten-free dieters who lose 7-10 pounds in the first week or two, lose the weight because the swelling decreases, not because fat is being burned. As the inflammation decreases, the fluid is released…your jawline becomes defined and your clothes fit better.
What You Should Do
If you have cravings that drive you to overeat – or if you have a balanced diet, your portion sizes are appropriate, yet you are gaining or cannot lose weight, visit the Glutenfreeworks.com Symptom Guide. Look up your symptoms to see if they correspond with celiac disease. If they do, then ask your physician to test you for celiac disease. Weight loss may be as easy as eliminating gluten from your diet.
If you have gained weight after starting the gluten-free diet and you are not overeating or you have cravings, then you may wish to take a “nutrient deficiency identification and correction” approach to your diet. Correcting nutrient deficiencies heals your body. As your body heals, it begins to function properly and your weight normalizes.
Identify your health symptoms and determine which nutrients you might be lacking. Then add more of the foods high in those nutrients to your diet. Be sure to keep track of your total caloric intake, so as not to overeat.
Recognizing Celiac Disease is a reference that can help you identify and correct missing nutrients. It lists hundreds of health issues related to celiac disease, which nutrient deficiencies cause them, and dietary sources highest in those nutrients. While it is not weight loss book, per se, people find when they look up their symptoms and start adding the missing nutrients to their diet, their cravings go away and they lose weight (or gain it if they were too thin).
This strategy works. I know a woman who lost 110 lbs in 10 months, and was able to be taken off bipolar and schizophrenia medications – just by identifying her symptoms in the book and correcting the nutrient deficiencies causing them. She removed the source of her problems – gluten – and as her body received the nutrients it needed and became healthy, the weight melted away.
If you are diagnosed with celiac disease, ask your doctor to test you for vitamins A,D,E,K, B12, folic acid and minerals calcium, phosphorus, iron as the NIH recommends. Pay close attention to where you fall in the range on the test results. What is low, but acceptable, for some may be too low for you. I saw this in a man who suffered from anemia symptoms, even though his iron levels were within acceptable range for most people.
Tips
Stop the Cravings. If you crave gluten, you are craving the amino acid, glutamine, which is richly present in gluten. Unfortunately, gluten resists digestion and the undigested fragments of gluten can have a morphine type effect that tricks the brain into thinking it is getting the glutamine it needs. When the effect wears off, you grow hungry again. Choose foods that contain glutamine – eggs, fish, meats, cabbage, beets, beans, spinach and parsley to satisfy gluten cravings.
Balance those Bacteria. Probiotics can help. Most people with celiac disease have dysbiosis, or an imbalance of intestinal bacteria. Dysbiosis will stop you from digesting properly or metabolizing energy well. You can get a bacterial overgrowth (of the bad bacteria) that covers the intestine, again interfering with absorption, or an overgrowth of another pathogen, like candida albicans, – which will make you crave sugars. Probiotics add back the good bacteria you need to protect your intestinal lining and help you digest and absorb nutrients.
Improve Motility. Try flaxseed meal, 1 tbsp taken at night mixed in a glass of water. Flaxseed is high in omega-3 fatty acids and soluble fiber and will help with gut motility. I say take at night, because taking fiber with meals can interfere with digestion and absorption of nutrients. (Fiber can bind the nutrients and
carries them out of the body.)
Correct Acidosis by Eating Citrus. Citrus fruits like grapefruit and lemon brings up your pH levels and stops the acidosis that leads to inflammation, dysbiosis and poor digestion and absorption of nutrients.
100% GF. Make sure your gluten free diet is 100% gluten-free. 1mg daily has been shown to cause intestinal damage in some people. Most people seem to tolerate up to 25mg – but that’s an 8th of a tspn. So, if you’re eating a cookie during the week or sipping a low carb beer, you are not gluten-free.
Exercise. Try limited exercise to begin. As you correct your nutrient deficiencies and your body grows stronger, increase the amount. Walking is a great way to start. Weight training is excellent for building muscle and cardiovascular health at the same time. Yoga and pilates are perfect for building strength and flexibility.
Personal Note
I am proof positive that healing yourself and meeting your nutritional needs will help you lose unhealthy weight and gain lean muscle mass.
My results: 25 lbs weight loss over a period of 3 months and then 5 pounds increase in muscle – maintained almost 6 years now.
Before: I was 185 lbs and was killing myself at the gym 5 to 6 days a week. I could barely bench press my weight and my bloated body looked more like a sausage than the chiseled look I was shooting for. This picture was taken on June 21, 2003, before I went gluten-free.
Now: I weigh 165 lbs at 5’9″ – with a 42” chest and a 32” waist. I can bench press 250 and am in better shape at 35 than I was at 25. This picture was was taken March 31, 2009.
Note: This article was first written in April, 2009. In October, I was in a car accident where I suffered a sprained neck that stopped me from exercising. Even without steady exercise over the Thanksgiving and Christmas holidays, I only gained 3 pounds. Here is a picture of me – taken today January 22, 2010.
I changed my life – you can too!
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“Author Information: John Libonati, Philadelphia, PA
Publisher, Glutenfreeworks.com.
Editor & Publisher, Recognizing Celiac Disease.
John can be reached at john.libonati@glutenfreeworks.com.”
i have been diagnosed with cd since 1999 which then i was 90 pds. i now wiegh awhopping 170 pds. which is horrible. enerything in these artiles fit me. from the vitmins to food.to excersizze. i joined the gym 2 months ago and gained 10 pds. i will now take this info to a dr. specializing in cd. thankyou for the info. i will follow it to finally get better
Its interesting to see what other people are experiencing. I am about to start cutting gluten out of my diet due to a possible diagnosis of CD. It seems to me, eating gluten free is not a ticket to eating all the gluten free products out there which are if not more full of calories and sugar. I also noticed that a lot of gluten free products have soy in them which can be just as bad for some people and may be the reason there is difficulty with weight loss. Soy wrecks my stomach. I am no expert, but guessing clean eating is the way to go and eat a light portion of the allowed grains.
I was recently diagnosed w/CD. I complained to my doctors since Nov 2009 that something was wrong they all said, eat less, exercise more. I gained 10lbs in one weekend of vacation. No matter how much I exercised or how little I ate I wasn’t losing weight.
I had a lot of fatigue. I was so tired that I would sleep 12 hours at night and still need an afternoon nap. My husband said I was nuts.
Finally and endocrinologist looked at the labs and figured out what was wrong in one appointment. I thought it was hypothryoidism, and was shocked when he told me CD.
I started immediately on the lifestyle and have notice a small improvement. I have done a ton of research and unlike any other diet i’ve done before there is no cheating on this time.
I am glad that someone else was overweight to start with, it gives me hope. Everything I have read up until this point says diagnosed people are underweight and lacking essential nutrients. I am lacking nutrients just not the weight.
Hey Stephanie – it could be due to a variety of factors: sugar, grains, inflammation, portion sizes, exercise (too much or too little). Come join our Weight Control group on Gluten Free NetWorks so others can help out. http://network.glutenfreeworks.com/groups/weight-control/
I am completely frustrated with the gluten free diet. I have been gluten free for 16 months after being diagnosed with CD and have gained at least 10-15 lbs, which is a lot considering i am 5’2″. I eat healthier than ever before, exercise regularly and am heavier than ever. I just don’t get it. I am to the point I would rather ditch the GF diet to just lose the weight. I can’t stand feeling fluffy!!!! Please send any helpful advice that you might have!
My first month off gluten I gained 10 pounds – because I was gorging myself on GF goodies, LOL, reassuring myself that there were such things.
I lost 15 pounds the second month and have continued to lose, and at four months off gluten, am wearing the sizes I wore 10 years ago.
I’m really annoyed at my doctors for telling me all my problems were caused by my weight–it was ME who diagnosed my celiac disease, and made them test for it “to rule it out”. (I tested off the chart.) And now it turns out that my weight was caused by celiac disease. I’m pretty sure it was because I was absorbing calories, but not nutrients, and therefore craving food all the time. I used to eat non-stop some days.
Now I not only just want to eat when I’m hungry, sometimes I find myself stopping in the middle of a meal because I’ve realised I just don’t want the rest of it, no matter how good it is or how much I paid for it. I just…don’t want any more food. I’m full, I’m done, that was enough!
Can’t tell you how much I love shopping in the regular stores again.
I am so glad I found this website! I have seen a GP (3 times) GYN, and endocrinologist. I have had every blood test under the sun, pelvic ultrasound, and abdominal CT. (I gained about 20 pounds in 3 months with no change in diet or exercise, and I am 54 and postmenapausal.) All the tests showed how healthy I am, with the exception of thyroid antibodies, which showed I have slight case of Hashimoto’s Disease (with no treatment ordered).
Anyway, I finally went to a nutritionist and told her my story. She suggested that I get a Celiac panel done. (Previous research on Celiac’s revealed that only weight loss was a symptom, not weight gain.) Lo and behold I have “early Celiac disease” and my doctor suggested a gluten free diet! I started 2 weeks ago and am a bit frustrated because I haven’t lost a pound! I am keeping a food diary and am eating approx. 1500 calories a day (per my nutritionist). Last week, I played soccer three nights (an hour and a half each) and do weight training 3 times a week. Am I doing something wrong or will it just take time to get rid of this weight? Any hints are welcome!
I am typical. Bloated before Celiac Diagnosis. I thought I’d lose it went I went GF. HA! GF products have MORE sugar and fat, but I ate it anyway. Since diagnosis nearly 5 years ago, I gained over 10 pounds. Mostly around the middle. I found myself experiencing shortness of breath, fatigue and of course constantly trying to find something comfortable to wear.
I joined Weight Watchers on Jan 8 of this year and I’m learning to eat GF in a healthy way. I’ve lost only about 6-7 pounds since I decided “enough,” but I’m feeling GOOD and have already lost a big portion of the roll on my belly. I’m wearing clothes I could not wear a year ago.
I do exercise as well. There’s no starving on weight watchers…just learning how to make better choices, and be willing to not eat all of something. Lots of fruits and vegetables have made a huge difference.
I hope this is helpful.
I too have been diagnosed for over two years and still can’t loose the extra six pounds. I’m very frustrated! Please let me know what I can do!! Where’s the article that everyone’s talking about! thx
dude Its so hard to find some help for new celiac patients pertaining to sports and training… Ive looked all over but everyone kept telling me Ill get fatter after I go gluten free but I train like crazy now and am still slightly over weight… hopefully it works out the same for me like it did for you… thanks a lot dude
Great article with useful tips. Thanks for sharing. I’m feeling inspired!
I am so frustrated. I was diagnosed with Celiac disease 6 months ago and have been 100% gluten free since then. I have gained 35 lbs in the last two years and cannot lose an ounce. I am bloated all of the time and my body resists any time I start to lose a pound or two. I take a multi, vitamin D, B-12 and folic acid because I was dangerously low in all of those. I don’t know what to do to make me lose weight. Any suggestions??
Thanks John for information ,like all other posts i have had the same weight problems ive always thought that gluton foods where making me hold water weight around my middle arms and legs ,just looked bloated all the time,ive just had another celiac blood test ,i have so many of the symtoms and yet when tested two years ago the test was negative,ive told my husband this time regardles of blood result im getting all gluten foods out of my diet ,am just 60 and i go to the gym 3 times a week ,i was being told it was just my age ,regards sue
HI JOHN,
THANKS SO MUCH FOR YOUR ARTICLE! I AM A CELIAC AND I HAVE TRIED FOR THE LAST SEVERAL YEARS TO LOSE WEIGHT. I KEEP ADJUSTING MY DIET AND HAVE FOR MONTHS AT A TIME GIVEN UP ALL SUGAR AND EXERCISED LIKE AN IDIOT. MY MOST SUCCESSFUL STINT WAS OVER FIVE MOS-I LOST A TOTAL OF SIX POUNDS. I WAS SO DISCOURAGED. I EXERCISED FOR 2-3 HRS EVERY DAY AND WEIGHED AND MEASURED EVERYTHING I ATE FOLLOWING THE WEIGHT WATCHERS POINT SYSTEM.
ANYWAY I FOUND YOUR ARTICLE PRINTED IT AND SHARED IT WITH MY FAMILY-FOUR OF US ARE CELIACS-THEN I LOST IT AND NO ONE ELSE COULD FIND IT. I HAVE HAD EVERYONE ON HIGH SEARCH ALERT FOR THE LAST MONTH. NOW THAT I HAVE FOUND THE ARTICLE I AM SHARING IT WITH MY DOCTOR AND I AM HAVING HER RUN THE TESTS YOU SUGGESTED.
YOUR ARTICLE IS THE FIRST ONE I HAVE READ THAT EXPLAINS WHAT MIGHT BE GOING ON WITH ME. THANKS SO MUCH FOR THE HOPE!!
Thank you, Thank you, Thank you.
Hi Charity,
I had EXACTLY the same thing. In the gym 5-6 days a week until I looked like a sausage. I didn’t realize I was actually burning up my muscle and my body was not absorbing enough protein to replenish it and build.
You are going to love your results! Make sure you eat a nutrient-dense diet. Here is a gluten free diet guide. Go easy on the high cal/nutrient poor gluten free snacks. You’ll be craving breads, candies and such. Meats, eggs (especially as they’re easy to digest – eat white and yolk together), fruits, veggies, beans, nuts… you get the idea. Give yourself a couple months. Too optimize your diet, try dropping cow’s milk products and cane sugar. Replace with goat or sheep cheeses and use honey to sweeten instead of sugar.
I am a gym junkie and have eaten a well-balanced diet for ages. In contrast, I’ve always been sick and have been getting worse in recent years – with a laundry-list of symptoms. The latest, oddest symptom is my muscle atrophy. I have, over the last couple of years, lost any muscle definition (not that I ever had much). The ridiculousness is, I weight train regularly and take high-intensity dance classes 4 times a week. Everyone else in my dance classes has lost every last bit of excess fat and gained gorgeous, defined muscles. In contrast, I gained a pant size and am flabbier than ever. I was diagnosed with Celiac a few days ago and the doctor explained that my arms, legs and abdomen were swollen with water retention, not fat. She also explained that the inflammation caused by eating gluten has destroyed my intestines’ ability to absorb protein – the protein needed to build muscle. I am hoping to not only gain health with my new gluten-free life, but I also hope to gain muscle and the ideal body I spend so much time working for.
John, just want to thankyou for the great blog. I have recently tested positive for Celiac’s and am waiting for biopsy. I had a beautiful baby girl in August and actually gained weight after the pregnancy!! My family doesn’t understand that exercise is nearly impossible because I was also diagnosed with Anemia at the same time and they think I am lazy. I am not lazy just tired all the time! I am so glad to hear that the weight gain is normal and hopefully can be quickly reversed after consultations with a dietician. Thanks for sharing both your knowledge and your story, it inspired me deeply and made me realize that there is a light at the end of what has been a very long, very dark tunnel.
John, I am so happy I read your blog. I am not gluten intolerant however I need a lifestyle change. My daughter may have Celiac and needs further testing. My sister has Celiac disease and ever since she has gone gluten free her life has changed for the better. My daughter and I are going gluten free and after reading your story and information I feel more inspired to do so! Thank you John!
I’ve gained 10 pounds all around the mid section since diag. and gluten-free a year ago..UGH, any suggestions?? I used to be able to just starve for a week and it would leave, NOT anymore..
While some people report an initial gain as the body works to replace nutrients it has been missing, usually things level off. Have you met with a dietitian? They can review your diet to see how to tweak things to make sure you get the nutrients you need while maintaining the appropriate caloric intake. Other issues that can affect weight gain are probiotics, acidosis, cadida albicans overgrowth and medications.
I am one of those people diagnosed with Celiacs Disease who has gained weight. I have gained 80 pounds in the 2 years since my diagnosis. Any suggestions to get it off quickly? I am walking every day for at least 30 minutes and trying to do more than that when I have time.
Thanks!
Karissa
I eat gluten-free processed foods but I try to keep my diet balanced and overall healthy. Gluten will make me gain 4-6 pounds in a day or so as my body reacts and becomes inflamed. The weight gain is due to the fluid retention. It takes two weeks or so to resolve. So you can see if you’re eating gluten on a regular basis, you will be in a constant state of inflammation. It’s no fun…
I also want to know what your diet consists of? Do you eat gluten free processed foods? If you eat something with gluten by accident, how will that affect your weight loss? Does it set you back a lot?
Thank you for this information! It makes so much sense to me now! I was recently diagnosed with celiac disease and am not fat, but overweight. Previously I was excercing 5-6 times a week to p90x and never really saw a change. Now that I am learning to be gluten free, I want to try it again. Also what you said about craving gluten is so true! I did for about 2 months once I went gluten free.
P.S You look really hot!