Joint swelling when ill even on gluten-free diet

[Moodiefoodie]

Hello!

I am trying to figure out if my recurring flares of joint swelling are due to accidental gluten ingestion or something else.

Joint swelling was my main celiac symptom for several years before my diagnosis. The joint issues resolved after 6 months on a gluten-free diet (been gluten-free for a few years now) but every time I get sick with a cold or anything or even when I get a vaccine, my joints swell and stiffen in the same pattern they did before I knew I had celiac disease. My joints are fine otherwise now on a gluten-free diet. It’s only when I get sick. Any ideas of why this might be happening?

Just FYI, my joints started swelling when I was 14 and I had several tests done a few times over the 20 years that followed before finally getting a celiac test that showed IgG >100. All of those series of tests came back negative for rheumatoid arthritis, lupus, Lyme disease, etc.

Would love to hear any thoughts. TIA!
 

[Scott Adams]

It sounds like you've been through a lot with your joint swelling and health journey. It's possible that your flares of joint swelling could be related to your body's immune response during illness or vaccination, rather than accidental gluten ingestion. 

Have you noticed a connection to your joints swelling with other foods you eat, for example nightshades like tomatoes, eggplant, peppers, etc? Many people with joint issues report that there are other food triggers that affect their joints, so perhaps you may want to keep a food diary to see if there is a connection?

 

[Moodiefoodie]

Thanks for your response. It seems to be only with gluten, illness, or vaccination. 

[Celiac16]

I wasn’t feeling great even after eating strict gluten and diary free for years. I eliminated grains which helped and then eventually adopted a low carb, high fat, medium protein diet that really helped. I think I was too focused on the celiac diagnosis, and kept going back to my go for colonoscopies and endoscopies that didn’t lead to anything (the drs didn’t have any helpful suggestions either). The experiments I did on my own helped…( I also avoid nightshades too).

In noticed taking out sugar and carbs really helped. My symptoms were more severe fatigue and dizziness and nausea after eating but it’s worth a shot!

[knitty kitty]

@Moodiefoodie,

Sorry you are having such problems.  

Gluten exposure, illness and vaccinations are situations in which there is a higher demand for Thiamine Vitamin B1.  

We need more Thiamine when we have an immune response, whether it is caused by a cold or an inoculation to promote an immune response as with vaccines, or upon exposure to gluten and our autoimmune response to gluten.  

Thiamine stores can be depleted within three days to three weeks.  Subclinical Thiamine deficiency can exist for years.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms may mysteriously wax and wane.  With illness, vaccinations, and gluten exposure, the demand for Thiamine increases, and symptoms flair.

Thiamine has antibacterial properties.  Thiamine has analgesic effects, especially when taken with Pyridoxine B 6 and Cobalamine B12.  Thiamine has been shown to reduce inflammation in joints.

The Gluten Free diet can be low in Thiamine.  Gluten free processed foods are not enriched with vitamins like gluten containing products.  Eating a diet high in these carbohydrates can also increase the demand for Thiamine.  This is High Calorie Malnutrition.

Supplementing with Thiamine, the rest of the B vitamins, and magnesium is beneficial in correcting nutritional deficiencies as occurs in Celiac Disease.  

References:

Thiamine and benfotiamine: Focus on their therapeutic potential

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10682628/

Long-Term Treatment by Vitamin B1and Reduction of Serum Proinflammatory Cytokines, Hyperalgesia, and Paw Edema in Adjuvant-Induced Arthritis

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5102562/

Thiamine deficiency disorders: a clinical perspective

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451766/

Hiding in Plain Sight: Modern Thiamine Deficiency

Chandler Marrs and Derrick Lonsdale

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

The Effect of a High-Dose Vitamin B Multivitamin Supplement on the Relationship between Brain Metabolism and Blood Biomarkers of Oxidative Stress: A Randomized Control Trial

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6316433/

[Spacepanther]

I have had joint pain as one of my dominant symptoms. I've wondered, mostly to myself until now, whether it could be related to another autoimmune concern. Have you had any ideas of what else it might related to? 

[knitty kitty]

Vitamin D deficiency.  Not enough Omega Threes.

Another autoimmune disease like arthritis, maybe.    

[Spacepanther]

thank you knitty kitty

I don't have a vitamin deficiency and I supplement omegas. 

Are there other more mild symptoms that co-occur with your joint pain as well @Moodiefoodie? I am suspicious my own joint pain could be related to another autoimmune issue. I am wondering if it is Crohn's or something similar because I've continued to experience some issues despite having normal celiac antibody levels. What have you considered?

[knitty kitty]

@Spacepanther,

I found these articles about the connection between Celiac and joint pain.

Musculoskeletal Complications of Celiac Disease: A Case-Based Review

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10201087/

And

 

Intestinal microbiome composition and its relation to joint pain and inflammation

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6814863/

And

The gut microbiome-joint connection: implications in osteoarthritis

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6903327/

Sounds like it's time to change the diet to change the microbiome.

[Moodiefoodie]

Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well.  I also experience stiffness and pain in my neck and shoulders when it flares. I vomited fairly often growing up, but there wasn’t a real pattern to it and I didn’t know it wasn’t normal (thought people caught stomach viruses often).  I don’t usually have stomach symptoms immediately after eating gluten that I notice.  The only other joint condition I know of is fibromyalgia. Good luck! Hope you can get it figured out. I only assumed my joint symptoms were due to the celiac’s because it is under control for the most part on a gluten-free diet.  The rheumatologist also mentioned that some inflammatory/autoimmune diseases can be slow-moving and not detectable until they progress.

[DebJ14]

I too have had horrible joint pain and swelling as well as chronic tendinitis.  A good diagnostician reviewed all my medical records and realized that it all started back in 1987 after a course of Cipro for a sinus infection.  He also linked subsequent severe flare ups in my ankle, shoulder, and elbow to repeat prescriptions.  I was floxxed! 

My poor husband ended up in the ER getting morphine after taking 2 pills of Levaquin for a UTI.  He was unable to walk for months.  Thankfully, the orthopedic surgeon he saw a few days after the ER visit picked right up on it while reviewing his history. 

The fluoroquinones are supposed to be last resort, but sadly many doctors hand them out like candy without trying other, less toxic, antibiotics.

[knitty kitty]

@DebJ14,

Dr. Derek Lonsdale and Dr. Chandler Marrs have done research on fluoroquinones and how they induce Thiamine deficiency.  High dose Thiamine is used to treat being floxxed.  

Thiamine also helps UTIs.

References:

A Fluoroquinolone Reaction After Just One Pill

https://www.hormonesmatter.com/fluoroquinolone-reaction-one-pill-cipro/

Who Was I to Question a Doctor? Lessons Learned after Being Floxed

https://www.hormonesmatter.com/question-doctor-lessons-learned-floxed-cipro/

[DebJ14]

1 hour ago, knitty kitty said:

@DebJ14,

Dr. Derek Lonsdale and Dr. Chandler Marrs have done research on fluoroquinones and how they induce Thiamine deficiency.  High dose Thiamine is used to treat being floxxed.  

Thiamine also helps UTIs.

References:

A Fluoroquinolone Reaction After Just One Pill

https://www.hormonesmatter.com/fluoroquinolone-reaction-one-pill-cipro/

Who Was I to Question a Doctor? Lessons Learned after Being Floxed

https://www.hormonesmatter.com/question-doctor-lessons-learned-floxed-cipro/

Nobody told me about the high dose Thiamine, but when my husband was injured he was put on it, so I started taking it too.  I definitely saw improvement.  At this point my biggest concern is my right foot/ankle.  Tendon tears have taken a toll.  My Achilles did not rupture, but had multiple small tears.  I underwent laser and ultrasound therapy to help heal it, but it remains perpetually swollen.  I had a CT scan done a couple years after the worst of it and I was diagnosed with chronic impingement syndrome.

[knitty kitty]

Omega Threes, Vitamins A, D, E, Biotin B7, and Pantothenic Acid B5 are helpful in healing tendons.  

I'm so glad to hear of your improvement with high dose Thiamine.  

Are you taking a B Complex and magnesium as well?

[DebJ14]

17 minutes ago, knitty kitty said:

Omega Threes, Vitamins A, D, E, Biotin B7, and Pantothenic Acid B5 are helpful in healing tendons.  

I'm so glad to hear of your improvement with high dose Thiamine.  

Are you taking a B Complex and magnesium as well?

YES!  I had the Spectracell test for micronutrients and take targeted supplements in specific doses as recommended by our Board Certified Nutritionist.

[knitty kitty]

I'd like to hear more about the supplements recommended!