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Celiac And Weight Gain
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Since being diagnosed in June and being completely gluten-free, I have gained 8 pounds. This is enough to make many of my clothes too tight to wear. HELP!

This seems the height of unfairness: my diet is severely restricted from things I love, yet instead of losing, I gain! The nutritionist said I should be encouraged that I was gaining - that it indicated my celia were healing and absorbing nutrients. Easy for her to say .... each morning in the closet I begin the Great Search for something to wear.

Can anyone relate? Does this level off or will I lose some weight eventually? I admit that extreme fatigue has limited some of my physical activity, so this may be playing a part. I am an active person who walks the golf course (with a push-cart) three times a week and attends exercise classes 3/week. I am worn out after 9 holes these days - very depressing. It seems a vicious circle.

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What exactly are you eating? If you're attempting to substitute gluten-free processed foods for the foods you used to eat, yes, you will gain weight. However, if you're eating primarily vegetables, fruits, meat, and dairy, perhaps you need to eat more healthy fats. Yes, that's right--healthy fats! They will help you absorb your nutrients better and are extremely important for the proper functioning of your body. You should be including olives, nuts, nut butters, and organic butter (such as melted and poured over cooked vegetables). You may be interested in investigating the paleo/primal diet as many of us here have done. It's a very healthful diet for anyone, but especially for people with celiac. Also, the weight tends to just fall off with this particular diet. There are many sources for learning more about the diet, but I prefer the book, "Primal Body, Primal Mind" by Nora Gedgaudas. There is also a helpful website, marksdailyapple.com that offers a lot of free information and recipes.

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People are different. Many people lose but some do gain. I think it depends on how malnourished you were. If your food was passing without being absorbed that will make a difference. My husband has had in diagnosed celiac for much of his life. He could never get above 145lbs. He wasn't diagnosed with celiac until he almost died from it. He could not eat. It went right through him or he threw it up. He got down to about 110Lbs. His doctor said his one stones were horrid.... No villi at all completely smooth. He went on the die and now 16 months later he weighs and seems to have leveled at 182 lbs.

My son also has it( we checked him because of his dad). He doesn't look celiac at all. Always gained weight easily and at his last drs appt he was 85 lbs. he gained five pounds in two months since his diagnosis. His pediatrician said it is just evident now that even though he showed no signs his body wasn't absorbing as it should ( despite gain a couple of pounds every three months prior to diagnosis, his BMI had been decreasing over the last year....)

Good luck to you just attempt to exercise to balance the new weight gain out.

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I can completely sympathize. When I first went on a gluten-free diet I lost weight rapidly - about 25 pounds - and felt great. Since then, I've gained all that weight back plus some and feel like I have no energy. Since I've gained so much weight while on a restricted diet, I often cheat on gluten-free. I mean, if I'm going to gain weight anyway I might as well have the foods I want, right?

I'm now trying to start back with a serious and strict gluten-free diet but without substituting special gluten-free carbs. I think many people - including my husband and family - have tried to be very helpful by making and buying me Udi's and other gluten-free brands. But many of these gluten-free products are very unhealthy and don't benefit you except to provide a (less than yummy) substitute for carbs. When I first went on the diet I did not buy or use these substitutes and I think that made a big difference in my initial weight loss. It's going to be difficult to convince everyone that I don't want these gluten-free products since they are trying to be generous and conscientious, but I think it's necessary.

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After suffering the symptoms of Celiac for 17 years before being diagnosed, I also jumped drastically in weight after I went on a gluten-free diet four years ago. By the time I was diagnosed in my 30s, I was drastically underweight because I was suffering from severe malnutrition (as my doctor said, I had so few villi that my intestines were akin to pvc pipes), but within six months of going gluten free, I had gained almost 20 lbs. By exercising 6 days a week and watching my diet for the last four years, I have lost about seven of those pounds, which still puts me 13 lbs over what I had grown used to. However, considering that I now have a BMI of 20, I have come to accept my current weight as healthy and "normal" for me now, as opposed to the extreme thinness that I had become used to during the years when my body was slowly wasting. I also bought clothes that fit the new me, which was hard at first, but I have also come to accept that I am no longer the size I once was, and wearing clothes that fit my body makes a huge impact on how I feel about my gluten-free body.

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Hi. I had a colonoscopy 3 years ago when I turned 50. Everything came back negative but I was having a lot of digestive problems. The specialist said "go gluten free". Now 31/2 years later, my symptoms have improved but I still have diarrhea at times and I've lost weight. I am seeing my GP this week, because I'm always tired. I'm taking B12, a multivitamin, Calcium , Magnesium and Vitamin D and a probiotic every day. I eat a good gluten free diet, rich in vegetables, fruit,chicken but obviously I am missing something because I am still tired. Any suggestions?

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"Since I've gained so much weight while on a restricted diet, I often cheat on gluten-free. I mean, if I'm going to gain weight anyway I might as well have the foods I want, right?"

Wrong. Well wait, are you a diagnosed celiac or have gluten intolerance? Because your look on the outside is really the least of your worries if you are a celiac. I guess if you're on Gluten Free: The Fad Diet it's different and you can do whatever you want. Yes, pie crust whether gluten free or not is packed full of carbs. I often find gluten free breads and crackers to have more calories than wheat-baked goods. They're harder to fluff up, and will always be denser.

"The specialist said "go gluten free". Now 31/2 years later, my symptoms have improved but I still have diarrhea at times and I've lost weight"

What else have you been tested for? Why would they tell you to eat gluten free but not test you for celiac disease??? If what you say about your diet is correct and you ARE a celiac, unless you're eating whole chicken, you're not getting any fat in your diet. Red meat is a good for you when you're malnourished. Bring on the liver!

However, I suspect that your omission of what you do to stay totally gluten free implies to me that you are probably still ingesting gluten regularly. Do you eat out? Do you have a shared kitcken? Are you still using pots and pans and wooden spoons and cutting board etc that you still used 3 years ago? Is your handsoap gluten free? Do you change your handtowels in your home after someone who likely had gluten on their hands uses it? Have you ever knowingly cheated? Do you eat products that may contain traces of wheat? Have you tried going dairy free?

In any case, I would definitely go see your doctor and try and get to the bottom of why you don't feel good. It may not be gluten at all.

Annnd, back to talk about the OP. I too have only gained weight and lost/remained at the same energy level as before I went gluten free 8 months ago. Which was pretty low. I'm trying to get my vitamins tested (friggin impossible it seems, only thing anyone ever tests is iron and B12, which are important, but hardly all encompassing!), and apparently I have yet to actually get a proper thyroid panel despite thinking I'd had one twice now, (lying doctors, labs that choose not to do the work the doctor orders because I don't need it for some reason even though I have no idea who these people are...Go Canada, land of the non-existant healthcare.) It's especially annoying because my husband has lost 40 lbs being gluten free with absolutely no effort, and I just gained back weight. In my case though, I've continued to eat like a pig, (many days food is my end-all-be-all) and my excersise has dropped, so there's no surprise why I gained.

In any case, buy some new clothes and excersise as much as your body tells you to. You haven't said your size, but if 8lbs is enough for clothes to not fit, I'm going to guess you're pretty a small person. You may not like your new appearance as much, but I'd trust your nutritionist and take the weight gain as a good sign. Unless you're feeling worse being gluten free, which you might be because your'e more tired now? And, umm, it's not entirely clear in your post, but you don't have extreme fatigue if you golf and excersise 3 times a week. Fatigued, sure, but I'd save the word extreme for those people who are so tired they can be bed ridden.

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And, umm, it's not entirely clear in your post, but you don't have extreme fatigue if you golf and excersise 3 times a week. Fatigued, sure, but I'd save the word extreme for those people who are so tired they can be bed ridden.

I would contest this, as someone who had fatigue as a symptom despite being "active" (exercising regularly). For me, personally, at times I would be able to function OK, and at times I'd have to force myself through the day (more often the latter). And, at times, I would barely be able to function- to the point of struggling to stay awake, or even struggling to stand or move much at all or or think straight. Often I'd start the day off OK and then my energy would crap out severely midway through the day. I would be slammed with brain fog and dizziness and sometimes even be on the verge of fainting. The fatigue wasn't *constantly* at a debilitating level, but it was *frequently* at a debilitating level, and more, it was unreliable when I'd have energy, so it was very difficult to plan to do things, and difficult sometimes to follow through. It sure as heck felt "extreme" to me, and it was sometime scary to the people around me who saw it happen.

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Em314,

I am the same way. But I've been this way for the last 8 years(started around 17). Doctors could never figure out what was wrong. Blood work fine, blah blah blah. Long story short, I've been trying to get my doc to rule out Celiac. What a mission this has been. I will be going gluten free regardless of the outcome at the doctors.

Im so sick and tired of feeling this way. Im pretty much bed ridden, as when I do stuff around the house for a few hours and try to ignore it, I get really sore from standing for too long. My legs swell. I don't do anything with my friends. Grocery shopping is pain atm. Kinda at my wits end.

K, going off topic of the OP. As for weight gain, I've gained plenty-and no gal likes to gain weight. All this gluten to make sure docs realize its the problem and it's ruining my intestines!(sorry I know Im not gluten-free yet, and that's what the post was about.)

The healthiest diet for anyone, gluten free or not, is one full of fresh veggies, fruit, lean meats, nuts, healthy fats, and no processed foods....just like some of the other posters had mentioned. If anyone wants to lose weight, eating nutritiously and exercising is the only way. Don't go "on" a diet, "change" your diet for life. It's a lifestyle change. :)

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While many of us can use some improvement on our diet (we all have our goodies, don't we?), I think sometimes we forget there's more to it than food and exercise.

Celiac is an autoimmune disease. They don't know what NCGI is, exactly, but I assume like AI diseases, it affects more than just one body system.

AI is tough on your body. Lots of us are dealing with more than one. AI stresses adrenals and messes up hormones. When those are out of whack, most people gain weight. And as we age, it's naturally harder to maintain or lose weight.

Yes, as we heal we gain weight because we absorb nutrients (and bad stuff too). We may have to adjust our diet. Again. We may also have other issues to deal with like balancing hormones, sugar levels, getting adrenals to function normally, addressing and properly treating thyroid issues....the list goes on.

Many of us develop bad exercise habits while dealing with AI symptoms, because we feel crappy and exercise is beyond "normally difficult". It takes hard work, good luck with medical care and research and healing, sometimes, to help us get to the point where we can achieve "normal" energy levels.

And at the end of the day, we're all different. We all have those hurdles. It's a journey, definitely.

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
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