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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,685
    • Most Online (within 30 mins)
      7,748
    tdouglas2901
    Newest Member
    tdouglas2901
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Draft gluten-free ciders… can they be trusted ?

      By Scott Adams · Posted

      I'd go with a vodka tonic, but that's just me😉
    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
×
×
  • 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.