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

Anyone Here Suffer From Inflammation?

AVR1962

By AVR1962
in Coping with Celiac Disease

Recommended Posts

AVR1962 Collaborator
AVR1962
Posted
  • Author

Hi AVR1962, my goodness you could be describing the pain I had almost to the letter. I was struggling to remember the exact path of it but the knee wrapping and the feeling like your toes were going to fall off (I was skiing with the worst of it and honestly I thought I have severe frost bite!), the ball of the foot felt like it was protruding out in to the bottom of my boot. There are a number of exercises I was given to stretch the nerve out. The most useful of which was to put a phone directory (here they used to be thick!) on the floor and put your toes (in shoes) on the side of the directory and then relax your heels back to the ground. That should help stretch out the bottom half of your leg.

Then the other one, for the ankle, toe bit I can't describe really without actually doing it! It involved sitting with your bad leg up on a sofa stretched out, other leg on the floor. point your toes as far as you can on stretched out leg and then inwards (pigeon toed we call it), lean forward until you are as far forward as possible without causing pain and then bring your head to your chest. if you are doing it properly you should feel your whole sciatic nerve from your back to your ankle/toes. If it hurts too much then sit up a bit straighter and try nodding again! Do this very slowly! It took a while for this to work for me, a few months but eventually the pain went away when doing things like running. However as I haven't been skiing I can't tell if it has been a complete success.

Caroline, I will add these stretches to my routine and see if they make a difference. Thank you taking the time to describe these.

  • 3 weeks later...
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


AVR1962 Collaborator
AVR1962
Posted
  • Author

I really hate to say this, but it sounds like the way my foot feels when my arhtiritis flares. :(

I'm bringing an old post back to life. Mushroom, can you describe to me what your foot feel like when your arthritis acts up and does it stay with you day and night for months or can ou get relief?

This pain in my foot is not going away. My back is good, no more stiffness. My back feels in place and despiet that my sciatic nerve is still giving me issues. It is now pulsing behind my knee, hurts to sit. Docs gave me pain killers which I didn't want to take but I tried and had a reaction to the pain killer. Next appt with doc he is supposed to do a ciomplete back work-up thinking the problem in my oot is the sciatic nerve. The suggested exercises did not work.

I cannot continue to do this, am going to try and get into doc today.

mushroom Proficient
mushroom
Posted

I'm bringing an old post back to life. Mushroom, can you describe to me what your foot feel like when your arthritis acts up and does it stay with you day and night for months or can ou get relief?

My foot problems started with the feeling that there was a big round stone in the front of the ball of my foot between the ball and the toes, and it was incredibly painful to walk on. Then I began having swelling in my toes (and my index fingers and thumbs), following by shooting, elecrical-type pains into the toes and fingers. No relief. Stiffness in the mornings, two hours to get showered and dressed. I was put on DMARDS (methotrexate, Plaquenil, sulfasalazine, diclofenac, leflunomide. Some of these worked but darned near killed me in the process. I am now on Humira (TNF-inhibitor) which has its own little joys of suppressing the body's ability to fight infection so you have to go off it when you have an infection. I am lucky that I can tolerate a while off it (supposed to inject it every two weeks), but was off it for four months last US summer because of various infections, so now my psoriasis has flared again. Thank goodness, touching wood, no shooting pains or lumps in balls of feet. :)

I have no idea if this bears any relationship to what you are going through - just my experience. I am RF negative, as are lots of people with psoriatic arthritis - how about that? Two autoimmune diseases wrapped into one :rolleyes:

CR5442 Contributor
CR5442
Posted

Hi AVR, really sorry that the excercises are not working. Have you had any physio? The other two things that may help are acupuncture (always a great one for pain that the doctors cannot resolve with drugs!) and ultrasound treatment. Can you get acupuncture through your german doctor's surgery? I know they are very in to alternative therapies there.

AVR1962 Collaborator
AVR1962
Posted
  • Author

Hi AVR, really sorry that the excercises are not working. Have you had any physio? The other two things that may help are acupuncture (always a great one for pain that the doctors cannot resolve with drugs!) and ultrasound treatment. Can you get acupuncture through your german doctor's surgery? I know they are very in to alternative therapies there.

Caroline, I am seen at a military base hospital for most opf my care, sometimes they send me to a German doc. I was able to get an appt for Friday so I am really hoping that we can get something going on this. Acupucture might be work a try. I did some research on herbs last night and will try them as well. Today I was even thinking maybe I just need to try and move more. I have been laying back on exercise partly due to weather but my foot has been rather painful for quite some time. I did 30 minutes on my treadmill and it didn't kill me, it felt like it almost numbed my foot. Then I soaked it for a good 10+ minutes in hot water. Some where, some how there has to be a way to relieve this and find out what is going on with this foot.

pricklypear1971 Community Regular
pricklypear1971
Posted

I'm sorry you're in so much pain.

I had awful plantar fasciitis for years from my Hashis. I took a yoga class and she had yoga balls and they were great for concentrating pressure in my back and other hard to reach areas. I especially love the spikey yoga balls - half circles with rubber spikes that you step on. I still use these if my feet or legs hurt, even my back. It's a little bit of pain that feels sooooo good.

Sometimes I feel my feet are horribly misaligned (I have foot injuries also) and I step on those things and they pop everything back in place and I can feel my back align and relax.

AVR1962 Collaborator
AVR1962
Posted
  • Author

Thanks ladies for the replies, gives me more thoughts when I see the doc on Friday!

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

Celiac.com Sponsor (A8-M):


AVR1962 Collaborator
AVR1962
Posted
  • Author

Doc thinks it is planters fasciitis. Had xrays today and have a referral to pediatry.

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. ShariW
      - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

      In addition to gastrointestinal symptoms like diarrhea, I had gastroesophageal reflux that was becoming intolerable despite treatment with PPIs and antacids. When I went gluten-free, the GERD lessened tremendously (as did the other symptoms).
    2. klmgarland
      - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

      Thank you so very much Scott. Just having someone understand my situation is so very helpful. If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    3. Scott Adams
      - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to ...
    4. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating...
    5. Scott Adams
      - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748
    ebrown
    Newest Member
    ebrown
    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

    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      Help I’m cross contaminating myself,

      By Scott Adams · Posted

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      My only proof

      By Scott Adams · Posted

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisone treatment for inflammation?

      By Scott Adams · Posted

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      I think I am gluten intolerant

      By Scott Adams · Posted

      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • 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.