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

Edema And Celiac?

Greengal

Recommended Posts

Greengal Rookie
Greengal
Posted

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

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

Celiac.com Sponsor (A8-M):


gf4life Enthusiast
gf4life
Posted

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 :)

Lily Rookie
Lily
Posted

My specialist says that edema is part of Celiac.

Blessings,

Lily

Guest shar4
Guest shar4
Posted

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

SharonP Newbie
SharonP
Posted

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

hsd1203 Newbie
hsd1203
Posted

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

judy04 Rookie
judy04
Posted

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..

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,131
    • Most Online (within 30 mins)
      7,748
    Tony White
    Newest Member
    Tony White
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
×
×
  • 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.