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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.

Edema And Celiac?
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7 posts in this topic

Hello everyone,

I'm getting very frustrated as I research the information on this website because it seems like I have a lot of the symptoms of celiac yet my doctors keep saying that it's likely not celiac because I'm "not thin enough." I've lost about 15 lbs in the last month and a bit (without trying) but I'm still slightly overweight for my build (maybe 10lbs or so) and they say becuase of this is likely not celiac.

Anyways, I noticed that edema is a symptom and this really intrigues me, because for as long as I can remember I've had severe edema in my calves and ankles. No doctor has been able to figure it out, they just get really surprised when I show them my legs and say I must have been built like that. I've even had a doctor say I look like I have the legs of a 300 lb woman (I weigh about 150) but no one does anything about it.

What about celiac causes edema? Is it a constant edema because my swelling has been there for at least 5 years. Also, I have a persistent reddening of the face and neck, especially when I get slightly agitated or stressed, I'll get really red and blotchy, not just "blushing" but really severe.

These are on top of my other symptoms which are pretty much chornic diarrhea and abdominal pain.

Does this sound likely to be celiac? I had to push really hard for the blood work so I'm worried about what to do if it comes back negative? Should I push for an endoscopy or leave well enough alone? The docs keep saying that it's IBS, and I've been following a diet recommended for IBS (no red meat, dairy, caffeine, carbonated beverages, low fat) for a month and a half with zero improvement, which is part of the reason I think it may be celiac.

Sorry this is so long, I'm just getting desperate to figure out what's going on.

Thanks,

Kelly

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Hi Kelly,

When did you have the blood test done? It usually takes about a week to get the results, so I would wait until then to make any decisions. You may very well test positive and then a biopsy would probably be a good idea.

I personally don't know about edema all that much, but I know that what you described for the length of time you have had it is not normal. I can understand why you are so frustrated and worried. I hope your tests come back soon with some answers. Doctors need to realise that not all Celiacs are underweight. Most think that you have to be thin as a rail to have Celiac and that is just not true. The edema is certainly an indication of something not right in your system, so if I were you I would not stop pressing the doctors for testing until you get some answers.

God bless,

Mariann :)

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My specialist says that edema is part of Celiac.

Blessings,

Lily

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Hi all,

I can only add my experience. I had noticed for at least a year and a half prior to diagnosis. that my feet would swell. Not every day, some days more than others, but when they did swell, they got pretty big. I knew that it was not normal, but didn't take the time to ask about it.

Since going gluten-free, that has all but disappeared. Once in a great while, there may be a very slight bit of puffiness, but nothing compared to what it used to be like.

I'm just glad that I don't have it anymore.

Best to all

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Hello Kelly,

Have you had your thyroid levels checked lately? Have thyroid problems myself, I know that swollen ankles and feet are a one of the symptoms, as are bowel problems as of course are palpitations, weight gain or loss depending on hyper or hypo.

Best of luck to you.

SharonP

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Kelly,

Do a google search for edema and malabsorption (also try hypoalbuminemia and malnutrition) and you'll get all sorts of sites with explanations on how celiac (if this is what you have) could cause edema.

Basically, if you're not getting enough protein, either taking it in (think of what starving little kids look like) or absorbing it (celiac), your blood can't hold water so it leaks into other tissues. Also note in these articles that you can be normal weight and be protein deficient.

Happy reading!

Heather

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Hi Kelly,

I too have had the edema and face and neck flushing. About 10

years ago the medical doctor found a "goiter" in my neck.

I was sent to an endocrinologist who found a nodule on

my left thyroid gland. I had surgery to remove it, it was benign,

and the surgeon said that my thyroid was "attacking" itself,

another type of autoimmune disorder. Well to make a long story

short, I have to take levoxyl to keep the same thing from happening

to the right side of my thyroid, I still get the redness mostly if

I am angry or nervous. The other Dr. said that the edema can be from

hormonal imbalance. I was going thru menopause and all the

stress probably triggered my GI problems. Hope you find answers to

your questions..

I just wanted to add that I don't have celiac disease, but I do have a wheat allergy

and I have been on gluten-free diet for about 5 mos with some improvement,

but not there yet..

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