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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Anybody Experience Puffy Swollen Face?
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Hi guys. I'm new to this Celiac thing.

About a year ago my face started to look very deformed. It became puffy and swollen like the marshmallow man. I developed huge cheeks that sag, my face looked like the moon. Some days it looks like I have a swollen double chin and my under eyes are puffy. I didn't know if it was fluid retention, or from my chronic sinus, aging, or what. Last month, I finally went to the doctor, and he told me I have celiac disease. He told me its an autoimmune disease and I could have possibly developed Hashimoto thyroid problem. He told me in order to correct this, stay away from gluten or any grains, dairy, soy, legumes, sugar or tomatoes since I couldn't afford to take any allergy test at the time. He told me just to completely avoid these foods to be safe atleast for 3 months.

Since trying my best to stay away from these foods, I can see my face trying to get back to normal, especially when I excercise. Last week I could actually recognize my face in the mirror for the first time in a year. I looked young again. I was told by exercising, the sweat gets rid of the inflammation that is swelling my face. My chronic sinus problem cleared up as well.

However I get frustrated because it seems that everytime I think I'm eating healthy, my face starts to get swollen and my sinus starts acting up again. I know this means I have to start sorting out what is giving me an allergic reaction. I have went through all my makeup, vitamins and the foods I have eaten for the past week and I notice they all either have soy or cornstarch in them. I thought the foods I was eating that had these ingredients were gluten free and that I would be able to tolerate atleast a little of these substances. But I guess not. Its getting to the point where I don't want to eat anything if my face is going to always look ugly everytime I eat. This disease has really affected my self esteem because I don't look as young as I used to look.

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Hi Emryee,

Welcome to the forum! I have had lots for the swelling puffy parts issues myself. My feet used to be swollen and my ankles and feet were marshmallow man style also. I quit wearing socks except at work and always took my shoes/socks off as soon as I could when getting home from work. When I took my socks off there were always big 1/4 inch deep creases in my ankles from the elastic at the sock top. My swollen face was made even more appealing by having dark circles under my eyes, and a red and white patchy complexion. My feet also looked weird with blue and white patches in the skin. I was practically a Hollywood star! :)

It took a while but that is gone now. My feet still swell when I get into something I react to but that is not a normal thing nowadays. And my complexion turned somewhat life-like and my feet got warm too, instead of being cold all the time. I look like a live person now. All that started changing when I went gluten-free but didn't totally turn around until I eliminated several other foods that were bothering me. My sinuses also got much better and I stopped having allergic reactions to most everything around me. I used to take multiple anti-histamines every day to keep my eyes open and be able to breathe. I rarely take anti-histamines now. I think I have taken 2 or 3 pills this year. I don't think I even bought any this year, where I used to buy them regularly before.

So anyway, it can get better and that's no bull. :)

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Thanks for your response. That is what I want, to get to a point where the symptoms are not normal. Its to the point that I will go 2 or 3 days without eating so I don't have to experience the reactions.

I think one problem I'm guily of is getting convenient foods from restaurants. Even though the foods I will get from restaurants are gluten free (at least i think) I come up with an allergic reaction.

I've did good for a week and my face and swelling was going back down, then I stopped at Chipotle Mexican Grill. I had the salad which contained lettuce, grilled chicken, pico de gallo, guacomole and salsa. All items at Chipotle Restaurant are gluten free except the tortillas which i didn't eat. I didn't even get the cheese, sour cream or corn for fear I would have a flare up.

Then later at night when I was about to go to bed I took a vitamin.

The next day I woke up, with a very puffy face and my stomach was bloated. I went to the Chipotle Restaurant website and found out that most of their foods have soybean oil. However I don't think this caused my reaction because I usually get puffy and bloated right after eating an allergic food, and I didn't get puffy all day until I took my vitamin. It finally occured to me to check the ingredients of the vitamin I was taking and I found cornstarch.

Three days later I went out to a chinese restaurant and ordered from their gluten free menu. Didn't even get the rice so I thought for sure I would be okay. Well I had a nasty flare up and my sinus started to act up. I looked at their ingredients and again, even though I made sure to order Gluten free, their was that cornstarch again. They had gluten free soy as well but not so sure if soy is really my problem. Although it could very well be.

It really sucks because these ingredients are practically in everything I like to eat including soy in barbeque sauce. I guess that will be enough of eating out for me. I do not trust any place that says gluten free, I will be preparing my own foods for now on.

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If cornstarch is causing problems for you, it means you are intolerant to corn. That is not uncommon, but is not directly related to celiac disease. The starch in corn (maize) is gluten-free as defined by celiac disease.

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I had to deal with the puffy face for many months even after going gluten free.

Some days I looked fine but most puffy. There are histamine foods which turned out to be significant for me. If I don't eat histamine containing foods I am not swollen and puffy. If I eat any of I get a reaction that ranges from puffy and swollen to itchy and skin rash. Some vitamin deficiencies cause puffiness too. Vitamin D and Vitamin C degiciency will cause swelling and puffiness...there may be others. Have you had vitamin levels checked? Anti-histamines sometimes help. With the food allergies that is....but with gluten...no..you just have to avoid it entirely. Sorry you have to deal with this. There are several websites that talk about what foods contain histamine and how to limit them if this is actually other food allergies in addition to Celiac/Gluten Intolerance. I stopped swelling and getting a puffy face as soon as I stopped histamine foods for about a week.

Good luck to you.

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Recently had a problem with swelling of my feet. I doubled my vit D intake, 1000 IUs 2x daily. Was also getting tingling so increased my zinc to 30 mg 2x daily. And I was getting pins and needle poking which I read could be a need for L-carnitine and/or a replacement of electrolytes (Gatoraid). Hope that helps!

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Thanks alot guys for the great advice!

I never thought about histamine foods being a potential cause of puffiness in the face. I looked up some histamine foods and I eat alot of avocado/guacomole. I suspected early this year that the avocado's might be causing me problems, but didn't pay it much attention. I will also pay close attention to bananas. Don't know if it causes a swelling face, but I do get a itchy sore lip after eating it. I would hate to give it up being that bananas are my sweet substitutes for dessert. But I will try it to be sure what kind of reaction I get.

As for those who mentioned Vitamin D, I'm pretty sure I probably have a defiency. Vitamin D was one of the first things my doctor offered me to take as far as supplements. Never did take my docs brand because I have some at home, but I just noticed the one I have is made out of soybean oil so don't want to take a chance on taking it. I will go ahead and get it from my doctor, take it regularly and see if that helps.

Thanks!

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Before I was diagnosed I had a lot of water retention which made not only my face puffy but my hands, stomach and feet swollen too. However, most of that went away within the first week of being gluten free. But usually if I get some gluten on accident the next day my face is slightly puffy. Working out has helped me a lot too, although it was really difficult at first.

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Hmmm... If it really is water retention from the gluten, I wonder if sitting in a sauna would also help besides exercise? Or would it do some harm being that your losing water?

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"Then later at night when I was about to go to bed I took a vitamin."

have you checked to make sure your vitamins are gluten free? Many times they sneak gluten in there as a binder, it's also in make up, listicks, face powder, and so many other sneaky places.

My face puffs up too, as do my legs, feet, and stomach. I also get a rash on my face, neck, chest, etc. I hate eating out, and try not to, but it's convenient when traveling, etc.

Good Luck!!

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Yes, i suspected the vitamin, most of them say gluten free however corn starch or soy is one of the ingredients used in most of them and I suspect I am allergic to both or one of the other. Or like you said, it could be possible some gluten has been sneaked in there. So I will be throwing those out and switching to new brands. I notice I don't get a reaction from vitamins made with rice flour.

As far as makeup, I suspected their might be something in the blush I use so won't be using it anymore just in case.

Your right about going out to eat. My doctor warned me about eating foods advertised as "gluten free" in restaurants or pre-packaged gluten free foods at the grocery store or Whole Foods Market. He said they are nothing but extra sugar and stay away from them. But they are so convenient and appetizing. Everything is pretty good if I can avoid these and just cook for myself. But on busy days you just want something on the go.

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My doctor warned me about eating foods advertised as "gluten free" in restaurants or pre-packaged gluten free foods at the grocery store or Whole Foods Market. He said they are nothing but extra sugar and stay away from them. But they are so convenient and appetizing. Everything is pretty good if I can avoid these and just cook for myself. But on busy days you just want something on the go.

Your doctor made a sweeping generalization. It is true that some gluten-free baked products are higher in calories than similar wheat based ones. Choose carefully. But in many cases the extra calories are because the food is denser in texture, not because of added sugar. :angry:

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I woke every morning with a swollen face and tongue (I could see my teeth marks on my tongue) for 5 years. I thought it was from sodium since it seemed much worse after having salty anything. I used such little salt trying to fix it and it never worked. I asked my Dr. (and I use that term lightly) over and over...he said it was my weight. What? :angry: Then my dermatologist found the real issue (I get a nice RED flag on my face any time I'm glutened). BUT...my face was still puffy and tongue swollen after going gluten-free. It wasn't until I realized casein protein was the cause of my swollen face! Now I can have salt again, yippie. Keep eliminating until you see improvement. I have 5 food allergies! You never know. Best of luck...

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I also woke up every morning with an extremely swollen face before going gluten-free. I have been gluten-free for about a year now and the swelling has improved about 90% but is still there (mostly around my eyes...so embarrassing, however, if I eat any gluten then the swelling returns fully. I suspect dairy might be an issue for me also and am about to eliminate that for a couple of weeks and see if the swelling stops. I hope you are able to figure yours out. Its SO frustrating!

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Hey alissar, I would say same situation for me. My face has improved about 85 to 90%. But when I am glutened, the biggest problem now is puffy eyes. It used to be my cheeks and still is but has somewhat improved, but I'm noticing a problem with my eyes. When the puffyness goes away, It leaves a crease that kind of looks like bags or that I have some sagging going on. I guess its from the skin being swollen or stretched so much. It makes me look 7 years older than what I am. If this doesn't go away, I will consider cosmetic surgery within the next year.

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I woke every morning with a swollen face and tongue (I could see my teeth marks on my tongue) for 5 years. I thought it was from sodium since it seemed much worse after having salty anything. I used such little salt trying to fix it and it never worked. I asked my Dr. (and I use that term lightly) over and over...he said it was my weight. What? :angry: Then my dermatologist found the real issue (I get a nice RED flag on my face any time I'm glutened). BUT...my face was still puffy and tongue swollen after going gluten-free. It wasn't until I realized casein protein was the cause of my swollen face! Now I can have salt again, yippie. Keep eliminating until you see improvement. I have 5 food allergies! You never know. Best of luck...

What kind of salt do you use? I heard it would be best not to use Iodized salt, but use Sea Salt or Celtic Salt particularly for those who have developed other autoimmune diseases from this disorder such as hypothyroid problems.

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Your doctor made a sweeping generalization. It is true that some gluten-free baked products are higher in calories than similar wheat based ones. Choose carefully. But in many cases the extra calories are because the food is denser in texture, not because of added sugar. :angry:

I am learning this slowly. I think my doc just wanted me to be safe being that you can develop other food sensitivities with this disorder or autoimmune disease. I was craving something sweet so bad, I went to Wholefoods and found some gluten free/corn free chocolate cookies. Even though doctor warned me about eating from gluten free packages, I ate them anyway and had no reaction. Yay!

I was a little scared of purchasing gluten free products not only because of what my doctor said, but because their have been times I purchase something gluten free and I come up with a reaction. But I think the product actually was gluten free, it was actually caused by the corn in the product. Alot of things gluten free are substituted by corn starch even in some vitamins. So my doctor was telling me to avoid pretty much anything and everything just to be safe.

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What kind of salt do you use? I heard it would be best not to use Iodized salt, but use Sea Salt or Celtic Salt particularly for those who have developed other autoimmune diseases from this disorder such as hypothyroid problems.

I didn't know that but that's the kind of salt I use, from france :). I want to try Hawaiian salt too. I am sure processed foods use the bleached salt so I try to have so little PFoods.

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I used to think about getting cosmetic surgery from the swelling too (and I am pretty young, 27). But, as the swelling has diminished my skin has tightened back up. Also, I my derm prescribed me retin A cream to improve the integrity of the skin that was swelling and it looks much better. Things that have helped with my swelling are decreasing sugar intake, taking probiotics, drinking coconut water, a teaspoon of coconut oil/day, and taking fish/flax oil. I definitely know how frustrated you probably are. I was really depressed about the swelling, but it is continuing to get better and better. Its just been a very SLOW process (about a year). I am hoping the swelling will be gone in another year once my gut is completely healed. Hope this helps!

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