Severe joint swelling from Celiac

[Jean Shifrin]

Hello, I am 67 and newly diagnosed, although I've probably had Celiac for many years. I did have digestive issues years ago, but went gluten-free for many years and my gut improved greatly and I slowly introduced gluten back into my diet. A few years ago I started have severe knee swelling in my arthritic knee. I have tried many treatments,  including a total knee replacement - but the severe swelling continued and I realized it was directly related to eating. Almost anything I ate caused severe swelling and pain. I tested positive for Celiac and am wondering if anyone else here has joint swelling symptoms from Celiac. Fortunately I am not currently dealing with digestive issues, but the knee issue is life-altering. I am a very active person and have had to be mostly sedentary for the last 2 years. I have been prescribed a low-dose of Prednisone, which helps the swelling a lot, but it is not ideal to stay on Prednisone long-term. I'm terrified to eat out or go to social events that always revolve around food. Has anyone else here had joint swelling issues with Celiac. If so, do you have any advice? Thank you.

[Russ H]

Hello, and welcome to the forum. More knowledgable people might be able to chime in. Firstly, coeliac disease causes all sorts of bizarre manifestations in adults from chilblains to schizophrenia. There is a direct association between coeliac disease and arthritis in younger people, and coeliac disease has a common genetic predisposition with rheumatoid arthritis. It is certainly possible that your joint problems are related to coeliac disease, particularly if they manifest after consuming gluten. I rarely eat out anymore because I don't trust the kitchens, so I understand the effect of social events. It is hard at first but stick with it and you will get used to it and feel much better for it - it can take several years to fully recover in adults.

8 hours ago, Jean Shifrin said:

 

 

[Jean Shifrin]

Thanks Russ for replying. I’m not looking forward to the long, difficult road ahead. But I am looking forward to feeling better.

[knitty kitty]

Welcome to the forum, @Jean Shifrin

Yes, I get achy swelling joints if exposed to gluten.  The antigluten antibodies can attack the connective tissue in joints.  

Here's an interesting article...

Isolated polyarthritis revealing celiac disease: A case report

https://pubmed.ncbi.nlm.nih.gov/37434897/

And another...

Celiac Disease Masquerading as Arthralgia

https://pmc.ncbi.nlm.nih.gov/articles/PMC9237855/

Edited October 28, 2024 by knitty kitty
Typo correction

[Jean Shifrin]

Thanks for this articles!

[Scott Adams]

We have an Arthritis and Celiac Disease category of articles that you may find interesting:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/arthritis-and-celiac-disease/ 

[Jean Shifrin]

Thanks Scott!

[Suzyq112]

Hello Jean, I'm newer at thus as well. A type 1 diabetic can complicate my healing as well as I'm a very fragile diabetic since I was 5, and now 43. I have bad joint pains and swelling. It's bad especially while sleeping. I'm still trying to find relief as steroids raise my blood sugars. I'm hanging in there with you. I've stopped eating out and cook at home. I hope you are feeling better soon. If anyone else knows of nonsteroidal meds please let me know. Hard too as I have kidney disease and NSAIDS are looked down on. 

[Scott Adams]

You might want to look into CBD based products (without THC). These are legal in most states and can help with pain and inflammation.

[Jean Shifrin]

Thanks Scott. I have been using CBD creams, etc. and I do think they help ease the swelling a bit. And thanks so much for creating this forum and for helping those of us who are dealing with a very scary and challenging diagnosis. My path was a bit similar to yours, without so many invasive tests though. I suspect many people suffer for years before getting a diagnosis b/c I don't think the medical community is very well informed. If only they made the diet/body connection... So thanks again for all your help and the effort you put into helping so many of us.

[Suzyq112]

Thank you Scott! I'll look into that.

[knitty kitty]

Hello, again.  

I found this supplement at Amazon that works astoundingly well for pain.  The three B vitamins in it, Thiamine B1, Pyridoxine B6, and Cobalamine B12, when taken together relieve pain as well as Nsaids.  Not only do I get joint pain (especially in my fingers and can't knit 😿), I get back pain from crushed vertebrae (osteopenia), and this combination works very well.  You can also take these three vitamins separately.  I find it convenient to have them all in one pill.

Takeda ALINAMIN EX Plus Vitamin B1 B6 B12 Health Supplementary from Japan 

I have Type Two Diabetes.  Thiamine is low in people with both types of diabetes.  We lose lots of Thiamine through urine because our kidneys don't reuptake thiamine properly.  Taking Thiamine helps with my blood glucose levels.  I have been able to stop taking pharmaceuticals for diabetes (metformin, glypizides, glyburides, etc.)  Thiamine is a natural substance and cannot be patented, so pharmaceuticals, that can be patented and therefore profitable, are used instead.  

References:

Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review

https://pubmed.ncbi.nlm.nih.gov/35156556/

Thiamine and diabetes: back to the future?

https://pmc.ncbi.nlm.nih.gov/articles/PMC8505293/

Association between diabetes and thiamine status - A systematic review and meta-analysis

https://pubmed.ncbi.nlm.nih.gov/37094704/

Thiamine Level in Type I and Type II Diabetes Mellitus Patients: A Comparative Study Focusing on Hematological and Biochemical Evaluations

https://pmc.ncbi.nlm.nih.gov/articles/PMC7282352/

Hope this helps!!!

[Suzyq112]

Thx kitty! 

[Yes]

On 10/27/2024 at 7:21 AM, Jean Shifrin said:

Hello, I am 67 and newly diagnosed, although I've probably had Celiac for many years. I did have digestive issues years ago, but went gluten-free for many years and my gut improved greatly and I slowly introduced gluten back into my diet. A few years ago I started have severe knee swelling in my arthritic knee. I have tried many treatments,  including a total knee replacement - but the severe swelling continued and I realized it was directly related to eating. Almost anything I ate caused severe swelling and pain. I tested positive for Celiac and am wondering if anyone else here has joint swelling symptoms from Celiac. Fortunately I am not currently dealing with digestive issues, but the knee issue is life-altering. I am a very active person and have had to be mostly sedentary for the last 2 years. I have been prescribed a low-dose of Prednisone, which helps the swelling a lot, but it is not ideal to stay on Prednisone long-term. I'm terrified to eat out or go to social events that always revolve around food. Has anyone else here had joint swelling issues with Celiac. If so, do you have any advice? Thank you.

I’m 22 and diagnosed a year ago. I still have bad swelling in any joints I overuse, but the biggest help has been supplements. If you were undiagnosed, you’re probably lacking a lot of nutrients from malabsorption. If you get a blood test a doctor can tell you what to take. Helped all my symptoms

[Jean Shifrin]

Thanks! Hi Suzy, I’m so grateful to have this forum. Thanks for responding. And I’m so sorry for all you have been through. This is such a long and challenging journey. I have been dealing with many surgeries and other issues for a long time now and my heart goes out to you because I understand what it’s like. I’m trying to accept the fact that my retirement years are going to be significantly different than I had envisioned. My plans for world travel, and active vacations is probably not going to happen anymore. I realize it may take several years for this to reach a point of being able to live without feeling like a hermit. And like you, I cannot take NSAID. I am on a very low dose of prednisone right now because that is the only way I can get the swelling under control until the gluten-free diet begins to kick in. I’m also still recovering from my knee replacement surgery, so there’s that. Here’s hoping your journey goes well. 

Thanks! I specifically asked my doctor about that and she said she would let me know if I needed any vitamins, minerals, or supplements - but then she didn’t say anything else. I will have to ask again at my next visit with her. In the meantime, I am taking vitamin D because I assume I need that. Are there any particular supplements that worked best for you? 

[Beverage]

On 10/29/2024 at 12:46 PM, Suzyq112 said:

 Hard too as I have kidney disease and NSAIDS are looked down on. 

I also did not have the so-called typical Celiac symptoms, my main complaint was always getting sick, asthma, loss of sense of smell, and kidneys were failing. My GFR was in 40's - 50's and docs saying "Kidneys don't get better, we can only slow the decline" also "We don't do anything for kidneys until you are ready for dialysis." I was blown away, so decided to go to a naturopath who diagnosed me with Celiacs rather quickly.

After the Celiac diagnosis and lots of improvement overall on gluten-free diet, kidneys came back a little, but not great like I'd hoped.  I had improvement in asthma and other issues with benfotiamine (b1), metylcobalamin (b12), and flush niacin (b3), but kidney improvement remained elusive.

Ok so I'll admit I became an internet doctor and searched and read everything to get kidney function up. I happened across someone on Twitter who touts natural immunity and supplements for healing. So I tried what she recommended for CKD:  Nettle seed extract, silymarin (milk thistle), and Cordyceps mushrooms. I started at the end of April of this year, and got my kidneys checked in mid-September. In 4 1/2 months, GFR went up to 70!  All other numbers looked fantastic.

I can't say it will help you, but worth investigating. I believe dosage amounts are important, so let me know if you want more information.  

[Jean Shifrin]

Thank you so much for this info. I won't know my levels of anything until my next appointment, but I am saving this info and will contact you if I'd like to get more detail. I'm so happy you found some real help!

[Suzyq112]

Thank you! I will look into these!