Celiac Arthritis

[ThomasR]

Hi guys,

 

I have been diagnosed celiac by biopsy and blood test, and have been eating gluten free for 4 months. My bowel symptoms have improved significantly, but it still took a long time.

Around the same time i started going gluten free, i started to develop joint pain in my feet (big toe joints only), knees and elbows - on both sides of my body (for everything). 

Has anyone experienced this kind of pain and how long did it take until it went away? Also, did you find that the gluten free diet was the cure?

I also get a very foggy feeling in my head and sometimes bad fatigue.

I am quite actve so have been struggling with these most recent symptoms.

My rheumatologist has ensured it is not rheumatoid and is celiac arthritis.

Also, when people accidently consume gluten, how long does it usually take you all to correct itself?

Thanks everyone :-)

[GFinDC]

Welcome to the forum Thomas!

I had joint pain for a while on different occasions.  My hips, shoulders and knees were sore for quite a while early in the gluten-free diet.  For me the problem turned out to be an intolerance to nightshades vegetables.  It took a couple months of not eating nightshades for the pain to go away.

People with celiac disease can have an abnormal zonulin process in their gut.  Zonulin regulates the open time of junctions in the gut lining that control absorption of nutrients.  So if the gut is more permeable then more chemicals etc can get through.  That can cause us to develop food reactions besides just  wheat, rye and barley.

The next time I had joint pain develop was years later after being chronically deficient in vitamin D.  Vitamin D is involved in the chemical process that stores and retrieves calcium from bones.  Vitamin D, boron and calcium work together. 

https://www.sciencedirect.com/science/article/pii/S0946672X20301425

For me at first a glutening has lasted 2 and half months before all symptoms were gone.  Now that I have been on the gluten-free diet for years I think that would be a shorter time.

[trents]

Hi, Thomas. The recovery time after getting "glutened" will vary widely from person to person. For me it seem to take a couple of weeks before I start to feel right again after a good exposure to gluten. You will also find that the longer you have been off gluten the more sensitive you will be to it.

Most of us find that even after going gluten-free we are deficient in certain vitamins and maybe minerals as well because of the malabsorption issues attendant to celiac disease. I would recommend starting with a good adult multivitamin and a B complex. Costco's Nature Made brand are gluten-free.

Edited February 21, 2021 by trents

[ThomasR]

6 hours ago, GFinDC said:

Welcome to the forum Thomas!

I had joint pain for a while on different occasions.  My hips, shoulders and knees were sore for quite a while early in the gluten-free diet.  For me the problem turned out to be an intolerance to nightshades vegetables.  It took a couple months of not eating nightshades for the pain to go away.

People with celiac disease can have an abnormal zonulin process in their gut.  Zonulin regulates the open time of junctions in the gut lining that control absorption of nutrients.  So if the gut is more permeable then more chemicals etc can get through.  That can cause us to develop food reactions besides just  wheat, rye and barley.

The next time I had joint pain develop was years later after being chronically deficient in vitamin D.  Vitamin D is involved in the chemical process that stores and retrieves calcium from bones.  Vitamin D, boron and calcium work together. 

https://www.sciencedirect.com/science/article/pii/S0946672X20301425

For me at first a glutening has lasted 2 and half months before all symptoms were gone.  Now that I have been on the gluten-free diet for years I think that would be a shorter time.

Awesome thanks for your help. I can try to eliminate those too if i keep getting the joint pain. Appreciate it

 

5 hours ago, trents said:

Hi, Thomas. The recovery time after getting "glutened" will vary widely from person to person. For me it seem to take a couple of weeks before I start to feel right again after a good exposure to gluten. You will also find that the longer you have been off gluten the more sensitive you will be to it.

Most of us find that even after going gluten-free we are deficient in certain vitamins and maybe minerals as well because of the malabsorption issues attendant to celiac disease. I would recommend starting with a good adult multivitamin and a B complex. Costco's Nature Made brand are gluten-free.

Thanks for that. Yes i have started multi vitamins this week as well as probiotics too. Wasn't deficient in any of my blood tests but sometimes i do wonder...

 

Thanks

[CJ SIMEON]

New to the forum, first post.  Diagnosed with celiac disease April 2021 based on tTGa over 200 (greater than the lab method range) but no endoscopy due to Covid restrictions. Surprise diagnosis as never had digestive symptoms at all, just some odd blood work, crushing fatigue and frankly welcome weight loss. Immediately went gluten-free and felt great within 3 weeks.  I ate a slice of bread in August to see what would happen if I got glutened. Huge mistake!  The next day I woke up with horrible arthritis in most joints that took 4 months to resolve. I didn't even know that could happen, expecting to maybe be a bit tired or have some digestive issues. 

My question is, it this normal for the reaction to be so strong and last so long? So different from pre-gluten-free symptoms? In your experience, if I ate at a restaurant (I haven't yet) and got a bit of gluten, should I expect the same thing as a slice of bread?  My husband feels I'm overreacting regarding eating out and considers it less than the risk people with nut / egg / seafood allergies take but still dine out. 

Thanks to any with insights or experiences to share.

[trents]

Joint pain is a common symptom of celiac disease but for an episode of joint pain to last four months from one glutening experience is, I would think, not common. So, I'm wondering if you are getting small amounts of gluten on a more regular basis from say, cross contamination or a change in the formulation of one of the mainline food items you use than you realize. Food companies can and do change formulations so it pays to read labels whenever you buy processed food items not certified as gluten free instead of assuming once gluten-free always gluten-free. And that brings up another issue and that is the difference between "gluten free" and "certified gluten free." You may be one of those for whom the 20ppm standard is not good enough. Certified Gluten Free food products are held to stricter standards, either 10ppm or 5ppm of gluten, depending on the certifying agency. If you are still serving gluten-based foods to your husband there is also a significantly increased chance that you are getting cross contamination from preparing his food.

[Scott Adams]

@Wheatwacked, I agree with @trents, 4 months seems like a really long time for one gluten episode. I've heard of a few weeks, but not 4 months.

[CJ SIMEON]

Thank you both for your answers, very helpful. I do know I ate that bread and woke up 25 years older the next day. It reversed slowly with my hands being last. 

I'm reviewing everything I eat based on your suggestions as anything I ate then I still eat now. I live in a rural area of Romania and never eat out so that isn't a complication.  Stores here have few gluten-free products so I order gluten-free flour, oats, pizza dough or pasta mix, etc., online from specialty stores and make from scratch at home.  Everything else I read all the labels carefully but certified gluten-free would be rare in a store here. We eat mostly potatoes and rice for starches now. 

The only thing I would have daily are vitamin supplements or an antihistamine but I carefully read those labels and have the pharmacist check before buying. Not much else I consume daily other than black tea. Are there common ingredients that cause this type of glutening I should focus on checking or eliminating?

My husband eats what I do except for bread, which he toasts outside the kitchen and never puts on the counters. He prefers the gluten-free bread I bake using Nutrifree Mix per Pane but the price is 10x higher than regular bread. 

[trents]

2 hours ago, CJ SIMEON said:

Thank you both for your answers, very helpful. I do know I ate that bread and woke up 25 years older the next day. It reversed slowly with my hands being last. 

I'm reviewing everything I eat based on your suggestions as anything I ate then I still eat now. I live in a rural area of Romania and never eat out so that isn't a complication.  Stores here have few gluten-free products so I order gluten-free flour, oats, pizza dough or pasta mix, etc., online from specialty stores and make from scratch at home.  Everything else I read all the labels carefully but certified gluten-free would be rare in a store here. We eat mostly potatoes and rice for starches now. 

The only thing I would have daily are vitamin supplements or an antihistamine but I carefully read those labels and have the pharmacist check before buying. Not much else I consume daily other than black tea. Are there common ingredients that cause this type of glutening I should focus on checking or eliminating?

My husband eats what I do except for bread, which he toasts outside the kitchen and never puts on the counters. He prefers the gluten-free bread I bake using Nutrifree Mix per Pane but the price is 10x higher than regular bread. 

Is it possible you are cross-reacting to some food protein that is similar to gluten. It is common for celiacs to develop other non-gluten food intolerances. Dairy, oats, eggs, corn and soy are common among them.

[CJ SIMEON]

I have read of that but didn't consider it. Thank you for another path to investigate.

[Russ H]

My joint symptoms resolved over about 6 months. Not completely resolved yet, but improving every day. Watch out for oats, about 10% of people with coeliac react to oats, which contain a similar protein to wheat gliadin.

[Scott Adams]

I have had joint issues in the past, mostly in my fingers, and daily flax seed and fish oil capsules make it go away.

[jackelynamills]

On 2/26/2022 at 3:24 PM, Scott Adams said:

I have had joint issues in the past, mostly in my fingers, and daily flax seed and fish oil capsules make it go away.

Thanks for the information! I have been so miserable I am grabbing onto any information available!

[CJ SIMEON]

I will definitely try those if it happens to me again!