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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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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lorka150

I'm Wasting Away...

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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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    • The reason I think it was the shampoo? Process of elimination. Our house is almost entirely gluten free (except for this shampoo which slipped through the cracks until I read the ingredient label). My husband has bread that he eats at lunch, but he practices something that resembles aseptic technique from the lab when he's making his sandwiches. He's been doing this for years now and I've never been glutened from within my home. The previous week I hadn't eaten out, I cooked all my food, I don't eat processed food and I never eat something from a shared facility.  Usually if I get glutened it's a single dose sort of thing and it follows a very predictable course, to the point where I can estimate when I got glutened within 24 hours of when it happened. However, this time, I was feeling achy and arthritic and moody for about a week before it got bad enough for me to recognize it as the result of gluten exposure, at which point we went searching and found the shampoo (and conditioner, which does leave more of a residue than shampoo), which he immediately stopped using. Within three days I was feeling back to normal (which is the usual course for me).  Sure, it could have been something else, but I know how sensitive I am, and, as silly as it sounds, it was the only thing that made sense. The other thing you said: You're correct, mine was not a rock solid celiac diagnosis, but I have no doubt that gluten is the problem. I was SICK. I went through two different gluten challenges in an effort to get a more straightforward diagnosis during which I was a barely functioning human being. Consuming gluten may not have given me blunted villi or elevated antibodies, but it did inflame my gut, and actually started to damage my liver. If you look at my diagnosis thread, I had elevated liver enzymes, which have been correlated with celiac disease in the past. There was no alternative explanation for the liver enzymes, he checked EVERYTHING.  I too am a scientist and I have spent a lot of time with the literature trying to make sense of my condition.  https://www.ncbi.nlm.nih.gov/pubmed/26150087 I also have no doubt that gluten was damaging my intestines in some way, as any prolonged gluten exposure in the past has inevitably been followed by a severe FODMAP intolerance that goes away once I've eliminated the gluten and given myself a month or so to heal.  I also had a very fast diagnosis following the onset of symptoms (~1 year) so it's possible that the disease never had a chance to manifest as full celiac. I wasn't willing to eat gluten long enough to find out. As a result of my diagnosis, hazy as it was, I am *meticulously* gluten free. It is not a fad for me. I don't occasionally cheat. It is my life, for better or worse. All of that being said, I'm not sure what my diagnosis has to do with your question. You say you're not trying to be rude, but when you bring up my diagnosis in a thread that has nothing to do with diagnostics, it seems like you're trying to undermine the validity of my disease or the validity of my input in this forum. If I'm being hypersensitive, I apologize, but that's how you came across on my end. I'll admit that the fact that my diagnosis wasn't more straight forward does make me a bit defensive, but I promise that even if I didn't have a solid diagnosis, I interact with the world as though I did, and I'm not out there giving people the wrong idea about celiac disease by not taking it seriously. If there was a connection between your question and my diagnostics that I missed I would appreciate you giving me the chance to better understand what you were asking. 
    • I am just curious.  As a scientist (and I am not trying to be rude), how can you determine if hydrologized wheat protein from your husband’s shampoo was actually the culprit?  If I recall at your diagnosis, you were seronegative, Marsh Stage I, gene positive,  but your doctor still  suspected celiac disease.  You improved on a gluten diet.  Other than observation, how do you really know?  Could it not be something else that triggered your symptoms?   I firmly believe that even trace amounts of gluten (under 20 ppm), can impact sensitive celiacs.  But traces of a protein within a shampoo from someone else’s hair that was rinsed?    
    • I also can't have dairy but through a series of experiments and a lot of research I think I've pinpointed my problem. It may or may not be the same for you, but I thought I'd share.  There are two kinds of beta-casein protein A1 and A2. We'll call A1 "bad casein" and A2 "good casein". The two proteins differ only in a single amino acid, but this is enough to make it so that they are processed differently in your guy. Bad casein is actually broken down into a casomorphin, which is an opioid peptide. That does not mean that milk gets you high, or is as addictive as heroin, or anything like that, it just means that it can interact with opioid receptors (which the gut has a bunch of). It's worth noting that opioids cause constipation due to their interaction with the opioid receptors in the gut, and that a lot of people feel like cheese and dairy slow things down, but any connection between the two is pure speculation on my part at this point.  Now here's where things get weird. The vast majority of milk cows in the western world are derived from Holstein-like breeds, meaning black and white cows. In a few select places, you'll see farms that use Jersey-type cows, or brown cows (Jersey cows produce less milk than Holsteins, but many connoisseurs feel it's a higher quality milk, particularly for cheese).  Holstein-like cows have A1 and A2 casein (bad and good), however, Jersey-type cows only have A2 (good casein), unless their genetic line involved a Holstein somewhere in the past, which does happen.  A company in New Zealand figured out how to test their cows for these two genes, and selected their herd down to cows that specifically produce ONLY A2 (good) casein. You might have seen it in the store, it's called A2 milk. Some people have had a lot of luck with this milk, though it still doesn't solve the problem of cheese.  I have suspected, due to trial and error and a few accidental exposures, that I have a problem with A1 casein, but not A2. In line with this: I am able to eat sheep and goat dairy without any difficulty, so at least I can still enjoy those cheeses! I am also fortunate because I'm apparently not too sensitive, as I can still eat cow-milk butter. The process of making butter removes *most* (read: enough for me) of the casein.  However, if I eat cow cheese or a baked good with milk, I get really sick. It's a much faster reaction than if I get glutened. Within minutes I'm dizzy and tired and my limbs are heavy. I have to sleep for a couple of hours, and then, over the next couple of days, I'm vulnerable to moodiness and muscles spasms and stomach upset just as though I'd been glutened (though the brain fog isn't as bad). I actually haven't tried A2 milk yet, mostly due to lack of availability (and motivation, I don't miss milk, I miss CHEESE). However, last year, when I was getting ready to go on a trip to Italy, I had a thought. Once, in the recent past, when I'd been testing dairy, I'd had a slice of parmesan cheese. Miracle of miracles, I was fine. I didn't feel a thing! I was so excited that I ran out and got some brie to eat as a snack. That did not go so well... Turns out parmigiano reggiano is made from the milk of the Reggiana variety of cow which is, you guessed it, a brown cow (they say red). I did a little more research and found that dairies in Italy predominantly use brown cows. So I decided to try something. As some of you may know, Italy is something of a haven for celiacs. It's one of the most gluten-free friendly places I've ever been. You can say "senza glutine" in the smallest little town and they don't even bat their eyelashes. You can buy gluten free foods in the pharmacy because they're considered a MEDICAL NECESSITY. If travelling-while-celiac freaks you out, go to Italy. Check out the website for the AIC (Italy's Celiac society), find some accredited restaurants, and GO NUTS. While I was there, I decided to see if I could eat the dairy. I could.  Friends, I ate gelato Every. Single. Night. after that. It was amazing. Between the dairy being safe for me and the preponderance of gluten free options, it was almost like I didn't have dietary restrictions. It was heaven. I want to go back and never leave.  So that's my story. Almost too crazy to believe.  TL;DR: Black and white cows make me sick, brown cows are my friends.
    • I'm a scientist, and I did a little research into the study. Looks valid and it was published in a respected journal.  http://www.gastrojournal.org/article/S0016-5085(17)36352-7/pdf The science looks solid. As someone who didn't have a super clean cut diagnosis before going gluten free, I'd love to see something like this become available. Then again, there's no doubt in my mind that I can't have gluten, so any additional testing would be purely academic. But like I said, I'm a scientist. I can't help myself. 
    • Update: I have tried calling the company several times and have emailed twice. I have yet to talk to a person on the phone and no one has emailed me back.    I did a little research and they were are already involved with a class action lawsuit about being labeled as salt free and one of the first ingredients is sodium chloride.  I am done with this shampoo because this whole company seems a little shady now! 
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