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

Problem With Swelling?


dakota girl

Recommended Posts

dakota girl Rookie

I have intermittently had some pretty intense swelling of my feet/legs-no heat, no real pain except for the discomfort of swelling (tight feeling, bloating, sorer knees). Has anyone else had this? I'm randomly wondering about diet Coke, natural flavorings, MSG? I'm really pretty vigilent about labels, but wonder if there is something I don't know. I'd appreciate anything you can think of/have experienced that sounds like it would fit!


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



Celiac.com Sponsor (A8-M):



sahm-i-am Apprentice

Severe pitting edema (swelling of both legs and feet) was the thing that sent me to the doctor 3 months ago. It is what led to my celiac disease diagnosis. But before the actual diagnosis my GP put me on diuretics and that helped alot. I have been gluten free for 3 weeks and haven't taken my diuretics since then and I haven't had as much swelling. They say that when your body chemistry is off it shows in strange ways. My body was lacking in certain vitamins and minerals from malabsorption that caused the swelling. Maybe you could have your blood drawn for some testing to see if something is off.

I hope it gets better soon. I hated that I couldn't wear comfy shoes and even my jeans started to get tight in the legs. Take care,

Wendi

GFinDC Veteran

I read a while back that swelling is a symptom of allergic reactions. so, maybe you should take a look at possible food triggers for the swelling.

The thing is, your body is your own, not anybody else's. You could react to something that I have no problem with at all. So you really would need to eliminate anything that you react to, not what other people react to.

A good starting point would be to eliminate all the top food allergens. You can find a list by searching on top food allergens.

That's a good way to find common allergens to eliminate. But you could have others that aren't on those lists. We are not all exactly the same. :)

kayo Explorer

I have swelling but I also have RA and they tend to go hand in hand. I seem to have less swelling since going gluten-free but it still happens now and then. For me humid weather or flying tends to puff them right up.

Some things that help: watch your salt intake, drink plenty of water and elevate your feet when you can.

An anti-inflammatory like Alleve would help too if it becomes too uncomfortable.

Bobbijo6681 Apprentice

I had severe swelling in both of my feet and legs and it wasn't really "painful" but more of an annoyance, and uncomfortableness with walking. I was diagnosed with B12 defiecency and once I got my levels back up the swelling went down. This was before my Celiac Diagnosis (should have had a doctor with half a brain then) and I have not had any problems since, and only take my B12 supplement when I have been glutenned or am having an "icky" tummy day as I call it.

Not sure if this will help you, but just a thought.

K8ling Enthusiast

I have swelling too, although it isn't as severe as yours is! I'm so sorry you have to deal with that! My doctor told me that MY swelling is a result of my allergic reaction (I also get hives when I get glutened).

I really hope they can find a solution for you. Maybe it IS the Diet Coke?

  • 3 weeks later...
dakota girl Rookie

Thanks for all your input. If I've learned anything, it is that this disease rears its head in numerous ways. It would just be nice to have the easy fix one time, rather than playing the guessing game. I have resorted to occasional diuretics while I start the process of elimination one more time.

I do have another question...I know Aleve is on the safe meds list, but has anyone reacted to it? I took it for a month (hoping to end the Tylenol gig) and ended up with a stasis dermititis rash on one shin...related?


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



Celiac.com Sponsor (A8-M):



Mari Enthusiast

I can't tolerate alleve and use tylenol and take turmeric as an antinflammatory.

Years ago I would have episodes of painful swolen ankles and feet. It turned out to be a delayed allergic reaction to cow's milk. I've been gluten-free and casein free for more than 4 years and recently ate some butter cookies and my ankles swelled after 3 days. The swelling goes down rapidly if I wrap may feet and ankles with ace bandages.

  • 6 years later...
jantwins Newbie

Hi I am just going through being diagnosed. I went to doc with severe swelling of feet. 4 weeks down the line I now have severe swelling of both legs and my stomach. In pain and stiff. Using diuretics but not helping much. How long after going gluten free did swelling end? Strong positive on blood test, waiting for biopsy but really beginning to struggle 

ravenwoodglass Mentor
29 minutes ago, jantwins said:

Hi I am just going through being diagnosed. I went to doc with severe swelling of feet. 4 weeks down the line I now have severe swelling of both legs and my stomach. In pain and stiff. Using diuretics but not helping much. How long after going gluten free did swelling end? Strong positive on blood test, waiting for biopsy but really beginning to struggle 

Have you been back to see your doctor since the swelling spread? If not please call the office in the morning.  Are you still on gluten waiting for the biopsy?  You need to be otherwise the biopsy runs a higher risk of being a false negative. You might want to ask if you can go onto the cancellation list for the endo if you would be able to get there on short notice. With strong positive on the blood test chances are very good you have come to the right site to help you through the changes you will need to take after your biopsy is done.

Archived

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

  • 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. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

    2. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

    3. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

    4. - catnapt posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

    5. - trents replied to McKinleyWY's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Accuracy of testing concerns

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,256
    • Most Online (within 30 mins)
      7,748

    Christie Fassel
    Newest Member
    Christie Fassel
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • trents
      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
    • trents
      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
×
×
  • 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.