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Joint Pain Due To Celiac?


TardyTurtle

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TardyTurtle Newbie

Hi Everyone,

I have been having problems with my joints for the past year. It started with my knees scraping (feeling like bone on bone) and cracking as I walked up stairs and now all my joints feel affected - especially knees and wrists. I have been mostly gluten free for the past 6 weeks and feel these symptoms have escalated in the past couple weeks. My knees now hurt and feel inflamed. My wrists also feel weak and crack with some pain.

I have read celiac can cause an autoimmune reaction in my joints. Does anyone else have this experience and/or suggestions? Thank you!

BTW, I am 31 yrs old, not overweaight, and with no previous injury to my joints - so likely shouldn't have osteoarthritis -here is my dx detail:

Last week, lab tests confirmed active dietary gluten sensitivity, autoimmune reaction to transglutaminase, elevated anti-casein (cow's milk) IgA antibody, and two copies of a gene that predisposes to gluten sensitivity (HLA-DQ 3,1 (Subtype 7,6)) However, do not possess the main HLA-DQB1 genes predisposing to celiac sprue.


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YoloGx Rookie
Hi Everyone,

I have been having problems with my joints for the past year. It started with my knees scraping (feeling like bone on bone) and cracking as I walked up stairs and now all my joints feel affected - especially knees and wrists. I have been mostly gluten free for the past 6 weeks and feel these symptoms have escalated in the past couple weeks. My knees now hurt and feel inflamed. My wrists also feel weak and crack with some pain.

I have read celiac can cause an autoimmune reaction in my joints. Does anyone else have this experience and/or suggestions? Thank you!

BTW, I am 31 yrs old, not overweaight, and with no previous injury to my joints - so likely shouldn't have osteoarthritis -here is my dx detail:

Last week, lab tests confirmed active dietary gluten sensitivity, autoimmune reaction to transglutaminase, elevated anti-casein (cow's milk) IgA antibody, and two copies of a gene that predisposes to gluten sensitivity (HLA-DQ 3,1 (Subtype 7,6)) However, do not possess the main HLA-DQB1 genes predisposing to celiac sprue.

Yes the ravages of gluten intolerance definitely can cause such joint problems. It certainly has for me. I am very sensitive to any gluten at all--even as it turns out in soaps and lotions etc. that have (wheat germ) vitamin E in them! This of course includes cosmetics. I also can't have any grain made anything including alcohol and white (or wine or malted) vinegar.

I suggest in the meantime to make your life easier you invest in buying some bromelain/papain caps and pancreatin enzymes. It will help your intestines deal with food better and you will have less inflammation. If you have the money, invest also in either nattokinase or serrapeptidase to take down the scar tissue and inflammation in your intestines. Best taken on an empty stomach maybe with some extra bromelain/papain or other enzymes. Taken away from food they are called "systemic enzymes" and help take down inflammation.

I have also had success using liver cleansing herbs to take down the inflammation--such as alternating one week on and one week off with either milk thistle (silymarin caps) or dandelion root. And yes -- no tinctures!

If you don't have D you can also alternate Oregon Grape Root and Yellow Dock. They help the liver and intestines get rid of toxins and thus again inflammation. Many people with arthritic like symptoms are helped by these detox herbs.

Marshmallow root and/or slippery elm will also help heal and soothe the intestines which will also take down inflammation as a byproduct.

These and other remedies really do help. I have other more extensive posts here on natural remedies.

Of course eat lots of greens and at first a more caveman (or woman!) diet--avoiding grains altogether at first is best.

And no sugar! Use stevia as a sweetner instead.

And exercise, mud packs on hands and feet plus saunas really do help!

Plus of course extra vitamin D (cod liver oil is best if you can tolerate it since it has vit. A plus Omega 3's), minerals including calcium & magnesium and sea minerals, and some good B vitamins, pro-biotics, vitamin E, etc. -- all gluten free.

Hope this works for you! Eventually you won't have to do as much but for now all the above can speed up the process of healing.

Bea

Lisa16 Collaborator

Hi Tardyturtle!

I have the very same genes you do and the same joint pain. Mine is slowly getting better after 5 months gluten-free. I think/ hope it will continue to improve. It hit my knees and hips first, and then it got my arms, hands and feet.

BTW-- there is a thread about that gene type on the post-diagnosis forum that you might want to look at. People with those genes list their symptoms.

Yolo gives excellent advice. I am going to take some of it myself.

Good luck!

Lisa

Candy Contributor

Same here -I have joint pain /trouble too-stiffness. I'll try cutting out foods we shouldn't eat ,I'll return to papain tablets (I used them when I was a teen,before I knew I had celiac).I haven't heard of the Pancreatin pills, I'll look them up(there are so many enzymes and stuff for consideration) I haven't given it much thought. The advice and response to the joint question was very good-I'm glad someone brought up the issue of joint problems in Celiacs,as I've that prob. myself amongst other things,like white spotted teeth and runny blood(I was advised to ingest more vitamin K to promote clotting.I did, it's also found in Parsley fresh or 2tsp.dried,now my blood isn't so runny if I get a cut).Viatmin K is fat soluble so I take it with some oil.

ravenwoodglass Mentor

Yes, by the time I was diagnosed I had some pretty severe joint damage to go with the pain. By six months gluten-free my canes had moved into a corner to stay. My damaged joints still look a bit knobby but I have been in remission from my arthritis with no meds now for over 5 years. Something that the doctors thought would not happen.

Just as an info tidbit, one gene that in the US is a RA gene, DQ9, is considered a celiac in other parts of the world. That is the one I have double copies of.

bluejeangirl Contributor

I noticed also it helps to drink lots of water, it keeps the cartilage healthier and plumper. Don't drink to much coffee or alcohol because they'll dehydrate you. Sugar and a hgh carb diet causes alot of inflammation. There are some good books on inflammation. I've read alot of them but its been a few years since and I can't remember a single title. :(

Gail

tarnalberry Community Regular

you talk about a couple of things, including the knees, and I thought I would check and make sure that you had been thoroughly evaluated by a competent orthopaedist. some things may relate back to celiac, but some don't. there are problems that can lead to joint deterioration that have nothing to do with autoimmune conditions (I have one, chondromalacia patella, that is caused by a muscular imbalance, and - likely - the way my bones are angled, genetically; I also have a tendency to chronic tendinitis in the wrist as I work at a computer all day). it's worth determining if any of the pain/inflammation/damage is caused by this, so that you can work with an appropriate health professional (be it a physical therapist, chiropractor (yes, they work on knees too), or whatnot) to correct any postural misalignments or misuses than could be contributing to the problem.


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RiceGuy Collaborator

Besides magnesium, what has helped me with joints is glucosamine. The product I take also happens to have MSM, and I don't know if that has anything to do with the effectiveness. It has done wonders for my jaw, which is what I started taking it for in the first place.

Wonka Apprentice
Besides magnesium, what has helped me with joints is glucosamine. The product I take also happens to have MSM, and I don't know if that has anything to do with the effectiveness. It has done wonders for my jaw, which is what I started taking it for in the first place.

I can't take glucosamine, it gives me awful stomach aches.

TardyTurtle Newbie

Thank you everyone for your informative, helpful responses. I have a lot to look into!

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    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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