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

Why Do I Feel Like I'm Slowly Becoming Crippled!


markhansen

Recommended Posts

markhansen Newbie

I'm hoping someone can help me or at least guide me in the right direction. I'm 35 male which I use to consider very healthy and active but the last 2 years strange things have been happening to my body and preventing me to do things that I love and live a normal life. I've been in CONSTANT pain day in and day out and it all started in my feet and slowly started migrating to my ankle, right knee, hip, achilles and between my shoulder blades. My left foot 2 years ago started with heel pain which i'm convinced was never PF, that went away but then my knee started to hurt and it's been inflammed for the past 5 months, seems it's never going to get better. My right heel started getting painful and hasn't gotten better either. It feels like it's nerve related. My arch is fine. My hip hurts.. in and around the top of the bone and the back of my neck (between my shoulder blades) hurts alot! Sensitive when i touch the spine. I get a lot of clicking in my shoulder when I try and raise my arm. it just seems like a lot of it is tendon related.

 

I've spent over 2k in chiro treatments, acupuncture... you name it! Been seeing doctors, my RF is normal range however my CRP is a bit high given my body has been inflammed.

 

I started noticing that each time that I eat something with Gluten in it.. I begin to get strange symptoms like rashes all over my arms, floaters in my eyes, difficulty concentrating (brain fog). The other night I had chinese food. 2 HRS later I couldn't get off the couch without screaming in pain. My knee and feet were very painful. I don't have any gastro issues though. My stomach is fine. I asked my doctor to test me for Celiac and he refused because I wasn't experiencing GI tract issues like cramps, pain, bloating and running to the bathroom.

 

I've been under ALOT of stress the past 3 years in my personal life and work. Could my body be starting to become gluten intolerant and not absorbing correctly?


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



Celiac.com Sponsor (A8-M):



Marilyn R Community Regular

Hi Mark, welcome to the forum.

I would switch to a new doctor (if he still refuses to order a Celiac Panel after a call to his nurse or M.A. demanding a test.)

I frequently remind my doctors to run celiac labs even if their patients don't have gastro issues. One of them ran a panel on a patient who had excruciating back pain with no other symptoms after she ran every test she could think of. The patient ended up having celiac disease.

Just bear in mind that you can go gluten-free for free to see if it helps, but you won't have the diagnosis. There are advantages and disadvantages to getting dx'd. (Plenty of posts on the forum about this topic, btw.) If you want to get tested, then you must continue consuming gluten.

I hope you get relief from your pain.

M

markhansen Newbie

Hi Mark, welcome to the forum.

I would switch to a new doctor (if he still refuses to order a Celiac Panel after a call to his nurse or M.A. demanding a test.)

I frequently remind my doctors to run celiac labs even if their patients don't have gastro issues. One of them ran a panel on a patient who had excruciating back pain with no other symptoms after she ran every test she could think of. The patient ended up having celiac disease.

Just bear in mind that you can go gluten-free for free to see if it helps, but you won't have the diagnosis. There are advantages and disadvantages to getting dx'd. (Plenty of posts on the forum about this topic, btw.) If you want to get tested, then you must continue consuming gluten.

I hope you get relief from your pain.

M

I'm getting tested tomorrow. Tonight I had 3 slices of pizza and a pita lol. Hopefully it's enough for tomorrow mornings blood test.

1desperateladysaved Proficient

I'm getting tested tomorrow. Tonight I had 3 slices of pizza and a pita lol. Hopefully it's enough for tomorrow mornings blood test.

I hope those tests will give you definitive results. Prediagnosis I did have pain that began in my feet that eventually worked its way high upon my legs.  Supplements helped with my pain.  Shortly before going gluten free I said to my doctor that "Every tissue in my body feels irritated."  I had celiac disease symptoms for 30 years and these included brain fog and extreme fatigue.  I also had painless bloating.  You can have celiac and not have diarrhea, but some doctors don't know it.  I hope you will be able to get good help and will soon be marveling because your feet don't hurt.  I have done that.

 

D

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      14

      Ibuprofen

    2. - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      My only proof

    3. - Scott Adams replied to wellthatsfun's topic in Coping with Celiac Disease
      1

      still struggling with cravings

    4. - Scott Adams replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Oh my goodness medication causing pain !!!!

    5. - Scott Adams replied to Me,Sue's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Knowing what to do when feeling unwell.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,871
    • Most Online (within 30 mins)
      7,748

    GR82BNTX
    Newest Member
    GR82BNTX
    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

    • cristiana
      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse.  But it is important not to stop the treatment.  Regarding your problems with anxiety, again that is another symptom of a B12 deficiency.   I didn't know what anxiety was until it hit me like a train several months before gastrointestinal issues began, so I can certainly relate.   Two books which helped me hugely were At Last A Life by Paul David (there is a website you can look up) and The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi.  Although his book is aimed at people who have depression, following the principals he sets out was so helpful in lessening my anxiety.  Llardi suggests we need to focus on getting enough: - physical exercise - omega-3 fatty acids - natural sunlight exposure - restorative sleep - social connectedness - meaningful, engaging activity   ... and we should feel a lot better. That is not to stay you must stop taking medication for depression or anxiety if you have been prescribed it, but adopting the changes Dr Llardi sets out in the book should really help. Can I just ask two more questions:  1) you say that you are B12 deficient, did they test your iron levels too?  If not, you really ought to be checked for deficiency and, 2) did they check your thyroid function, as an overactive thyroid can be cause rapid heartbeat and a lot of coeliacs have thyroid issues? Cristiana        
    • Jmartes71
      Hello still dancing around my celiac disease and not getting medically backed up considering Ive been glutenfree since 1994.All my ailments are the core issue of my ghost disease aka celiac disease. Im angery because the "celiac specialist " basically lightly dismissed me.Im extremely angery and fighting for a new primary care physician which is hard to do in Northern Cali.So currently without and looking.Im angery that its lightly taken when its extremely serious to the one who has it.My only evidence is a brochure back in the days when I got news letters when I lived at my parents.It was published in 1998.I was diagnosed before any foods eliminated from my diet. Angery doctors don't take seriously when Im clearly speaking.I did write to the medicine of congress and have case number.
    • Scott Adams
      I totally get this. It's absolutely a grieving process, and it's okay to feel gutted about the loss of those simple joys, especially at 18. Your feelings are completely valid—it's not about being ungrateful for your amazing boyfriend, it's about mourning the life you thought you'd have. That "tortured by the smell" feeling is so real. It does get easier, I promise, but it's okay to sit in the sadness and just vent about how much it stings right now. Thanks for sharing that. Celiac.com has published a book on our site by Jean Duane PhD called Gluten-Centric Culture, which covers many of the social aspects of having celiac disease: This chapter in particular covers issues around eating with family and others - Gluten-Centric Culture: Chapter 5 - Grabbing A Bite Together:    
    • Scott Adams
      Many of us with celiac find that the fillers in medications can cause a reaction, and sometimes our bodies just process things weirdly. That "rebound muscle pain" and "burning feet" you described sounds awful and is a huge red flag. It's frustrating enough managing the diet without medication causing setbacks. So sorry you're dealing with this, but you're definitely on the right track by connecting the dots. You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      It's so tough when you're doing everything right and still get hit with it. I'm glad you're figuring out a system that works for you—the peppermint tea and rehydration powders are smart moves. It sounds like you've really learned to listen to your body, and that's half the battle. Sticking to simple, safe food at home is the best way to build yourself back up. It's great you can take the time to rest properly. Thanks for sharing what works; it's a big help to others figuring this out too. This article, and the comments below it, may be helpful:    
×
×
  • 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.