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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Weight Gain
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I have gained twenty pounds with my diagnosis and have heard of this happening to others. What's the cause? :(

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I have gained twenty pounds with my diagnosis and have heard of this happening to others.  What's the cause? :(

<{POST_SNAPBACK}>

When were you diagnosed? I hate to tell you this, but celiac disease can cause weight gain for some. I know, I'm now 40lbs. overweight. I am losing it at the maddingly slow rate of 1 lb a month. I think it has something to do with the malabsorption - the body has been starved of nutrients, goes into super slow metabolism mode to keep itself alive, but doesn't switch back after the diet has been changed. Maybe that's a farfetched theory, but it, hey I haven't heard of any others. But a serious answer is that if you are eating gluten-free flour-based products, they are LOADED with calories. The substitute flours are denser, heavier and therefore pack a whole lot more calories than your regular wheat based products.

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I have gained twenty pounds with my diagnosis and have heard of this happening to others.  What's the cause? :(

<{POST_SNAPBACK}>

Hi. This is my first time on this message board, but the whole purpose for me looking on it is because of weight gain. I was diagnosed with celiac disease in April this year (4 months ago!!). Since then, I have gained 13 pounds and I can't seem to lose any of it! In fact, I only seem to inch upward, little by little. I'm so frustrated! I don't eat nearly what I used to before I was on a gluten-free diet. I feel like I'm hungry all the time and I feel completely deprived of all the wonderful foods I used to love. Now, to top it all off, I've gained all this weight. HELP! Any suggestions besides starving myself even more and exercising like a crazy person? Healthwise, I feel better since going on a gluten-free diet, but mentally, I'm major bummed!

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From what I understand, our celiac disease diagnosis at a biological level means there are billions of bad bacteria/flora in our intestines and are thriving on the processed crap we continue to feed our bodies, whether gluten-free food or not. I have only had success with the specific carbohydrate diet. gluten-free alone only put more pounds on, but I am a different person now with this diet.......

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From what I understand, our celiac disease diagnosis at a biological level means there are billions of bad bacteria/flora in our intestines and are thriving on the processed crap we continue to feed our bodies, whether gluten-free food or not.  I have only had success with the specific carbohydrate diet.  gluten-free alone only put more pounds on, but I am a different person now with this diet.......

<{POST_SNAPBACK}>

I looked into the scd but it won't work for me - fruit juices of any sort aggravate my ulcer in a major way. I've come to terms with the weight - I am not a number on the scale or size of clothes. I'm moderately active, BP is 110/72, resting pulse 64, my bad cholestoral could be lower, but my high density is great, my overall ratio is fantastic. My doctor believes that part of my excess weight is the celiac disease and lets it go. He knows I'm not thrilled with the extra weight, but if I'm otherwise healthy and active and staying gluten-free, he's not that concerned with it. In other words, I think that there is more to my life than focusing on the scale. I don't binge or snack like I used to, but the weight still won't come off, so there I am.

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Weight gain after going gluten-free is VERY common because you start absorbing things. I gained 70 pounds in two years (30 pounds of that was OK). Still should shed 20 of it.

richard

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From what I understand, our celiac disease diagnosis at a biological level means there are billions of bad bacteria/flora in our intestines and are thriving on the processed crap we continue to feed our bodies, whether gluten-free food or not.  I have only had success with the specific carbohydrate diet.  gluten-free alone only put more pounds on, but I am a different person now with this diet.......

<{POST_SNAPBACK}>

What is a specific carbohydrate diet? I've never heard of it.

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What is a specific carbohydrate diet?  I've never heard of it.

<{POST_SNAPBACK}>

Oh gosh does that freak me out to hear how much you have all gained. I have been on this diet since May and I gained about 10 pounds and lost 3 so far...although I live off of vegtables and fruit and that is about it. I feel so helpless. The thing is I use to be very over weight and I worked for a long time to lose the weight! I got to my goal weight and about a year later I get this disease and now I am gaining it all back again! I dont think I have the strength to be that big gir again when I worked so hard to lose it all! I can not do that again.

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lembry-

The specific carbohydrate diet (SCD) is a very, very strict obviously gluten-free diet that basically doesn't allow you to have any processed foods, starches, or anything with disaccharides. What is left to eat, you ask! Only the healthiest of fruits, vegetables, cheese, meats, yogurt.... if you want to know more you can visit www.breakingtheviciouscycle.com or just ask me. I am an avid supporter of this diet. Please look into it.

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I was pretty thin before celiac disease - about 118 lbs (I'm only 5'3ish). I got up to about 148 at my heaviest (before being gluten-free), but now I'm more like 130 (I've been gluten-free for nearly 2 yrs now). I feel healthier than I've ever been, but I definitely don't look like one of those stick-thin models. I'm quite curvy and I kinda like my new figure, but I still go up and down a bit.

I had a hard time with the weight gain at first. Eating gluten-free helped me feel healthier, but the weight didn't start coming off until after I started taking vitamins.

I don't have enough self-control to do the SCD. I just have to watch myself. I mainly stick to meats and veggies. I feel really good when I do that. The gluten-free breads and pastas tend to slow me down. But I can't go as strict as what the SCD calls for.

I'd like to know what other gainers are doing to lose weight - besides the SCD. More power to you people. :D

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As a gainer myself, I also had hypothyroid and since getting that straightened out, I have lost +/- 10 lbs. I just try to fill myself on all of the fruits and vegetables I want, but I make sure I eat protein at every meal and dairy (yogurt for me!). I eat dinner at around 5-6 everyday and don't snack after that. I drink about 100 oz of water a day and I am an athlete, so I exercise all of the time.

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I never lost weight... even having diarrhea for months and months. Since going gluten-free I've gained about 30!! My DD's doc told her people with celiac disease either lose weight or gain it. She got the wt. loss part, I didn't.

I can't seem to get it off either... so I'm stepping up my exercise in a big way hoping that'll help! If I'm not lighter, at least I'll be in good physical shape.

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It sounds like most of you gained weight AFTER you became gluten free. My daughter is gaining weight as a sympom of being gluten sensitive. We're starting the diet tomorrow.Has this happened to anyone?

Ana

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It sounds like most of you gained weight AFTER you became gluten free. My daughter is gaining weight as a sympom of being gluten sensitive. We're starting the diet tomorrow.Has this happened to anyone?

Ana

<{POST_SNAPBACK}>

I gained 15 pounds over the last two years despite working out 5 days a week and watching what I te. I even kept food diry with calories because I thought maybe I was eating more then I thought I was. I just started the gluten-free diet so I am really hoping it helps.

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I lost 30 pounds in the 3 months before I was diagnosed, due to malabsorbtion (I was having diarrhea 20-30 times a day). I thought well, if I'm going to be this sick, at least I'm losing weight (I need to).

After I was diagnosed and went gluten free, I gained all of the weight back. :(

My Gastroenterologist was thrilled. He said that meant I was retaining the nutrients.

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I gain weight easily with carb-loaded foods, esp. since being gluten-free - I think it's partly because the gluten-free versions of wheat foods are carb heavy, but also because I'm actually absorbing them now. I keep weight off and feel my best when following a paleolithic style diet, ie: just meat, veggies, eggs and a little fruit and a small amount of nuts/seeds. After the first few days of carb/sugar cravings are over with, I reach a mental 'high' (ketosis?) and my appetite self-limits and I just feel great! :D I'm 5 4 and currently 115lbs - I drop to 112 when I'm strict about my diet and bloat to 120 when I'm not. I feel that I'm *incredbly* carb senstivie. I can shoot up or down 5lbs a week, depending on the amount of fruit I eat!

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lembry- 

The specific carbohydrate diet (SCD) is a very, very strict obviously gluten-free diet that basically doesn't allow you to have any processed foods, starches, or anything with disaccharides.  What is left to eat, you ask!  Only the healthiest of fruits, vegetables, cheese, meats, yogurt.... if  you want to know more you can visit www.breakingtheviciouscycle.com or just ask me.  I am an avid supporter of this diet.  Please look into it.

<{POST_SNAPBACK}>

What are the advantages to that diet? I don't have Celiac, but suspect some intolerance or sensitivity, and I've always been underweight and am really trying to change that. Thanks.

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Hi. This is my first time on this message board, but the whole purpose for me looking on it is because of weight gain. I was diagnosed with celiac disease in April this year (4 months ago!!). Since then, I have gained 13 pounds and I can't seem to lose any of it! In fact, I only seem to inch upward, little by little. I'm so frustrated! I don't eat nearly what I used to before I was on a gluten-free diet. I feel like I'm hungry all the time and I feel completely deprived of all the wonderful foods I used to love. Now, to top it all off, I've gained all this weight. HELP! Any suggestions besides starving myself even more and exercising like a crazy person? Healthwise, I feel better since going on a gluten-free diet, but mentally, I'm major bummed!

I am right there with you. I have been gluten free since May 2010 and have gained 25 pounds. My GI doc says that I need to exercise for an hour every day and watch what I eat. I do that and I am still inching up on the scales. It seems that I read somewhere that your body is so in shock that it holds on to every thing it gets due to being deprived for so long. I don't know if I buy that but I do know that I have to watch my diet closely and apparently that is not enough. Please inform if you get a good answer, I am frustrated too :(

I have considered a nutritionist, but I know that is expensive so I do as much research as I can to find healthy low fat low calorie gluten free foods but I am still packing it on. Wish I could be of more help.

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    • Weird Reaction
      Hi Richard Glad you are feeling better!   Sorry - DX is an abbreviation for diagnosis.   Thanks so much  for the info about MSG, broccoli and IBS.  Like you say, there is v. little bad press about broccoli. My aunt, who is a farmer's wife, put forward another theory that it might not have been the broccoli itself but rather some insecticide a farmer sprayed on it.   I just can't bring myself to try organic broccoli however...  Thankfully cauliflower is fine.  I just can't figure it out as I thought they were the in the same vegetable family?  So maybe it is MSG. Regarding anemia, there can be a link with iron anemia and anxiety. http://www.livestrong.com/article/471225-iron-anxiety/ And I was definitely breathless before my diagnosis; I remember finding myself  walking up a hill behind a  huge crowd of friends on a church walk, and many of them were at least 20 years older than me, and wondering why I was in last place! My B12 levels were very low at DX and I found B12 supplements helped enormously with anxiety.   I remember drinking Berroca and feeling so much better within hours of drinking it, on more than one occasion, before even understanding the link. I have just been told however that I can't take any more iron because my hemoglobin is on the high side - so it is worth getting your levels monitored if you wish to supplement as one can have too much of a good thing - to much iron is dangerous. I hope you continue to feel well.      
    • Weird Reaction
      Thank  you Flowerqueen and Cristiana for your replies. I'm actually feeling much better today. I got my appetite back yesterday lunchtime (a few hours after I typed the original post) and managed to keep in/hold down some chicken and lettuce!!! I also had a "fat" coffee (as I call it) before work with MCT Oil and butter (your probably going "yuk" right now but it's really nice...really haha) and started feeling a bit better after that. The nausea went away almost immediately after that although just the thought of having all that fat nearly made me sick but I just wanted to get back to normal asap. I usually have a lot of fat in my diet anyway which is normal for me so the coffee choice isn't unusual. Plus it was also the third day which was when I started feeling better after the first time. I didn't eat til lunchtime and I was good and hungry by then so I knew I was coming out of it. That nausea and trembling feeling is something I don't want ever again. I think after the workout and tearing down muscle tissue (which is a form of stress) and then not being able to hold the nutrients in for repair affected my nervous system. My theory only but to me it makes sense. Although Vitargo also comes in flavors I always get the Natural / Unflavored one so the barley is the only ingredient. As for there being something wrong with that particular batch, well, you be on to something there. Also I'm not knocking the product because as I said, I have used it before and it did exactly what it was supposed to do. But, I will never have it again. Cristiana, my last blood test revealed I had slight anaemia which really surprised me with the amount of red meat I've eaten during my life and the anxiety thing is also new as I'm usually a happy, positive person. Life is good but after this recent reaction I think it is an indirect cause of the glutening. I'm also surprised at how sensitive I've become to it and how quickly. Also what is DX? I also follow a FODMAP eating plan (I can give you more info if you haven't heard of it) which also eliminates certain foods. It's a plan directed mostly at IBS but is well worth looking into if you are suffering any gut health, digestion issues or any ailment you may have which you can't get to the bottom of. Broccoli was one of the foods which I have cut back on and I've eaten HUGE amounts of broccoli so it is a superfood for some but apparently not for others. (I even think I read somewhere it has MSG naturally in it) It's hard to find any bad articles on broccoli so this also really surprised me. It also answered a few other questions I had. Many, many thanks again to you both for your replies. It actually settled me just reading them. I'm glad I found these forums so I don't think i'll be a stranger around here for long.   Richard
    • Confused
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    • Silent Celiac or Non-digestive symptoms
      Oh, you might learn how to tell if you had been glutened.  I just had anemia as my main symptom.  I did not have any tummy issues at all.  I was in shock when my doctor even suggested testing me for celiac disease!   Glutenings can vary as we are all different.  For some it is just a few days, others a few weeks and others months (that would be me).  My last official glutening as supported by follow-up antibody testing lasted for three months.  Guess what?  I had vomiting, abdominal pain, the works!  Funny how celiac disease can change and evolve over time.   Welcome to the forum!  Have some patience and learn all that you can.  The good news is that you can feel better and no medications are required!  
    • Confused
      Thank you for the information. I've been not sure if I should eat gluten or not right now. Dr. said I should watch what I eat when I emailed him the question. My symptoms aren't very bad (I understand that doesn't matter for celiac disease), so I can definitley tolerate the food. But I have been starving myself the last few days due to not knowing what the heck is going on. Thanks again.
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