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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.

Lightweight To Begin With
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10 posts in this topic

Hi gang,

So one of the things that tipped me off to my gluten intolerance was that I lost about 15 lbs in about 6 months. I'm not a big guy to begin with - 5'6", normally 115-120 lbs.

To those of you that lost weight - how long did it take to get it back? I'm not the most patient person in the world, so I'm just trying to keep from getting frustrated.

Thanks guys!!!!

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I lost about 40 pounds in only 3 months, going from 200 to 160. I was very concerned with my weight loss and in a hurry to put the pounds back on after going gluten-free, becoming obsessed with how many calories I was eating during the day, writing it down and trying to get myself to eat more day after day. Nothing changed and I was frustrated and still not feeling all that good. Then I read on here about how important it was to focus on my proteins and not calories. Since then I have put away the notebook and try not to worry about my weight. In the matter of days I felt alot better, had more energy and started to see things in a more positive way. I am more happy now then I was at 200 lbs. and can build my body up in a much more healthier way, I see it almost like a second chance. So don't stress about the pounds you lost, focus on what kinds of things are good for your body and make you feel good, The rest will take care of itself. I am up 5 pounds since my new approach and have this forum to thank for it. I am no expert but things will get better.

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Then I read on here about how important it was to focus on my proteins and not calories.

Pure and simple the above is the answer. If you have can, opt for all natural/organic proteins. And, by all means, the leaner the better:

- Low fat/Non Fat Yogurt

- Lean turkey breast

- Fish

- Low fat chicken sausages

- Pork tenderloin

- LF cottage cheese

- Egg whites

You'll get back up there!

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I also lost a great deal of weight after getting sick, going down to a bmi of 14. I didn't gain weight (after trying everything else) until I went on an elimination diet (which included eliminating gluten.) Beware of the possible "hypermetabolic mode" that some of us go through. Basically, your metabolism rate might shoot up such that no matter how much it seems like you're eating, you won't gain weight right away.

So, I was eating 3000-4000 calories a day for a while and didn't start gaining for 2-3 weeks. Don't get discouraged!:) Oh, and keep in mind that you need some extra protein to rebuild your tissue; however, your body prefers burning calories from fats and carbs. I never could gain weight on a low-carb diet; I never would make it passed the hypermetabolic mode.

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Thanks guys!! I'm just getting tired of answering "Have you lost weight?" when I go to church every week. "Yes, I know, I look skinny. No, it's nothing I can't treat or deal with. Yes, I'm going in the right direction." Got the answer down pat! I think I'm going to get a T-Shirt made up that says "I've lost both weight and gluten, and never felt better!" ;)

I've definitely been focusing on protein, trying to get it in each of my 3 meals everyday. Lean chicken (love the meat from Whole Foods!), nuts, etc.

jelina - Thanks for mentioning the "hypermetabolic mode." Never really thought about that. I've always had a high metabolism to begin with (not sure if there was a relation to gluten), so it probably just kicked into a higher gear than it was already in. That's a big encourangement!

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Sure thing! And don't worry, hypermetabolic mode has an end and your appetite will adjust accordingly.

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Unless you have an egg allergy, you can include eggs into your diet for some killer protein. Egg white omelets or even a hard boiled egg before bed or as a snack.

I may also recommend a protein shake for those "fill in" snacks.

Keep eating LEAN protein and you'll pack on LEAN pounds.

Keep us posted.

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Well, I did stop counting calories and focusing big time on the protein. I've been trying to make sure that I get some protein with each meal every day, even just something as simple as some nuts as a snack. While the scale hasn't moved a whole lot (maybe 1 or 2 lbs.), I do see a difference when I look in the mirror, particualarly in my arms and legs. And the pants I wore to work today are a bit snug right now (probably makes my backside look good! :lol: ). So it's coming back slowly, which I expected. Which, from what I understand, it's better that I put in on slowly and methodically, because it will be both healthier and will stick better.

Thanks for the encouragement guys!!

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I think I'm going to get a T-Shirt made up that says "I've lost both weight and gluten, and never felt better!" ;)

I'll take one of those tee shirts. :)

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I'll take one of those tee shirts. :)

Hi All, Thanks for the post it does give me some comfort. I recently (two weeks) went gluten free and I have dropped about 7 or 8 pounds in the last two weeks. I am so concerned of this. I am a petit person to start with at a height of 5 feet 7 inches and am weighing now 116 pounds. I have always been slim anyway but this is to slim now and seems to be continuing to drop. I am very sick right now since going gluten free. Actually I have been house bound for almost 20 years with Chronic Fatique, Multiple Chemical Sensitivities and recently realized the gluten issue. I have spent the last 4 years cleansing, my body and trying to build and this has helped me greatly! but! was still hitting a brick wall. I am amazed at the changes I do feel from elimating the gluten. I am HUNGRY! Have not felt that since I was a kid. But i am experiencing allot of suffering now.

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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.  It is a good thing my doctor was monitoring my supplementation as I gather too much iron can be dangerous.  Have you been told to supplement by your doctor?  If you are supplementing make sure you get your levels monitored. All the very best - and welcome to the forum!    
    • 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
      Okay, I get that you are not going to follow the advice from some stranger on the internet, but please read the links that I gave you.  Your doctor is not following the standard level of care.  I am dead serious.  I have Kaiser.  My own GP doesn't have a clue about celiac disease, but my Kaiser GI does.  Please, I urge you to get properly diagnosed.  All celiac testing requires you to be on a gluten diet.  If you go gluten free even for two weeks (it will take time to get the referral and appointment), it will mess up the tests.  Your GI will put you back on a gluten diet (called a gluten challenge) for 8 to 12 weeks.    Chances are (almost 100%) you will feel more miserable!  That will just delay your diagnosis.   Symptoms not bad you say?  I had pretty severe anemia, but no tummy issues.  Two months after my diagnosis, I fractured my back DOING NOTHING!  Yep, I have osteoporosis from undiagnosed celiac disease and I am an athlete!   Please take this seriously!    
    • 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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