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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.

7 posts in this topic

I have been gluten-free for 5 years now. I have bee glutenized 4 times total in that time, and the last one was almost 2 years ago. 

Last Saturday (may 4) I woke up wit swollen legs from my knees to my toes. I thought it was odd but didn't do anything about it except elevate them.

On Sunday am I was woken up with burning, tingling fingers in my left hand. Both my hands had started to swell too, and my left hand was so swollen that I could not remove my wedding rings. (I take them off weekly for work) When I sat up, the pain started to subside, but not the swelling. This repeated 3 times until I got up at 8 am.

I went to the ER and they did blood work. They did suggest it may be Celiac related. But there is so far no answers for me and I continue to swell up.
 

Has anyone else had these symptoms? And if so, what happened and how did you treat ti? I am so swollen I can't hold a pen properly or walk normally.

 

Thanks!!

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Have you been tested since this happened for other autoimmune diseases? ALL of them?

Some people report swelling with histamine reactions and allergies. You can develop either at any point.

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I used to have lots of swelling in my ankles and feet.  It turned out to be a reaction to grapes for me.  Edema (swelling) is a typical allergic reaction.  It can happen as  reaction to any food, not just gluten (wheat, rye, barley, oats).  You may need to review your diet and see if there is anything you can eliminate that might be a problem.

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I just had bloodwork done for 8 different tests. I won't get results for a week. 

I haven't had anything different lately and it's not an allergic reaction to anything. I know how I react to allergies. 

So, I guess I continue to puff up until I hear from the Dr. My GP and the ER doc didn't think it was an allergic reaction either. But the did think it could be related to Celiac. 

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Have they checked your ortho-static blood pressure?  I have had swelling, I believe related to fluid balance and the  adrenal glands  The ortho-static blood pressure can help to discern that.

 

Diana

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My son had strange lip swelling twice.  In the emergency room they mentioned hereditary angioedema and I had him tested for it.  He was negative, but maybe that could be whats going on in your case.  I hadn't heard of it.  My son ended up with a idiopathic angioedema diagnosis.  One of those "we don't know" useless diagnoses.  He was glutened at the time, so that's my best guess as to the source.

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If other AI diseases are ruled out, I would go along Diana's lines...

I swell from AI flares. If I'm sure I wasn't glutened, then I immediately know its my thyroid - which is tied to the adrenals and hormones. So, your doc is on the right track - but It's probably because Celiac is an AI disease.

I can swell quite a bit during my cycle, and before I was on any thyroid meds I'd get quite a bit of foot/leg swelling.

I have damaged adrenals - not just from AI diseases but from steroids...and we're just now getting round to improving them. I also don't absorb my thyroid meds well, or process them well...so my endocrine system is not optimal.

As an example of how that can affect fluid retention - I've increased my t3 in the past few weeks. Too much-lots of bad things, just right - all of a sudden I'm losing puffiness I didn't know was "puff" - I thought it was fat. I have been gluten-free for 2 years - and I lost puff after going gluten-free....but wow. Had no idea I was still so puffy. And I'm still puffy (and fat).

So, endocrine/hormonal issues. It's all a loop. It's frustrating.

I will reiterate my point about getting tested for other AI diseases. The swelling could be a sign you're developing another one.

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