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

9 Days Gf - Swollen Hands, Feet & Ankles


ChrissyInNH

Recommended Posts

ChrissyInNH Rookie

Hi all,

I have been gluten-free for 9 days and I notice that my hands, feet and ankles are rather swollen - especially in the morning when I get out of bed. Is this normal at this stage? Also, it's after 9 pm and my ankles are still a bit swollen. I just thought it was weird.

One more thing... (hope you don't mind)... My husband and I had pizza on a pre-made rice crust for dinner and now my throat feels tight and scratchy. Has anyone experienced this? I don't know if it was the food or if I'm coming down with something.

Thanks so much! I hope you all are feeling well tonight! :)

Christine


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



Celiac.com Sponsor (A8-M):



Guest jhmom

Hi Christine !!

I don't know about those symptoms maybe you should get it checked out by a doctor or at least call and talk to a nurse. :)

JsBaby-G Newbie

Chrissy,

I haven't experienced symptoms quite like that but my hands get swollen sometimes and I discovered that I have poor circulation (not sure if that's due to Celiac..I don't think so though) I do agree with jhmom you should get that checked out. About the pizza I know that some people have similar reactions to gluten maybe the sauce had some gluten on it?

Good Luck!! :huh:

  • 2 weeks later...
ChrissyInNH Rookie

Hi again,

I am now almost 4 weeks gluten-free and I am still having this weird swelling symptom. It's not just in my limbs - but in my face and elsewhere. I didn't think too much of it, but this morning I realized that this is the same feeling I had when I was at the end of my pregnancy and had HELLP syndrome (severe pre-eclampsia). I'm wondering if my blood pressure is high? I usually have very low blood pressure and the only time it was high was when I pregnant as stated above. I had the same puffy feeling.

I have noticed I have more color in my skin. I think I'll scoot down to the grocery store blood pressure machine just to see what it says. If this keeps up I will certainly call my doc - but I am self-diagnosed and she already thinks I'm a wacko. I KNOW I have this disease though. I have 80% of the symptoms. My blood tests were normal but one of them was just under by 1.2 points. I am on hydroxychloroquine (Plaquenil) for probably lupus and other antibody issues. Is it possible that the medication I am on - which is meant to help bring antibody counts down - could have reduced my anti gliadin antibodies as well?

Anyway, thanks for all of your insights. I think it would be very weird if I went gluten-free and all of a sudden my blood pressure was high. The only thing I can think of is that my body was so undernourished it's having a hard time readjusting to having nutrients? My poor little blood vessels probably don't know what hit them!

Also, I should note that after losing about 60% of my hair, it is all growing back!! I am so excited!! Also, my nails are growing out smoother with less ridges. My skin is softer than ever. I had no PMS last month. I have more strength and energy. The list goes on! My son (22 months) is gluten-free too and he has a whole new personality and no diarrhea! I am really excited and I think I am convinced enough now that I will go buy a bread machine. :D

ChrissyInNH Rookie

Okay, I went to the new WalMart down the road and took my BP at the machine. It was totally fine. So that's good! At least I don't have to worry about that anymore. It must just be some water weight. Hopefully it'll go away soon.

Hope you are all feeling well today!

Chris

Nin Newbie

Chris,

Glad you are feeling fine. I too sometimes get water retention in the feet/legs.

I notice it more so when I have been exposed to gluten. I suspect our bodies are ridding us of toxins from the gluten and this means the liver and kidneys have more work. So probably drinking lots of water, and lemon in water could be helpful.

A lot of what you described in your earlier email in terms of improvements have been what I have experienced. So i think you are on the right track, I think it just takes some time. I have been working on this since June of last year.

best, Nin

LisaP Explorer

One of my symptoms when I was diagnosed with celiac disease was swollen ankles. I have been gluten free, as best I can tell, for about 1 1/2 months and I can tell my ankles are fighting to stay down. One is fine and the other sometimes feels like a rubber band is around it, but it never swells like it did when I was not gluten-free. And somedays they are almost completely down. Go figure.....

Anyway, I think they do swell when I get a small amount of gluten on accident, but I also noticed they swell with certain other things, such as an IBC Cherry Limade Soda which I called about before I drank. I think I had a reaction to the red dye! I also had some problems with wine....I now know to check and make sure the wine has no sulfides. Bottom line is that I have decided more than just gluten causes my swelling. I also noticed that when I stayed up late one night, the longer I stayed up, the more I could feel that rubber band around my ankles. I have also challenged myself with some of the gluten-free foods that gave me trouble soon after my diagnosis and although I had a minor reaction, it was alot less than in the beginning. So, I am voting that my body is healing on the gluten-free diet and that I am able to tolerate more.

I do know that one area of my small intestine was so inflammed when I was diagnosed officially with celiac disease, that we did a biopsy to confirm that there was no cancer, etc. Good news is that there was not anything other than celiac disease. Yeah! But, I know that particular part of my intestine's is very sensetive, and that somehow it is connected to my ankles. I am hoping that in months to come, this will go away as my gut heals.

Also, Doc originally put me on a steriod to make ankles go down completely, but I am not very hip to that idea. And since it is only minimal now, I do not see any reason for returning to the steriod.

I do not know if this has anything to do with your swelling, but I am one more celiac disease patient with swollen ankles. But hopefully not for much longer. I plan on healing and attacking this disease with everything I have got. I plan on having fun and enjoying food safely.

I hope your swelling goes away and you can feel "normal" again. ;)

Live each day to the fullest.....even if that means taking it easy and just smelling the roses.


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



Celiac.com Sponsor (A8-M):



LisaP Explorer

How does lemon in the water help? I drink lemon water b/c I like the taste, but how is it better than just plain water for swollen ankles?

Nin Newbie

Drinking lemon squeezed in warm/hot water first thing in the morning helps clean your liver etc, and helps your body detox. My grandfather drank this every morning, and I suppose those old fashioned remedies had a reason behind them that people didn't always fully understand but knew they were good.

:D

  • 6 years later...
cashman19 Newbie

Greetings fellow Celiacs,

I was diagnosed on Jan 14th and been experiencing the swollen ankles, (and feeling a little puffy in general) as well? Is this a normal Celiac symptom? I feel I've been doing a good job adhering to the gluten-free diet, the only thing I've eaten that wasn't prepared by me was a baked potato at Wendy's but that was two weeks ago and I didn't seem to have any reaction to it. My feeling is that perhaps I was using too much salt in my food to make it taste better. So, I've cut down on the sodium considerably the last few days but no change in the swelling. I eat a lot of celery and carrots through the day and always have some fruit and I drink a good deal of water. Is this some sort of gluton reaction that I may be getting unknowingly?

I'm a newbiw to all this so thanks for any help and guidance you can give me.

-Cashman 19

hnybny91 Rookie

To the OP - are you sure the RX you take doesn't have gluten in it? Have you checked with your Pharmasist?

GFinDC Veteran

Hi Cashman,

This thread started in 2004 so not much chance the OP is still reading it.

I had swelling in my ankles for years prior to going gluten-free. IT got better going gluten-free, but didn't go completely away until I got off soy also. So, just saying that gluten and other foods can cause swelling, along with other things of course.

Welcome to our gluten-free world! :)

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. - Iam replied to Larzipan's topic in Related Issues & Disorders
      33

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    2. - trents replied to Scatterbrain's topic in Sports and Fitness
      6

      Feel like I’m starting over

    3. - bobadigilatis replied to Larzipan's topic in Related Issues & Disorders
      33

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,307
    • Most Online (within 30 mins)
      7,748

    Hcon74
    Newest Member
    Hcon74
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Iam
      Yes.  I have had the tmj condition for 40 years. My only help was strictly following celiac and also eliminating soy.  Numerous dental visits and several professionally made bite plates  did very little to help with symptoms
    • trents
      Cristiana makes a good point and it's something I've pointed out at different times on the forum. Not all of our ailments as those with celiac disease are necessarily tied to it. Sometimes we need to look outside the celiac box and remember we are mortal humans just like those without celiac disease.
    • bobadigilatis
      Also suffer badly with gluten and TMJD, cutting out gluten has been a game changer, seems to be micro amounts, much less than 20ppm.  Anyone else have issues with other food stuffs? Soy (tofu) and/or milk maybe causing TMJD flare-ups, any suggestions or ideas? --- I'm beginning to think it maybe crops that are grown or cured with glyphosphate. Oats, wheat, barley, soy, lentils, peas, chickpeas, rice, and buckwheat, almonds, apples, cherries, apricots, grapes, avocados, spinach, and pistachios.   
    • cristiana
      Hi @Scatterbrain Thank you for your reply.   Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct.   Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two, following my diagnosis - I pinned everything on coeliac disease, but it turns out I wasn't always right!  Dizziness, lightheaded - I was eventually diagnosed with cervical dizziness (worth googling, could be your issue too, also if you have neck pain?)  A few months after diagnosis I put my neck out slightly carrying my seven-year-old above my head, and never assigned any relevance to it as the pain at the time was severe but so short-lived that I'd forgotten the connection. Jaw pain - stress. Tinnitus - I think stress, but perhaps exacerbated by iron/vitamin deficiencies. Painful ribs and sacroiliac joints - no idea, bloating made the pain worse. It got really bad but then got better. Irregular heart rate - could be a coincidence but my sister (not a coeliac) and I both developed this temporarily after our second Astra Zeneca covid jabs.   Subsequent Pfizer jabs didn't affect us. Brain fog - a big thing for people with certain autoimmune issues but in my case I think possibly worse when my iron or B12 are low, but I have no proof of this. Insomnia - stress, menopause. So basically, it isn't always gluten.  It might be worth having your vitamins and mineral levels checked, and if you have deficiencies speak to your Dr about how better to address them?    
    • knitty kitty
      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy.  Benfotiamine and other forms of Thiamine do not bother me at all.  There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes.  The sulfur in thiamine is in a ring which does not trigger sulfa allergy like sulfites in a chain found in pharmaceuticals.  Doctors are not given sufficient education in nutrition (nor chemistry in this case).  I studied Nutrition before earning a degree in Microbiology.  I wanted to know what vitamins were doing inside the body.   Thiamine is safe and nontoxic even in high doses.   Not feeling well after starting Benfotiamine is normal.  It's called the "thiamine paradox" and is equivalent to an engine backfiring if it's not been cranked up for a while.  Mine went away in about three days.  I took a B Complex, magnesium and added molybdenum for a few weeks. It's important to add a B Complex with all eight essential B vitamins. Supplementing just one B vitamin can cause lows in some of the others and result in feeling worse, too.  Celiac Disease causes malabsorption of all the B vitamins, not just thiamine.  You need all eight.  Thiamine forms including Benfotiamine interact with each of the other B vitamins in some way.  It's important to add a magnesium glycinate or chelate supplement as well.  Forms of Thiamine including Benfotiamine need magnesium to make those life sustaining enzymes.  (Don't use magnesium oxide.  It's not absorbed well.  It pulls water into the intestines and is used to relieve constipation.)   Molybdenum is a trace mineral that helps the body utilize forms of Thiamine.   Molybdenum supplements are available over the counter.  It's not unusual to be low in molybdenum if low in thiamine.   I do hope you will add the necessary supplements and try Benfotiamine again. Science-y Explanation of Thiamine Paradox: https://hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/#google_vignette
×
×
  • 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.