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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.

Water Retention/edema
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33 posts in this topic

Hi, I'm new here. I was wondering if anyone else has water retention or edema as a part of their celiac disease or gluten intolerance? My primary complaint is puffy eyelids and puffy fingers in the morning. Am I alone in this? Perhaps it's not even related to my gluten intolerance? Anyone have a similar experience? Thanks for any help/advise you can give!

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In my pre-gluten-free days I would get the puffy hands very badly, so bad in fact I couldn't even move my fingers for hours after waking up.... my doctor then sugested no salt, and I can tell when I have eaten to much salt as I will get the puffy hands.... needless to say I haven't cooked with salt for many years, and unless I eat something like chips or pre-cooked store bought stuff where they add salt I dont have any problems...

You may want to try this also, not sure it will help but its a easy fix if it works.

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Thank you! I was wondering if a meal high in salt made my hands more puffy, but I thought it might only be my imagination. Is it typical of celiacs to react poorly to salt?

I've just recently been told I'm gluten intolerant, and I'm only on my 13th day of a gluten-free diet. I wonder when I'll start to feel really good? I've so far been experiencing what I think is withdrawal from gluten. My stomach almost feels worse and more bloated than it did before I went gluten-free. Is that normal? I have so many questions!!! Thank you for your response!!!

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For one I crave salt like crazy and I know I use more now than before going gluten free.

I wake up with puffy eyes every morning. And my fingers are puffy right now! lol

Not sure why though! B)

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Have you thought about a problem with dairy?

I know it seems rough when your starting out but you might try cutting back on that and the salty snacks. good luck with the new diet. it gets easier.

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Hi, I'm new here. I was wondering if anyone else has water retention or edema as a part of their celiac disease or gluten intolerance? My primary complaint is puffy eyelids and puffy fingers in the morning. Am I alone in this? Perhaps it's not even related to my gluten intolerance? Anyone have a similar experience? Thanks for any help/advise you can give!

Yes...yes...yes! And it's miserable too. Sometimes it can add 5 lbs (or more) to me first thing in the morning and I just have to wait for it to pass. I was diagnosed Nov. 2006 and have been on a gluten free (DF also) since. This only started a couple of months ago and I never ate a lot of salt to begin with. But now I check labels carefully for the sodium but sometimes make mistakes. I don't want to go to the Dr. to get on a diuretic unless it gets worse. So for now I just drink tons of water during the day. Does anyone know something else we can do for this? Thanks.

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Thank you everyone! At least I know that I'm not alone and suffering some strange, unheard of symptom! It is so nice that this website is available - it's helping me not to feel so isolated!!!

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I have had touble with puffy fingers, and face for years off and on, and I don't even like salt. Recently my Dr. asked me to start putting salt on my foods in the hopes of raising my blood pressure. I still don't add salt because I hate the taste of it. I figure there is more than enough salt in the foods we eat. I have noticed, now that you mention it, that since going gluten free I'm not having nearly the trouble with my hands. I still have a very puffy face, but I think that's still from my body adjusting and from being so ill. I'm wondering if the diet change is letting the fluid retention subside. Never thought about it being related to Celiac!

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flourgirl,

That's interesting . . . . how long have you been gluten-free? I'm anxious to see results, but I've only been g.f. for two weeks now. Maybe I'm expecting too much, too soon?

Kritter

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Hi! I was finally diagnosed in November, 07. Even after all of this time I have a lot of illness, but I have seen some improvement. Seems like it's been forever! I thought I was dying last year...kept getting sicker and sicker and lost a lot of weight. Got so that I didn't want to eat anything, ever. If you read much in this forum, you'll see that some people feel better right away, and some take many, many months to feel closer to normal. I guess it depends greatly on how much damage you've sustained, how long it's been going on (we've been doing damage long before it got bad enough to really raise it's ugly head), and how sick your body is.

Hope you see some improvements quickly and feel wonderful soon!

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Flourgirl,

Thank you - you are very kind. I do wonder how many little things that have plagued me over the years (that no one has really had an anwer for) might clear up now that I'm gluten-free. It will be interesting to see how much of it is related to celiac!

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Hi, I'm new here. I was wondering if anyone else has water retention or edema as a part of their celiac disease or gluten intolerance? My primary complaint is puffy eyelids and puffy fingers in the morning. Am I alone in this? Perhaps it's not even related to my gluten intolerance? Anyone have a similar experience? Thanks for any help/advise you can give!

OMG, yes. Please excuse this long reply, but I've got a story on this subject: My ankles started getting puffy off & on when I was in my late 20's, well before I thought I had a problem with gluten. Back then I remember this happening esp. after sushi + soy sauce (I recently found out that most commercial soy sauce contains salt AND wheat). I figured, "just lay off the salt", right? But it kept happening, even when I switched to low sodium soy salt (still contains wheat). Somewhere around age 39, after taking Aspirin for a headache, I developed such SEVERE pitting edema in my ankles that I couldn't wear shoes! The edema extended to my hips! My doctor said it could be either a rare allergic reaction to Aspirin or a sign of borderline kidney function. So, fine-- no more Aspirin or Ibuprofin, ever...

For the next couple years the fluid retention was intermittent. It was driving me crazy because I was trying to be SO careful about sodium and hidden sources of sodium, like preservatives. For a year or so I went on a low-carb diet (minimal bread) and rarely had edema. However, I still hadn't made the gluten connection. Then, about 3 yrs ago (off the low-carb wagon, eating glutens again), the pitting edema became nearly continuous. I was having many other symptoms too, including constant rhinitis, asthma, cough, nausea, anemia, fatigue, palpitations, and so on. My doctor was worried about my heart and my kidneys, but tests on those systems came back normal. For a while I thought maybe I needed MORE salt (!). The edema fluctuated but stayed around. I am (or have been until recently) a lycra shorts-wearing mountain biker. Mountain Biking is second only to my children as my total passion in life. The edema problem was very embarassing and I was quickly losing endurance due to water weight gain. As terrible goes, only the cough was worse than the edema. I couldn't stop coughing, couldn't sleep because of the cough, couldn't keep up with my friends anymore and, finally, I stopped riding. I grew demoralized, depressed.

I will shorten my story to.. "and then a lot of other stuff happened". Advance to January '08 and constant cough, edema, rhinitis, post-nasal drip, and daily vomiting. Just getting thru a shift at work (a hospital) was a monumental task. I believed my goose was cooked-- I thought I was dying and I had no idea why. Then somehow, sort-of by accident but somewhat influenced by my lung specialist, I ended up on a trial Gluten Free diet. Suddenly, my world changed! The rhinitis disappeared within THREE DAYS!!! The cough also faded, I stopped vomiting, and my ankle bones resurfaced! My energy came back too and now I sleep flat in bed again, like a normal person.

Here's the thing-- I recently went to an Allergist for the first time and he treated me like a kook (I thought). I am negative for wheat allergy (he says) and also negative for Celiac Disease per the antibody blood test. Yet here I am, Gluten Free now for 7 weeks and feeling better than I have in YEARS. I'm free of all antihistamines and asthma meds. I even went mountain biking yesterday, my first time in months. I've lost a lot of ground, but wow it's good to be back. Next month I'll repeat my Pulmonary Function Test. I'm expecting a huge improvement based on how I feel and some prelim. measurements taken at work.

Two weeks ago, I accidentally glutened myself (on falafels made with bulgar wheat). I coughed for the next 36 hrs and my ankles puffed up.

In conclusion and back to the subject, whenever I eat gluten I get moderate-to-severe fluid retention/ankle edema. It DEFINITELY goes away on a Gluten Free diet. So.. if I am not allergic to wheat, and don't have Celiac Disease... what the Sam Hill is going on????

P.s. I'm never eating gluten again.

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SheRides,

OMG, OMG, OMG!!!!!! Thank you, thank you for your reply!!! Hidden in your answer was a gem that I will hold onto - you have no idea! I have been sleeping practically sitting up since Oct. I simply cannot breath at night. I'm so congested. My one great goal in life is to be able to sleep lying down again (as you mentioned!!!) I am SO hoping that this gluten-free diet does the trick for me!!! And I will hold onto your testimony and carry it around in my head as proof that it CAN help!!! I'm sort of assuming that the water retention and the congestion are part and parcel of the same thing - because they are both significantly worse in the a.m. - after I've been asleep all night (sitting up.) I am gluten-free now for 16 days. I guess your improvement with the congestion was significantly faster (3 days - wow!) but I will continue to hope and I will perservere with this diet if it can truly help me to breath.

I do have other allergies - but with the help of a fantastic Allergist, I have them under control. In fact, my allergist has written a book called "Food Allergies: The Complete Guide to Understanding and Relieving Your Food Allergies" by William E. Walsh, M.D. You might find it helpful. He is the one who suspected that gluten might be an issue for me. I have had Allergists in the past who just are not "with it" - so if you have one who is like that - follow your own instincts first! You know your body better than anyone! I avoid sugar, eggs, dairy, msg, and citrus. STILL, I can't breath when I lay down at night. Since this particular symptom has gotten worse and worse over the span of several years, I suppose I will need to be patient to see results. I have noticed (after pretty bad initial withdrawal symptoms) that my mood is much better, and during the day I am breathing almost like a normal person. Also, anxiety symtoms are much better, and seem to only pop up if I accidentally "get glutoned" as they say! Isn't it amazing how many seemingly unrelated symptoms can really be part of gluten intolerance?

Bravo to you for getting on your bike again! You go girl!!! And thank you again for your reply - it gives me so much hope!

Kritter

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SheRides,

Oh, by the way, my blood tests came back negative for Celiac disease, too. My Allergist warned me in advance (as did my regular doc) that these things aren't always (or even often) accurate, and that I needed to try the diet to be sure if it would help or not.

Kritter

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I was told when pregnant with my first child (29 years ago) to lay off salt because of extremely swollen ankles. Now I believe that it wasn't the salt at all that was the problem.

If you don't get enough salt your body can't function properly, as it is essential to life. Now, TABLE salt is NOT healthy, and that is of course what is in processed foods. The salt you should be using is natural salt.

I now eat quite a bit of salt (and it is helping my thyroid, too). But I am using Himalayan salt, which supposedly is the best salt in the world, and the purest.

The only times my ankles and finger joints swell now is if I eat gluten, rice, or eggs.

So, my swelling was related to food intolerances all along, and had absolutely nothing to do with salt intake. I might have damaged my body more all these years by limiting my salt intake.

Here is a link to an interesting article. Don't stop at reading the quoted article at the top (which is another ridiculous FDA recommendation), but read Dr. Mercola's comments underneath for the truth.

The truth about salt intake

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Very rarely, unless you are really ill, do doctors test electrolyte levels (sodium, potassium, etc.,). An imbalance will obviously impact on the body as too will malabsorption issues due to gluten consumption and consequent intestinal damage. The malabsorption may stop the body from being able to process salt and other minerals effectively.

I also find that I get puffier when I eat more salt, but apparently that is because I don't drink enough, not because I have eaten more salt, although there has to be a limit on how much we have!

Apparently, when we don't drink enough, the body hangs on to what it has and is less reluctant to let go. The more we drink, the more the body gets retrained into accepting the extra fluid and the more likely it is to let go of what it has. It also wakes up the thirst mechanism because the body is no longer in the habit of hoarding the fluid.

The other aspect of drinking plenty of water is that if we do happen to eat more salt, the extra water will then be available to flush it out of the body.

The consensus is that normal weight people should drink 8 glasses of water a day and those who are overweight should drink an extra glass for every 20lbs of extra weight they are carrying. Water helps the liver flush fat out of the body.

The other day I had a sore liver - I wasn't sure what was going on, but I drank and drank all day to give it a good flush out. The next day I had dropped over 2lbs from the day before! I think my liver had had a good old clear-out.

I know I have never drunk enough and that is something I need to try and remedy, not only because it will help to clear toxins out of my body and help it heal, but because it also helps with weight loss, which I need plenty of help with. I thought that now I had dropped the gluten, dairy, carbs and sugar, the weight would be falling off, but it isn't and I suspect it is because I still am not drinking enough to mobilise it out of my body!!!

I do find sometimes though that having a nettle tea in the early evening helps with water retention and I am usually less puffy (and lighter!) in the morning.

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Ali, those recommendations about water have been proven to be untrue. You can actually drink too much and thin out your electrolytes as a result, which can cause death due to swelling of the brain.

http://www.mercola.com/2004/may/5/eight_glasses_water.htm

http://roadracer.wordpress.com/2007/09/18/...g-good-for-you/

http://www.mailonsunday.co.uk/pages/live/a...in_page_id=1770

http://www.nytimes.com/2005/04/14/opinion/...amp;oref=slogin

Incidentally, my sodium level was measured just last month. And even though I eat a lot of salt, my sodium level is at the optimal level, 142.

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The rhinitis and post nasal drip went away first, then the throat irritation. I think I tried sleeping flat somewhere around day 7, but had to sit up a few times coughing. The ENT I saw (pre gluten-free) suggested I might have some type of silent gastric reflux, aslo called Laryngeotracheal Reflux (or LTR) that happens even when you're upright & mobile. I'll admit I had major heartburn sometimes, but I don't think LTR could explain the rhinitis, the itchy red eyes and the sneezing. Regardless, I couldn't tolerate even one dose of his Aciphex (-->uggh, massive watery diarrhea). If it was LTR that caused my rhinitis, pnd & cough, going gluten-free fixed it all. :)

I wasn't specifically watching the edema (because I didn't "know") but I started noticing how much nicer and non-edematous my ankles were maybe 5 or 6 wks into the gluten-free diet. Great improvement. Eyes not puffy in the a.m., ankles not swollen, even after a 12 hr shift. So anyway, give it some time.

Here's an idea to help encourage your body to diurese (eliminate excess fluid) in a natural way now that you're gluten-free: Swimming. The mammalian "diving reflex" is stimulated by submerging your whole face & head in cool water. This makes your kidneys start working more efficiently. Then physical swimming motions cause the muscles to move extracellular fluid from the extremities back into circulation for rapid processing and elimination. You'll pee like a racehorse, lol! I used to swim a lot and it's TRUE! Of course, spoken by someone who won't have the courage to squeeze into her bathing suit for quite a while longer. I'm seriously considering stealth 2 a.m. lap sessions at 24 hr Fitness, just so I can sneak in the first oh, hundred or so swims sight unseen. :P

By the way, my name is Diana (aka SheRides) and it's nice to be here, meet some of you. :D

~Diana

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Ursa Major,

Thanks for the link to the article. I read it, and it's quite interesting. So, where do you get the Himalayan salt that you mentioned? I've been using Sea Salt for the last 2-3 weeks. Is that good too, or is the Himalayan stuff still better? I try to really limit how much I even use of the sea salt.

Kritter

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Ursa Major,

Thanks for the link to the article. I read it, and it's quite interesting. So, where do you get the Himalayan salt that you mentioned? I've been using Sea Salt for the last 2-3 weeks. Is that good too, or is the Himalayan stuff still better? I try to really limit how much I even use of the sea salt.

Kritter

I got the Himalayan salt from Dr. Mercola's website. Before that I used sea salt (unprocessed) for years, which is also good.

Just avoid table salt like the plague it is! And you should not limit your salt intake when using natural salt. Use as much as you feel you need to make your food taste right. Your body knows how much is needed. If it tastes too salty, you are overdoing it.

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Ursa Major,

You're right of course that too much water is as bad as not enough. I did say the consensus of opinion is 8 glasses a day plus extra for extra weight - mind you, the consensus doesn't seem to say how big the glasses should be!!!

I reckon I really ought to be drinking at least 2 liters a day, but I actually struggle to drink 1 liter - even though my mouth is always dry - even when I have a mouthful of water!

My body has always seemed to interpret thirst as hunger for some unfathomable reason - perhaps because I have never drunk enough to trigger the thirst reflex!?

Diane - so that is why I am always busting when I get out of the pool??? LOL! :lol:

I have visions of all us water-retentive people reading this going into our bathrooms all over the world and immersing our heads into buckets of water just to see if it works!!!!

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Hi, I'm new here. I was wondering if anyone else has water retention or edema as a part of their celiac disease or gluten intolerance? My primary complaint is puffy eyelids and puffy fingers in the morning. Am I alone in this? Perhaps it's not even related to my gluten intolerance? Anyone have a similar experience? Thanks for any help/advise you can give!

Hi, I am new here too. I swell horribly if I get gluten. This morning I woke up and could bend my fingers. I looked at the soup we ate last night and it had changed formulation. My eyes were swollen and my hands were itchy.

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Hi Kritter,

YES!! YES!! YES!! What looks like obesity seems to be a side effect of celiac. I retain water like a sponge - eyes and face, hands and ugly dimpled pockets in my legs above my knees. Within a few days of going gluten-free I could see the swelling was going away and could feel firmness to my muscles and my jaw bone came into view!

I have not yet been diagnosed with Celiac but am 99.9% certain I have it. I am seeing my Dr. again in a few weeks and will be begging for a scope along with the blood test. I have been gluten-free for about 4 weeks now and am feeling terrific and very happy to have my life back after 30 years of worsening symtoms.

I am not looking forward to eating gluten again to get the antibody levels up before I go for the blood test and scope but if it means a diagnosis for myself and my family it will be worth it.

Good luck to you and everyone in this forum in feeling good everyday :)

I am new here and am so thankful for it!

Quitncurl

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Hi, I'm new here. I was wondering if anyone else has water retention or edema as a part of their celiac disease or gluten intolerance? My primary complaint is puffy eyelids and puffy fingers in the morning. Am I alone in this? Perhaps it's not even related to my gluten intolerance? Anyone have a similar experience? Thanks for any help/advise you can give!
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Hi

I had the entire Celiac workup 2 years ago. I had pitting edema on my legs, arms, hands, and sometimes my face. I could push and leave a dent I could pour water in and would stay until I rubbed it out. I was anemic and had been for quite some time. I had suggestive bloodwork, but not what they called definitely postivie. I had thyroid issues, insulin resistance, and some other things associated with celiac disease. My biopsy was negative. The GI doctor said it was not celiac disease since I had a negative biopsy. I then went to see a celiac specialist who is nationally known and she felt strongly I had celiac disease and put me on a gluten free diet. It all went away. It has been 2 years and the doctor had said after 6 months I could eat gluten for one day and see what happened, but I never did. Today I decided to try it. I am swollen to the point where it hurts to move my joints and I feel the swelling in my face when I blink my eyes. It is definitely the gluten. No more for me....ever! The funny things is....the foods I haven't been able to eat for 2 years did not taste as good as I remembered.

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    • Mashed potato soup during healing
      I was on pretty much a liquid diet for 8 months waiting for my nausea to go away completely. I mostly had mashed potato soup, 1/2 fat ice cream (mostly whey, not milk), chocolate drink (no added milk) and gummy vitamins. The soup tasted yummy and I'm still alive so I figured I'd share it for people not feeling well in the beginning. I've been noticing people with alot of trouble keeping food down in recent posts. I couldn't have milk or eggs, but the cheese in the recipe didn't bother me at all. Notice the lack of spices. Makes it easy on the stomach.   Mashed potato soup: Boiled yukon gold potatoes (5lb bag) 1 package cauliflower, steamed 4-6 slices of Land O'Lakes white American cheese 4 tablespoons butter salt 16 cups homemade chicken broth, salted   Chop steamed cauliflower into teensy bits (pureed is better). Put in mixer with butter, cheese and a potato or two. Blend while slowly adding potatoes. Keep whipping for a few minutes to insure the cauliflower and potatoes are not lumpy at all. Salt to taste.   Combine 1/2 cup mashed potatoes to 1 cup salted chicken broth. Mix with spoon until mashed potatoes have completely dissolved. Enjoy. Individual servings can be frozen.   Homemade chicken broth: makes 8 - 10 cups of broth   1 organic chicken (regular chickens are too big) 1 stalk celery 1 carrot 1 large bay leaf 1/2 package fresh thyme from the  herb section of the vegetables area   Put all ingredients in pressure cooker along with 1.5 liters water. Bring to pressure. Cook for 35 minutes. Separate broth from solids. Separate broth from fat. Add ridiculous quantities of salt until it tastes like soup. Sorry I use a salt grinder so I don't have precise salt quantities.    
    • Celiac.com: Gluten-free options increasing to meet demand
      “Over the last 10 years there's been an explosion of gluten-free products,” said Shelley Case, a registered dietitian specializing in celiac disease and ... View the full article
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    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
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