• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      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
0
Greengal

Edema And Celiac?

Rate this topic

Recommended Posts

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

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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 :)

Share this post


Link to post
Share on other sites

My specialist says that edema is part of Celiac.

Blessings,

Lily

Share this post


Link to post
Share on other sites
Guest shar4

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites
Ads by Google:


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

Share this post


Link to post
Share on other sites

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..

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      108,949
    • Total Posts
      943,643
  • Member Statistics

    • Total Members
      67,318
    • Most Online
      3,093

    Newest Member
    Nitucha
    Joined
  • Popular Now

  • Topics

  • Posts

    • The thing is.  They didn't have to say anything about gluten free food.  They didn't have to put that mean-spirited dig in there at all.  They could have just showed the awesome thing for serving food.  People with food sensitivities would have just substituted gluten-free or peanut free food in their minds.  Just like anyone would have said - I hate cucumbers - so my party tray won't have that on it.
    • Thank you so much! So is the positive IgG pretty indicative of celiac (could it be anything else)? I havent read any of those posts on diet, so I’ll have to start. Honestly, I’m happy to start gluten free. At the start of this, I was so bummed out that I’d have to give up foods. But confirming that it is gluten making me sick, I don’t want to eat it anymore. Kind of nice I got a “farewell to gluten” tour but so happy it’s over. Unfortunately, there is only one office here in Asheville, NC and it’s renowned for being awful (just look at the reviews!!) I’m on Nashville a lot for work, so maybe I can look for a good doctor there instead. 
    • So PC is not celiac pc? I'm sure fictitious  "Tina" in the ad will discard her "immature anti celiac ad friends" like used napkins and find new friends that are less grossed out by her autoimmune disease.  Or perhaps fictitious "Tina " will patiently educate the baffon friends in the ad. Tina's choice. Another company made a bad choice to join the gluten dude list of celiac bashing in the public media  Hey PC want to attempt to get out of dog house ? contact me for where to send my check For your next marketing idea/ script for your commercial  Your next commercial show two tables one designated gluten-free and one non gluten-free show 2 different color coded themes one gluten-free and non gluten-free example red for gluten-free and black non gluten-free ( whatever game day team colors- catch my drift) showing gluten-free cake served on red plate and non gluten-free cake on other table on black plate. Yo support celiac awareness and safety. this marketing tip per AWOL  contact me for my royalty checks  👍  
    • .....damn I thought I had run into stupid doctors on my own, yours flip flop more then a ADHD kid and I should know that one. Yep celiac and gluten-free for life....get copies of all your POSITIVE test and compile them in a folder, write the others off as doctor stupid was tripping on acid. Get copies of all your medical records and personally take them to a new doctor....might want to look through them first and make sure the idiot did not put anything in there wrong. Well if you can anyway......
      Congrats on the diagnosis and sorry you found one of the idiots, you get those a lot in life just sucks when it is someone in charge of your well-being and health like that. I take it you have already been through the newbie 101 thread and gone to a whole foods diet to boost up the healing, cleaned out the kitchen and set for the haul.  
    • Also I should add that in the 12 weeks, my vitamin d plummeted and now am deficient. Would you guys accept a celiac diagnosis (I am pretty confident that I have it- I was sad before the challenge that I couldn’t eat gluten anymore. Now after the challenge i am EXCITED to never eat it again as I feel like such crap now) or can a positive diamodated Gliadin  IgG indicate anything else? Or is it specific to celiac? I am happy to get a diagnosis,  but want to make sure it’s the right one. I wish I trusted my doc more (example- 3 days ago they called and said congrats, no celiac, u can eat gluten!! The doc signed off on it. But I looked at my results and pointed out that the deamidated IgG levels were not reported yet. The doc said whoops my bad. The next day they came back positive and I got another call & they said, nevermind, no gluten, you’re positive! They are idiots). 
  • Upcoming Events