Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Celiac And Edema (In So Much Discomfort!)

Emilem

Recommended Posts

Emilem Apprentice
Emilem
Posted

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!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


pricklypear1971 Community Regular
pricklypear1971
Posted

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.

Emilem Apprentice
Emilem
Posted
  • Author

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?

pricklypear1971 Community Regular
pricklypear1971
Posted

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

Ninja Contributor
Ninja
Posted

Hey Emilem

ravenwoodglass Mentor
ravenwoodglass
Posted

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.

Emilem Apprentice
Emilem
Posted
  • Author

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


GFinDC Veteran
GFinDC
Posted

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.

Takala Enthusiast
Takala
Posted

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.

  • 1 month later...
Carebear Apprentice
Carebear
Posted

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.

  • 2 years later...
Matthewm Newbie
Matthewm
Posted

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.

cyclinglady Grand Master
cyclinglady
Posted

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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. chrisinpa
      - chrisinpa commented on Scott Adams's article in Skin Problems and Celiac Disease
      2

      Celiac Disease and Skin Disorders: Exploring a Genetic Connection

      Maybe they can attribute certain skin conditions to either being susceptible to getting Celiac......or the other way around....but I have to ask if certain people are prone to Celiac because of genetics and some people aren't. It's kind of the same thing as what came first.....the chicken or the egg.?
    2. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      My journey is it gluten or fiber?

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities. If you are trying to add more fiber to your diet to ease constipation, considering...
    3. trents
      - trents replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Issues before diagnosis

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac...
    4. trents
      - trents commented on Jefferson Adams's article in Other Diseases and Disorders Associated with Celiac Disease
      6

      Celiac Disease Patients Face Higher Risk of Systemic Lupus

      What kind of practitioner did the blood test? Was this a medical doctor, a naturopathic doctor, a GI doc? I would certainly follow up with them and ask why they advised you not to eat red meat. I mean, it could be something like they, themselves, are a vegetarian and give that advice to everyone. Have you had an endoscopy with biopsy of the small bowel...
    5. knitty kitty
      - knitty kitty replied to EndlessSummer's topic in Food Intolerance & Leaky Gut
      2

      Dizziness after eating green beans?

      @EndlessSummer, You said you had an allergy to trees. People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits. Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease. Switching to a low histamine diet for a while can give your body time to rid itself of...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,689
    • Most Online (within 30 mins)
      7,748
    EndlessSummer
    Newest Member
    EndlessSummer
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities.   If you are trying to add more fiber to your diet to ease constipation, considering eating more leafy green vegetables and cruciferous vegetables.  Not only are these high in fiber, they also are good sources of magnesium.  Many newly diagnosed are low in magnesium and B vitamins and suffer with constipation.  Thiamine Vitamin B1 and magnesium work together.  Thiamine in the form Benfotiamine has been shown to improve intestinal health.  Thiamine and magnesium are important to gastrointestinal health and function.  
    • trents
      Issues before diagnosis

      By trents · Posted

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
    • knitty kitty
      Dizziness after eating green beans?

      By knitty kitty · Posted

      @EndlessSummer, You said you had an allergy to trees.  People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits.  Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease.   Switching to a low histamine diet for a while can give your body time to rid itself of the extra histamine the body makes with Celiac disease and histamine consumed in the diet.   Vitamin C and the eight B vitamins are needed to help the body clear histamine.   Have you been checked for nutritional deficiencies?
    • sha1091a
      Issues before diagnosis

      By sha1091a · Posted

      I found out the age of 68 that I am a celiac. When I was 16, I had my gallbladder removed when I was 24 I was put on a medication because I was told I had fibromyalgia.   going to Doctor’s over many years, not one of them thought to check me out for celiac disease. I am aware that it only started being tested by bloodwork I believe in the late 90s, but still I’m kind of confused why my gallbladder my joint pain flatulent that I complained of constantly was totally ignored. Is it not something that is taught to our medical system? It wasn’t a Doctor Who asked for the test to be done. I asked for it because of something I had read and my test came back positive. My number was quite high.Are there other people out here that had this kind of problems and they were ignored? 
    • trents
      Dizziness after eating green beans?

      By trents · Posted

      Welcome to celiac.com, @EndlessSummer! Do you react to all vegetables or just specific kinds or families of them? What you describe with green beans sounds like it has an anaphylaxis component. Like you, walnuts are a problem for me. They will often give me a scratchy throat so I try to avoid them. Does it matter if the vegies are raw or will-cooked in how you react to them?
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.