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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.

I'm Wasting Away...
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14 posts in this topic

Hey everyone,

Brief background:

Self-diagnosed about a month ago. Way, way, way too many symptoms. Exercised and have eaten a great, nutritious diet for over a year (before it was a little shaky). I exercise daily (I run).

Over the last year (as I changed my eating habits and such), I lost 30lbs or so. It was great, I felt like dung because I didn't know what the hell was going on with my stomach, and fatigue sometimes kept me in bed for days, but otherwise, I was eating well and exercising when I could.

So I get home in May (from university), and I start running, as I am finding that if I run before breakfast, interestingly enough when I didn't eat anything yet, that I had the energy to do so. I drop about 5lbs in two months - unneeded, but definitely due to running. I also put more grains in my diet, for energy. The opposite was occuring. (Wonder why, eh?)

So then I get suspicious about this disease, and whatever (you know how it goes), I self-diagnose and all signs point to yes, and I go gluten free.

All of a sudden, I have more energy, feeling better, things are slightly improving (little things here and there). Stomach still acting up, but everyone tells me that takes months. I am eating tonnes and constantly eating. I am consuming all food groups - not too many grains (putting them in slowly, and it's hard because I'm allergic to rice and buckwheat), but tonnes of good carbs to make up for it.

Anyway, that hardly makes a difference because I wasn't a wholegrain carb junkie anyway.

So, in one month, I dropped about 15 lbs. I have eaten even more than I usually do, and am doing the same amount of exercise.

I am 5'7.5'' and weigh 110lbs. That's pretty sick. I'm a size 0 and everything is too big; I look like an anorexic, and I hate hearing the gossip.

Did this happen to anyone - the weight just PEEL off? Is it because my body isn't absorbing anything? What's going on?

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Did this happen to anyone - the weight just PEEL off? Is it because my body isn't absorbing anything? What's going on?

<{POST_SNAPBACK}>

Are you sure you're not accidently getting some gluten? My weight starts dropping fast if I get glutened...I think because I havent really healed yet....also its very bad if I repeatedly get glutened. This is when I look scary thin.

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Rachel

I'm almost positive! There is really no way I can be glutened, I am being neurotic about everything that touches my mouth, skin, hands, everything.

Could it just be my body still adjusting? It's only been about three weeks?

Also, did you ever feel excessively thirsty? Like, constant, constant thirst? So much it's almost life-impeding?

And my stomach is being a little crazy right now - like there are dancing men in it. It doesn't hurt though, it's just bouncing around. Is this all just new adjustment? Gas, even?

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Also, did you ever feel excessively thirsty? Like, constant, constant thirst? So much it's almost life-impeding?

Are you urinating a lot, too? Excessive thirst and frequent urination can be signs of diabetes. Type 1 diabetes is linked to celiac disease. Maybe you should get your blood sugar tested?

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I am, yes, but had my blood sugar tested a week and a half ago. Thanks though!

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Have you had your thyroid checked? When my thyroid was overactive from Graves Disease I had lots of energy...huge neverending appetite and lots of thirst. Plus overactive thyroid causes weight loss...even with excess food intake. If you've had that checked then maybe your body is still adjusting since its only been 3 weeks...I wouldn't think you'd continue to lose weight though.

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Have you changed your products like makeup, nailpolish, shampoo, soaps, lotions, etc to all be gluten free. Could you have been glutened that way?

Also, I know you say you couldn't have been glutened but at first I was thinking that too and there was alot of the hidden gluten that got in. So you are sure you know the hidden gluten sources as well?

Also, as Rachel suggested, being tested for Graves may be a good idea. It is connected with celiac and I also had it.

I had weight loss and it started coming back 3 months after going gluten free so maybe it will come back with time for you as well. Damage done over the years takes a toll and your body is healing and getting rid of that gluten.Have you noticed any weight loss since going gluten free? Or have you stabilized?

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I've definitely have lost more since going gluten free. About 10lbs. <_<

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I've definitely have lost more since going gluten free. About 10lbs. <_<

<{POST_SNAPBACK}>

So have I! i have been gluten-free for about 5-6 weeks now and I have lost 15lbs. Everyone keeps asking me, "is everything ok? You are too skinny" I don't know what else to do....I have even tried eating ice cream (gluten-free of course) as much as possible to gain weight but nothing works. I eat choc a lot too!! I am also 5'6 and about 110lbs...0 size and even that sometimes is too big. I don't know what to do but my parents suggested going to see a nutritionist. They said they should be able to help me figure out how to get more calories in or whatever it is that I need to do. I just am getting tired of seeing people stare at me (my friends and people that knew me before) and them asking me if I'm ok!! No, I'm not ok but No, I don't have an eating disorder is what I have to tell them!!!! Its so frustrating and I completely know what your going through! My suggestion is see someone who can help you with your diet...maybe that will help!

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:) Wow. I understand, although I never lost that much weight. I started getting scared when I hit a size 4. When I started learning more about what I could eat that is gluten-free I started gaining and now I'm a 14! Maybe I screwed up my metabolism. Ironically I started gaining weight when I cut out dairy.....and I started eating things with soymilk (Soy Lattes at Starbucks are responsible I think). I had lots of dairy associated diarrhea and once that stopped the pounds started to pack on. Also, I think the discovery of hummos helped me to put on weight. I will need to exercise more to stabilize I think.

Maybe your doctor can refer you to a dietician? That's what mine did when I was at my lowest weight.

I wish the best for you and good health very soon. Hang in there.

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This happened to me too... I lost about 15 lbs, a lot for me (before was 130 at 5'4") and freaked out over the fact that I just couldn't seem to gain it back... well, about a year later I am in the mid 120's and have no trouble keeping it on :). Really I just tried to listen to my body and ate really simple foods (none of the really complicated replacement foods) for several months and slowly I stopped losing and adding some back on. So if you think your diet is clear of any gluten and other foods you may be sensitive to, you can definately see a nutritionist (make sure that when you make your appointment you ask if the person is familiar with gluten-free diets or it could be a waste of your time) but my advice would be to be patient, its only been a few weeks, right? As my mom kept reminding me, it took me a while to get this sick, it will take a while to get better.

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You said that you are running a lot and you like to excersize. I remember when i was not diagnosed yet I used to play soccer. I had lost 30 lbs and I was constantly fatigued and had absolutely no energy to run at all.(and losing more weight). My coach was constantly pulling me out of games and asking why i couldnt run anymore. I was finally diagnosed after the soccer season ended and was happy to see that the next season i was a whole different person on the soccer field, full of energy. (and gained back at least 15 lbs)! so the gluten free diet definitely helped with my energy increase. It sounds like the gluten free diet is not helping anything with your body. It sounds like it could be caused by something else. I am no doctor or anything but maybe you should see a doctor about this. I hope this helped but good luck!!!

~Lisa

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Lisa - other symptoms have improved - just not the weight issue (but it's only been 4 weeks)? I have had the best runs I have had in about 5 months in the last two weeks. I wake up with energy and don't feel like falling asleep after ten minutes of eating. I would think that those are huge signs of improvement!

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I know I post this a lot and I sound like a broken record, but I will say it to you too because it is definately pertinent information. You should definately look into the specific carbohydrate diet (breakingtheviciouscycle.com). It is geared for people who want to gain weight. Basically it heals your body so you can absorb nutrients properly again. Please look into it. It is the best thing I have ever done for myself!!!! (PS I am an athlete as well and I have never felt better!!!)

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    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
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      I have not. I'll talk to my doctor about it
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