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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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alissar

Puffy/swollen Eyelids

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Hello! Since I was a teenager, I have woken up EVERY morning with swollen eyelids (top and bottom), and sacs of fluid underneath my eyes. I tried for years to figure out why, but the only possibility came down to a slight allergy to dust mites. I have hardwood floors, cover my beds with dust mite covers, sleep with silk bedding, have a hepa air purifier, wash my bedding in solution that kills mites every week, take allergy shots, and take an antihistamine before bed....my point....I highly doubt the fluid sacs around my eyes are from dust mites.

All of my labs for every disease or illness under the sun that cause puffy eyes came back normal. I am healthy and have a low sodium diet. My hands do swell at times, but other than that no other parts of my body are ever swollen.

Two weeks ago, I received my results from enterolab stating that I have anti-gliandin levels of 68 units (well above normal)...aka, I am gluten intolerant. I have not been tested for Celiac. (Should I trust enterolab results?)

As far as my eyes go, there is no real itch most of the time, the side I sleep on tends to be worse (although it always affects both eyes), and my eyes are very red. Preparation H causes much less fluid retention, so that leads me to believe this is due to angioedema (some sort of intolerance/allergy). I have seen an ophthalmologist, ENT, oculoplastic surgeon, and allergist who all agree, but can't figure out what the problem is.

I have been off gluten for about a month (but have been accidentally glutened) and have seen improvement. Do/did any of you wake up with swelling around your eyes due to gluten on a daily basis? How long after going off gluten did this issue go away? Its so frustrating!

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I am not sure if this is gluten related just yet since I only started my gluten-free diet one week ago, but for the last year, I've had a puffy-feeling face that is red and I can feel it but others cannot see the puffyness, but I know its there. I had stomach problems before this and then was put on flagyl which made things much worse, so my face could still be having side-affects from the flagyl or the gluten or both. Hopefully we will both see changes soon.

It is frustrating but we have to stay positive. You are a strong person!

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I wake up mornings with swollen eyes and bags and have not found that being off gluten has helped much. The only things which have helped was when I did a whole year or so of internal body cleanses (parasite, kidney, liver flushes and various liver support and toxin removing herbal programs). Its possible that you have some food allergies and if you are not digesting your food properly the food antigens could be passing into your body. You may have a silent reflux so when you lay down small amounts the undigested food backs up into your esophagus and mouth and the food antigens may be spread in saliva across your face as you are sleeping.

I found a book which guided me in removing toxins from both my body and environment. If you are reacting to some chemical then anything with a chemical solvent may be causing your reactions even the polish on your shoes, formalin in your bedding, furnature polish, traces of detergent on clothes and bedding, recently painted surfaces, traces of cosmetics. It took me several years to clean out the all the toxins from my home. You might also have molds growing in the structure of you house, especially the bathroom and kitchen.

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Mari,

Have you been able to pinpoint what is causing your eyes to swell up in the morning? How long have you been off gluten for? I guess the reason I thought it was from gluten is because of the decrease I have seen in the puffiness every day since going gluten-free. But, I am definitely willing to explore more options and other areas as a source of the problem. Thanks!

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    • Apologies for my over-reaction.  As the shampoo exposure was only for a couple week or so, I doubt any lab tests would have indicated exposure. Unfortunately, since I didn't have the antibodies, I can only rely on my symptoms to tell me if I've been exposed. I'm fortunate enough that eliminating gluten (and dairy) from my diet completely fixed my problems. I have had no lingering systems, and now that I have been gluten free for a while, when I do get gluten I have a very clear reaction (and a distinct reaction to dairy) that follows a fairly predictable timeline. This has accidentally been tested a couple of times. For example, early on before I was better at reading labels I grabbed some cookies at the grocery store that I thought were gluten free (the company produces both a normal and gluten-free version, and this was before I learned to avoid shared facilities). I had grabbed the wrong bag but I didn't figure it out until about a week of feeling crappy had passed and I went searching for a culprit. Things like this have happened a couple of times, where I accidentally did a blinded experiment on myself. The symptoms are consistent, and resolve once I remove the offending item. So when I recognized my symptoms as the result of gluten, I went looking for a culprit and I found the shampoo and conditioner. I removed them and then I got better.  My problems are largely systemic. I wouldn't be surprised if I don't actually have celiac but some other immune mediated reaction that hasn't been defined, but calling it celiac is the best way to get people to take my needs seriously (which I'm sure you understand). Unfortunately, my problems don't seem to fit into any particular diagnostic bucket, so I've learned not to rely on the official medical terms and just go with what works. I'm lucky to have had doctors who think the same way, else they might have told me that I didn't need to go gluten free once I failed to show clear-cut celiac. Maybe I'm pre-celiac, maybe it's the much maligned NCGS, or it's all related to leaky gut (I am eagerly awaiting the FDA approval of larazotide so that I can get a doctor to give me some, I think it might do me a lot of good). All I know is that when I went gluten and dairy free it literally changed my life.  In general it seems that gluten exposure causes a generalized inflammatory response. I get some inflammation in my gut that manifests as reflux, acid indigestion (what I call "fake hunger"), and a little bit of urgency and unpredictability with regards to bathroom needs, but if that were the only problem, I think I could live with it. I also get headaches, brain fog, my depression/anxiety gets triggered to a scary degree, arthritis, muscle aches, and then, the clincher, muscles spasms in my upper back and neck that have been known to lay me out for a couple of days while I wait for the muscle relaxants to help me heal. The muscle spasms, arthritis and brain fog are the most recognizable and are usually what cue me in that I got glutened, especially the spasms.  Again, sorry for being oversensitive. I should have known better, since this is such a supportive community.  
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