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

Joint Pain/Inflammation/Stiffness?

DrubNonie

By DrubNonie
in Coping with Celiac Disease

Recommended Posts

DrubNonie Rookie
DrubNonie
Posted

Hey Everyone,

 

A few months ago I was diagnosed with "celiac" disease by my GI(my antibody showed a 25 at labcorp with a normal range of 1-9, while my biopsy was negative). I had taken a gluten free diet at the start of August and seen an improvement in my symptoms and general well being(Mainly the constipation, bod aches, and severe brain fog). i was diagnosed shortly after going gluten free that I was also Vitamin D deficient and B12 was "low-normal". I started to supplement both respectively and also saw an improvement in my general being. While there were definitive health issues along the way, I had started to feel better until a few weeks ago. I had gone home for thanksgiving break(being that I am a college student). My relatives, as loving as they are, had made a pudding. being that I had assumed for whatever reason that I could eat the damn pudding without asking, I had consumed it. i had later learned it had quite a bit of wafers infused into it(crushed), which I had also assumed, for whatever reason, was safe(never asked, dumb ol me). A day or two after consumption, I had noticed twitching in my right knee. Then it went to my left knee. Then both knees were hurting like crazy. Then it felt like the inside of my knee were in pain. 2 weeks later, they still are. Every morning waking up since then had been quite difficult since my joints are so stiff, and stay stiff throughout the day. Exercise had helped this condition, and helps reduce stiffness and pain for about a day, but if i do not continue to exercise the pain returns reallll fast.

 

The real scary thing is that my hands have also become quite painful. There are red rashes all over my knuckles and I am experiencing pain all in my fingers and wrist and hand. Along with knee pain(and big toe pain here and there as well, but that not as much). Its already been a little over 2 weeks since "reconsuming" a heavy amount of gluten. Is this normal for a gluten reaction to last this long? My pain is symmetrical and sounds an awful lot like Rheumatoid Arthritis. However, I tested negative for all rheumatoid tests back in June. I am seeing a doctor tommorow, but I am wondering from the forum, is it normal for a gluten reaction to last this long? 

 

Thank you all and best Regards, I appreciate any words of advice

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

It can take a bit of time for the antibody reaction to go away.  I get joint pain and stiffness also when glutened and find hot showers, gentle stretching and an anti-inflammatory help a great deal.  I am so sorry you are in so much discomfort and hope it is over soon. Please be careful and ask questions before consuming any foods you haven't prepared yourself. In addition make sure that your family knows they should all be tested for celiac even if they don't have any symptoms or don't think they do.

cyclinglady Grand Master
cyclinglady
Posted

Well, it could be RA or celiac disease as celiac disease affects the joints as well.  But since your symptoms appeared suddenly after a gluten exposure, it is most likely celiac disease.   My glutenings last for months.  Really severe symptoms last a month or more.  Then I gauge my healing based on recovering from lactose intolerance (I hate losing my dairy!),  ceasing to lose weight or the final elimination of daily hives (that lasts about six months).  I am not sure the hives are celiac-related or just autoimmune triggered by glutenings.  I do have Hashimoto’s thyroiditis too.   None of my doctors (GI, PCP or Allergist) can say either as my antibodies for both Hashimoto’s and celiac disease are usually really elevated.  

I hope your recovery is much shorter than mine!   Since it hurts for me to eat anything, I usually make a big pot of stew or soup and eat that at every meal.  I find that eating anything after a glutening can hurt.  It is probably why I lose weight fast.  

DrubNonie Rookie
DrubNonie
Posted
  • Author

Thanks for the replies! yeah, the doctor was also betting that it was likely a gluten reaction. Im currently on week 3 with legs improving a lot but hands getting much worse, so not sure where I stand haha. The doctor said if there isn't an improvement in 3 weeks to seek a rheumatologistt, so heres hoping xmas season ends well...

 

Thanks for all the replies!  

ravenwoodglass Mentor
ravenwoodglass
Posted
11 hours ago, DrubNonie said:

Thanks for the replies! yeah, the doctor was also betting that it was likely a gluten reaction. Im currently on week 3 with legs improving a lot but hands getting much worse, so not sure where I stand haha. The doctor said if there isn't an improvement in 3 weeks to seek a rheumatologistt, so heres hoping xmas season ends well...

 

Thanks for all the replies!  

There are a couple things that I find helpful for hand pain and stiffness. One is doing hot and cold hand soaks. 2 bowls one with water as warm as you can stand and the other with cold water with an ice cube or two. Dunk hands in each going from hot to cold every two minutes or so for a bit and finish with the hot. I also use a parrafin bath. With both I do gentle stretching afterwards.  I found this helpful when I was having issues with hands so stiff I couldn't close them and fingers that were triggering. maybe check with your doctor to see if he/she thinks it might help. 

Ennis-TX Grand Master
Ennis-TX
Posted
15 minutes ago, ravenwoodglass said:

There are a couple things that I find helpful for hand pain and stiffness. One is doing hot and cold hand soaks. 2 bowls one with water as warm as you can stand and the other with cold water with an ice cube or two. Dunk hands in each going from hot to cold every two minutes or so for a bit and finish with the hot. I also use a parrafin bath. With both I do gentle stretching afterwards.  I found this helpful when I was having issues with hands so stiff I couldn't close them and fingers that were triggering. maybe check with your doctor to see if he/she thinks it might help. 

My recent exposure left my joints swollen and stiff, the hot and cold is helping...did not think alternating like would work but it did.  >.< I will admit what happened once I confirm the culprit. >.> my paranoid self is a bit ashamed about it but a bit of a learning experience I guess.

DrubNonie Rookie
DrubNonie
Posted
  • Author

Hey guys...on like week 3 or 4 now I guess.

 

Hand redness has gotten much worse and so has hand pain. No swelling, just constant redness and pain in finger joints. Knees have very little pain now, and only kick in after LONG periods of inactivity (up to a few hours). The finals arent really helping either in this case. It kinda hurts to even hold a coffee or tea now. And type too. is this still typical this many weeks out of a gluten reaction? 

 

obviouslly a slightly stressed post, but was jw... 

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

Celiac.com Sponsor (A8-M):


Ennis-TX Grand Master
Ennis-TX
Posted
13 minutes ago, DrubNonie said:

Hey guys...on like week 3 or 4 now I guess.

 

Hand redness has gotten much worse and so has hand pain. No swelling, just constant redness and pain in finger joints. Knees have very little pain now, and only kick in after LONG periods of inactivity (up to a few hours). The finals arent really helping either in this case. It kinda hurts to even hold a coffee or tea now. And type too. is this still typical this many weeks out of a gluten reaction? 

 

obviouslly a slightly stressed post, but was jw... 

I am on constant stuff for my joints, I take Joint support by jarrow for years now, to the point I just take them in my handful of pills twice a day. I also been using collagen supplement powder in my smoothies twice a day. I think my magnesium also helps. I will admit after a recent knee injury I had to take some extra turmeric daily to get the swelling down. Seems to have healed from grapefruit sized to normal and movable in 3 days.
Some foods, partially if I consume excessive sodium without something to flush me seems to cause a edema issue and joint swelling.
PS when it gets really cold I have to put on gloves around my house or my fingers all go trigger locky style when it gets too cold. (no heater so during the winter my inside sometimes hits 35-40F ish.)

DrubNonie Rookie
DrubNonie
Posted
  • Author

Woah, sounds like a rollercoaster for sure. Am i to assume this to be permanent then? 

Ennis-TX Grand Master
Ennis-TX
Posted
1 hour ago, DrubNonie said:

Woah, sounds like a rollercoaster for sure. Am i to assume this to be permanent then? 

Might be a food trigger, keep a food diary and try rotating up your diet. Remove common inflammatory foods, like dairy, and see if you notice a improvement. With only 3-4 weeks in your probably have a bit of leaky gut and some other food is triggering your extra inflammation. >.< I am a bit special with my joints i walk like 14miles a day average, and am trying to body build. SO I need a bit extra, I gave examples of what I use to keep my joints lubricated and working great to see if they might help you.

ravenwoodglass Mentor
ravenwoodglass
Posted
9 hours ago, DrubNonie said:

 Am i to assume this to be permanent then? 

As Ennis mentioned do check for other intolerances. For myself soy protein or flours cause joint pain in addition to gluten. A food and symptom diary can be very helpful as can be the elimination and challenge.  Sometimes when we eliminate a food the reaction when added back in can be delayed for up to a week. So if you, for example, drop soy for a couple weeks to a month be sure to eat it in some form at least once a day for a week before you decide it is safe. Do make sure when adding back in that you are only eating stuff you know you tolerate so the reaction to the 'new' food is clearest.

I hope you get some relief soon.

Archived

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

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


  • Member Statistics

    • Total Members
      131,553
    • Most Online (within 30 mins)
      7,748
    Jennifer CCC
    Newest Member
    Jennifer CCC
    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

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA 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
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.