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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.

Celiac And Edema (In So Much Discomfort!)
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12 posts in this topic

To give a brief overview:

I first went to see my doctor in December 2011 because I was extremely fatigued (always falling asleep) and felt "swollen".

He couldn't explain the swelling but ran some blood tests and came to find out I am extremely anemic (iron score was 13) and low in VItamin D. I also tested positive for mono at this time.

Four months later and I am still not feeling great and the swelling has gotten worse. It is terrible in my legs and arms and face. I feel like I look 20 pounds heavier than I actually am. I have watched my weight shoot from about 120 lbs to 135lbs since this problem started (I am 5"6'). It sometimes makes my joints ache as well as the rest of my body just generally feeling heavy and making me fatigued.

My doctor told me just two weeks ago that some of my blood tests tested positive for Celiac disease but that they have to biopsy my stomach to confirm. I am going in for endoscopy in a few weeks....I have been trying to follow a STRICT gluten free diet the past two weeks (also limiting sugar to try and ease the water retention)

My question to you all, is celiac's linked to edema? Do any of you experience this problem? Did it resolve when you followed a gluten free diet and if so how long after did you start noticing a change?

I am coming to my witts end with all this discomfort and seeking relief! I hope I'll find it with this diet....any insight is greatly appreciated!

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I had an autoimmune flare not long ago and I think I gained about 10 lbs. of water. Then, poof, it went away.

Yes, one of the hallmarks of Celiac and Hashimotos is swelling. I am sure it occurs with the others, too.

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I had an autoimmune flare not long ago and I think I gained about 10 lbs. of water. Then, poof, it went away.

Yes, one of the hallmarks of Celiac and Hashimotos is swelling. I am sure it occurs with the others, too.

When you say autoimmune flare are you referring to a celiac-episode?

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Well, for me it was a Hashimotos thyroid and Celiac flare....

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Hey Emilem

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If you have had positive blood tests you need the diet BUT you shouldn't have gone gluten free until after the endo is done as that will cause a false negative. You can go gluten free for life the day of the biopsy.

Celiac can cause edema. In my case it was because celiac was attacking my kidneys but that isn't the only reason as far as I know. In my case the edema resolved within a month or so very strictly gluten free.

Use the time before you can go gluten free to learn as much as you can about the lifestyle as it does involve more than just watching what you eat. Precautions need to be taken in the way food is prepared also. Ask as many questions as you need to while you wait for the endo.

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If you have had positive blood tests you need the diet BUT you shouldn't have gone gluten free until after the endo is done as that will cause a false negative. You can go gluten free for life the day of the biopsy.

Celiac can cause edema. In my case it was because celiac was attacking my kidneys but that isn't the only reason as far as I know. In my case the edema resolved within a month or so very strictly gluten free.

Use the time before you can go gluten free to learn as much as you can about the lifestyle as it does involve more than just watching what you eat. Precautions need to be taken in the way food is prepared also. Ask as many questions as you need to while you wait for the endo.

Thank you so much for your reply. I was curious about kidney damage because before the celiac blood test my doc ran some kidney function tests and a urynalysis but everything seemed normal. Is it possible that the celiac could be affecting my kidneys even though the tests showed nothing abnormal? It is giving me hope that you say within a months time you started to see the edema subside..I obviously understand nothing miraculous is going to happen overnight...I just need to be patient. Thanks so much for your insight.

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I had swelling in my ankles and feet for many years. It varied depending on what I ate sometimes it was worse and sometimes better. The biggest thing that improved it for me was stopping all grapes. Of course I am gluten-free also. But grapes seemed to be causing a basic swelling problem that other foods just made a little worse. You may have a similar problem with some other food, or may not.

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Edema is one of my ongoing symptoms when I get cross contaminated. It also occurs when I eat certain processed foods with preservatives that are "supposed" to be gluten free, but are not actually tested and certified for "x" parts per million gluten by the manufacturer, so there is no way of knowing if the item is actually mildly cross contaminated or if I am reacting to something else in it, or a combination of both. The edema has shown up enough times from a potential gluten situation (and in the past, before I was gluten free) that I know it is at least partially a bona fide gluten reaction. One example is that I can eat a fresh version of a food item, but may then swell up in my ankles/feet from the same food that is made into a flour and then used in a manufactured food item.

I have had some real doo- whop ankle and foot swelling reactions, so in the past year, getting tired of it, and noticing it always happened after eating certain things, I have further eliminated or changed brands of more foods that provoke it, no matter what the manufacturer claims on the label. I am getting more sensitive to cross contamination as the years go by gluten free, so this boisters my suspicions that I may fall into the category of an actual, undiagnosed celiac trending towards sensitive instead of the "gluten intolerant." D*mn.

The celiac auto immune reaction could be affecting your kidneys because they are tasked with filtering your blood and trying to keep your mineral levels on an even keel, so they may be getting damaged from pulling out too much calcium. (because your bones are being robbed to make up the deficit from the gut damage not letting you use the calcium you do eat.) At my worst I always had a lot of problems with infections and protein and calcium crystals in the urine, this resolved with a gluten free diet.

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I absolutely get edema, EVERY single time I'm glutened. It's awful - in fact, I just got cc'd and I have it right now. It can take 10 days to 3 weeks after a gluten exposure for it to go away. I literally gain 8-12lbs (I've weighed) in 12ish hours. But it goes away completely. I have a separate set of clothing for when I get glutened (not kidding, I'm a size 4 normally and 8 when glutened). I actually thought I was gaining weight gradually as a "coming of age thing", went gluten free, and 10 days later I was back to my size in high school. And it wasn't because I wasn't eating, I pigged out because I actually felt good enough to eat!

I hope you find your answers. It's amazing what food can do to our bodies.

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Edema in celiac people can be almost always put down to protein malabsorption. Since we have a hard time digesting and absorbing protein, our bodies will retain water. This is a side effect of protein deficiency, and thus, of celiac disease.

To combat this, try incorporating digestive enzymes to break down protein and diuretic foods like garlic, celery, and dandelion tea (or Dandy Blend) after an exposure. Also, don't stand or sit for too long. Try to lay down and elevate your feet. Lastly, closely minute your water intake. Edema can become harmful quickly.

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Hey, Matthew!

Welcome to the forum. Some of these members not been on for a while, but I am sure there are some current members suffering from edema.

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