Joint Pain

[jaimi alderson]

Hi everyone! My hips have been hurting to the point of needing Ibuprofen for 3 days now. My kids & I have all had earaches so we may all have a very mild cold. I have been gluten-free for 2.5 weeks & was diagnosed with celiac last week so this is all very new. Because I am almost totally back to normal after being gluten-free for a few weeks should I still have celiac symptoms like joint pain? Even though digestion is back to normal should I still expect other celiac symptoms? Or is this probably just a cold settled in my hips! They just have not hurt like this since I was pregnant and I know I am not! Thank you so very much for any insight anyone has.

[nettiebeads]

Healing is very individual for everyone, just like celiac affects us all about the same, but still different. You did not say how long you had symptoms before dx; how severe and such. The tummy issues are usually the first to be resolved after going gluten-free. The others take longer. Some people don't notice much change until after 6 months or more after starting the gluten-free diet. Patience, dear. I'd give it another two weeks or more. Or it could be the cold - my lower back hurts like I'd clear cut brush for a few days whenever I get sick.

Annette

[TCA]

It took about 4 mos. for my joint pain to get better and they hurt sooo bad with accidental glutening.

[jerseyangel]

I get the hip pain, too. It was so much worse before I was diagnosed. It would hurt to turn over in bed. Slowly, over several months gluten-free, it has gotten a lot better. Mostly it's stiffness now--especially in the morning.

[Nancym]

If it doesn't go away, get to a good rheumatologist. I found out I have another autoimmune disease which affects my joints. They've got some pretty good treatments now, so suffering in silence isn't necessary.

[lonewolf]

I had horrible joint pain too (everywhere except my jaw) and it went away when I eliminated eggs, dairy and soy, as well as gluten. It got a little better right away, but it took about 8 months before I could make it through the day without large doses of ibuprofen (careful with that BTW, I now have kidney disease). Now, 10 years later, I'm pain free, and have been for about 8+ years.

[key]

I had horrible joint pain too and mine went away once gluten free. It was pretty quick, but when I get gluten the pain returns. My doctor explained it as an inflammatory response. Not sure if he knows everything, but it does make sense.

Monica

[jaimi alderson]

Please help me! My hips & legs hurt sooooo bad. Let me start at the beginning for anyone who has time to read this. No celiac symptoms until 2-24-06 when my whole household got an intestinal virus & mine never went away. Celiac panel abnormal 3-15-06 which is when I went gluten-free. Positive biopsy back last week. So totally gluten-free for 2.5 weeks now. Overnight intestinal symptoms improved& then completely healed (by my standards) after 2 weeks gluten-free. What I do not understand is that I had no joint pain or leg pain until probably 5 days ago! And no symptoms of any kind before my "trigger" of the virus a month ago. I have a horrendously active life with my 2 kids & I have never been a relaxer (or unhealthy!)-I am not one to ever sit down. So now I am IRRITABLE because I do not feel like getting up as my hips & legs ACHE!!!!!!!! Today was a very active day for me with the kids gymnastics & stuff plus I am very tired. So I know this pain is at its worse ( I hope) But is this related to the celiac disease? I don't get it if I never had the disease (I mean symptoms) before & now I am gluten-free how did I get worse!!!!!!!! I really feel like there is not a doctor I can ask this question of-is that just my city or does anyone else have that problem in their area? Anyway, I need to get this pain gone as my kids will not put up with it (they are too young to understand) plus it hurts. Thank you soooooooooo much for anyone who can help me.

[TCA]

I'm an on the go person too and have had the pain all my life. When I was little I would lay in bed and cry and my Dad felt so helpless. He had me tested for everything. Tylenol did help, but it never went away. Active days were worse, but I learned to live with it. My family is full of chronic pain disorders, so I thought it was normal for me. The diet was a complete accident for me. I only went on it to help my daughter's symptoms of celiac disease. It was a long shot, but I was trying anything to help her since she was nursing. I could not believe the difference. If I get accidentally glutened I hurt sooooo bad now. It hurts worse now that I've been a while without hurting, if that makes sense. Are you sure you didn't get glutened accidentally. That sets me off for days. I will be thinking of you. Have you tried standard OTC pain meds? Do they help?

Please help me! My hips & legs hurt sooooo bad. Let me start at the beginning for anyone who has time to read this. No celiac symptoms until 2-24-06 when my whole household got an intestinal virus & mine never went away. Celiac panel abnormal 3-15-06 which is when I went gluten-free. Positive biopsy back last week. So totally gluten-free for 2.5 weeks now. Overnight intestinal symptoms improved& then completely healed (by my standards) after 2 weeks gluten-free. What I do not understand is that I had no joint pain or leg pain until probably 5 days ago! And no symptoms of any kind before my "trigger" of the virus a month ago. I have a horrendously active life with my 2 kids & I have never been a relaxer (or unhealthy!)-I am not one to ever sit down. So now I am IRRITABLE because I do not feel like getting up as my hips & legs ACHE!!!!!!!! Today was a very active day for me with the kids gymnastics & stuff plus I am very tired. So I know this pain is at its worse ( I hope) But is this related to the celiac disease? I don't get it if I never had the disease (I mean symptoms) before & now I am gluten-free how did I get worse!!!!!!!! I really feel like there is not a doctor I can ask this question of-is that just my city or does anyone else have that problem in their area? Anyway, I need to get this pain gone as my kids will not put up with it (they are too young to understand) plus it hurts. Thank you soooooooooo much for anyone who can help me.

[janet75]

Was diagnosed with celiac disease and I've been gluten free since 1/2005 after suffering for 20 years. Still have a lot of unexplained symptoms, the big one being joint and muscle pain. As I sit here typing this, the calves of my legs are burning and my toes are tingling. I've fired my old doc, my dentist knows more about celiac disease than she does. My life seems like it is at a standstill because of the pain, so I can identify with all of you who still have the pain. Out of desperation went to an allergist and found I'm allergic to everything under the sun that I can breathe, as well as corn, soy, and milk. I have my first appointment with a new doc tomorrow. I've already interviewed him on the phone and am hopeful that he can help. He is associated with a large teacing hospital so hope he brings new ideas to the table. If he does, I'll share them.

We have to keep the faith and find pleasure in the little things so this thing doesn't beat us.

Jan in Cincinnati

New to forum today looking for answers.

[mmaccartney]

have arthritis and fibromyligia associated with celiac. My rheumotologists mother had Celiac disease so she was quick to identify the relationship.

Both the joint and bone/muscle pain subsided GREATLY after going gluten-free. After about 4 months gluten-free I was able to stop taking my Relafen (NSAID). Of course Prednisone always worked to relieve the symptoms, but who wants to stay on general steriods for a long period of time? It was tough coming of the Relafen, the joint and muscle/bone pain did come back a bit, and are still present. There are times when it flares up, certainly when I get glutened it gets really bad particlarly in my hips. Generally there is always pain from this, I don't think it will ever go away. I feel that there was a level of damage done during my gluten days that isn't reversible and will remain forever. Something I will just have to deal with, though it seems odd to complain about arthritis, and even having to ask people to open pill bottles for me when I'm only 33 years old!!!!!!

I've been gluten-free for 9 months now, and still have elevated IgA levels so I figure I've still got some time for my system to get good and cleared out and for the remaining symptoms to resolve. I suspect I'll have arthritis and fibromylagia issues for hte rest of my life though, BUT the pain and discomfort is actually bearable now.

[Nancym]

Please help me! My hips & legs hurt sooooo bad. Let me start at the beginning for anyone who has time to read this. No celiac symptoms until 2-24-06 when my whole household got an intestinal virus & mine never went away. Celiac panel abnormal 3-15-06 which is when I went gluten-free. Positive biopsy back last week. So totally gluten-free for 2.5 weeks now. Overnight intestinal symptoms improved& then completely healed (by my standards) after 2 weeks gluten-free. What I do not understand is that I had no joint pain or leg pain until probably 5 days ago! And no symptoms of any kind before my "trigger" of the virus a month ago. I have a horrendously active life with my 2 kids & I have never been a relaxer (or unhealthy!)-I am not one to ever sit down. So now I am IRRITABLE because I do not feel like getting up as my hips & legs ACHE!!!!!!!! Today was a very active day for me with the kids gymnastics & stuff plus I am very tired. So I know this pain is at its worse ( I hope) But is this related to the celiac disease? I don't get it if I never had the disease (I mean symptoms) before & now I am gluten-free how did I get worse!!!!!!!! I really feel like there is not a doctor I can ask this question of-is that just my city or does anyone else have that problem in their area? Anyway, I need to get this pain gone as my kids will not put up with it (they are too young to understand) plus it hurts. Thank you soooooooooo much for anyone who can help me.

You should go see a rhuemy. You might have a type of arthritis trigger by a bacterial infection, like food poisoning. They're called a "reactive arthritis".

There are arthritises caused by autoimmune disease, but they're closely linked gluten intolerance.

Anyway, I really recommend anyone have arthritis in many joints go see a rhuematologist! I have been suffering for years and years and I finally was diagnosed with Ankylosing Spondylitis and the treatment for it seems to be helping! Why'd I suffer all those years?

[slpinsd]

Thanks for this thread. I'm having problems with joint pain, too. I definitley think I notice it with glutening. It is primarily in the knees, but sometimes my elbows. When I wake up in the morning it feels like a tight, sharp stabbing pain/ache in the knees. Last night, it seemed to get worse after I ate, (but not gluten) and I woke up with aching knees and elbows. I think the elbow problem is from my cubital tunnel, but I am wondering if I should see a rheumatologist- because is it from food intolerances or maybe fibro/RA??? Help! Is this familiar to anyone?

[lonewolf]

Thanks for this thread. I'm having problems with joint pain, too. I definitley think I notice it with glutening. It is primarily in the knees, but sometimes my elbows. When I wake up in the morning it feels like a tight, sharp stabbing pain/ache in the knees. Last night, it seemed to get worse after I ate, (but not gluten) and I woke up with aching knees and elbows. I think the elbow problem is from my cubital tunnel, but I am wondering if I should see a rheumatologist- because is it from food intolerances or maybe fibro/RA??? Help! Is this familiar to anyone?

Like I said in my previous post - I discovered I had other food intolerances and got better when I eliminated ALL of those foods. The rheumatologist (2 of them actually) told me that changing my diet wouldn't help. When I went back, excited that I was getting better WITHOUT their medications I was told that it was crazy to think that what I ate would affect how I felt. At that point I realized I was on my own if I wanted to get all the way better. I'm not saying don't go to a rheumatologist, but be careful of what they tell you about your diet.

I would suggest finding a doctor in your area that does the ELISA testing - it's not foolproof, but it's a good starting point. Or you could try a modified fast (rice, vegetables and fruit) for a couple of days, see how you feel and then start adding foods, one at a time and see what you might react to. There's a really good chance that you have other foods to eliminate besides gluten.

[mmaccartney]

Thought I'd post again!

My artihritis usually flares up with glutening, however lately it's been coming back bad. Not sure if it is the changes in weather as spring is coming, I know I haven't been glutened!

Today, and for the past few days my hips have been bad, my lower back has been quite painful. My hands, wrists and arms are much worse then normal. I'm having trouble typing, and even last night I was having trouble opening pill bottles (having to hit the painkillers again shows my arthritis is acting up!) The worst was last night when trying to grasp the blanket to pull it up to my shoulders. The pain that shot through my thumb, fingers and wrist was awful, my wife was concerned when I yelped in pain over such a simple action.

Well, something to tell my Rhuemy when I see her down the road... I don't take my NSAIDs like I should as the arthritis usually is reactive based on glutening and the inflammation had subsided. I suppose I should start them again but they are sooo tough on the tummy!!!

I guess I should look at the bright side. my rheumy has a mother that has Celiac disease and is very sympathetic, and understanding. She has not dismissed anything I've said to her! To have such an understanding dr is awesome, I just wish she was my GI doc as well!!!

Yes, go see a Rheumotologist. They can certainly help in the long run and should be able to give you some things to help out with the pain, and the inflammation which is causing the pain. I take Relafen (celebrex has lactose in it!) and Vicoden for pain as needed.

[janet75]

To what's been said about joint pain and other food intolerances. On the urging of a friend, I went to see an allergist and went through food testing. I was shocked at the findings. First, the guy was very familiar with celiac disease and said YES, food allergies will definitely play heck with your body and cause you pain and fatigue. In addition to testing positive to allergies for almost everyting inhaled, it turns out I am allergic or intolerant to MILK, SOY, CORN, and here's a big surprise, GLYCERINE! Glycerine is in just about as many things as wheat. The big surprise was my reaction to corn, I reacted like some people do to peanuts - I couldn't breathe and my throat swelled shut. Luckily, they could reverse the effects.

But for everyone that is wondering if other food allergies or intolerances can play a part in pain, I have found at least one doctor that says definitely yes.

[Jnkmnky]

I just had a week of joint pain. I have so much fear tied up into joint pain. strange history with allergic reaction to benzodiazapines. Anyway, my dh was home for two weeks and we all went out to dinner a few times. I was hyper cautious with my celiac disease kid, but for myself, I ordered things like bbq ribs without checking the sauces. I ate seasoned rice at the mexican place, seasoned meats... Ok. If I didn't have the severe BRAIN FOG along with the joint pain, I'd still be frightened that the joint pain was independent of any gluten, but the brain fog was so crippling, that I'm sure the two were connected and a direct result of gluten. The fog cleared bfore the joint pain. I don't know which is worse, frankly. Both were debilitating. I was unable to stand on my feet for more than a few SECONDS before the pain was too much to endure. Thank God... THANK GOD it's just about all gone. My hands still feel weakened. Like holding onto something is a challenge. I would love to help others who are in this situation but don't realize it's the GLUTEN. There are so many people suffering and they don't know the solution is in their diet!!!!

[Ursa Major]

Okay, I won't address all of you separately, but have seen many things I have in common with most of you. I used to have such awful pain everywhere, that I was on codeine 24 hours a day, just to manage, as it just took the edge off the pain.

Initially, the pain went away almost completely (I don't think it will ever be totally gone, I've had it from the age of three). But after three months gluten free it came back. That's when I figured out (pretty much by stumbling onto links somebody here posted) what caused the joint, muscle and back pain.

I now know that lectins cause the joint pain (as well as gastrointestinal symptoms), and salicylates cause the generalized pain (it feels like my body is on fire pretty much, even my skin will ache).

I will be more specific (especially because somebody suggested to start out with RICE, veggies and fruits): I cannot tolerate any grains at all. In January, after not having any lectins for three months (I realized they were a problem two weeks after eliminating gluten), I tested a couple of them, to see if I had been right.

Here is a list of the lectin groups: All grains (including rice and corn), all dairy, eggs, all legumes (including soy and peanuts), and all nightshades (potatoes, tomatoes, peppers, eggplant).

I ate rice one night. Within an hour I had a terrible stomach ache. By the next day ALL my joints and my back were aching so badly that I could hardly move, and had to take codeine to be able to even get out of bed (that's the way it used to be for many years). I also had terrible diarrhea that day, as well as gas and intestinal cramps, and I had asthma (I woke up wheezing). I did not have gluten at all, but ate fresh vegetables and beef with the rice (things I ate every day). The rice was the sole culprit of all those symptoms.

A few days later I tried scrambled eggs. Again, bad stomach ache right after. I went to bed at 10:00 PM that night (which is early for me, I am a night owl). When I woke up the next day, I looked at the clock and assumed that it had stopped, as it said that the time was 3:00 PM! But it was on time, the eggs had pretty much 'put me out' all night and most of the day. I also had terrible pain in all my joints and my back again, was in an awful mood, depressed, irritable, stomach and bowel problems, diarrhea.

So, I decided to stop testing any more lectins then.

In December I had stopped using most foods high in salicylates (my list at that point was woefully incomplete, though, but just cutting some of them out was helpful). Then, also in January, I decided to test that theory, and one Saturday had six chewable kids Aspirin (pure salicylic acid, don't try that if you suspect a salicylate intolerance, I was ignorant of the fact that it could have put me into anaphylactic shock), and for good measure ate some honey, a few grapes, an orange and some almonds as well. That night I was feeling some stomach discomfort, but thought that maybe I had been wrong, since I was otherwise feeling fine.

When I woke up the next morning, I felt like I was on fire! I was aching everywhere, it was awful. Again, I spent two days on codeine. But I haven't taken any since, because I am being very careful of what I eat now.

The foods that are the worst offenders when it comes to salicylates are (in order of severety of symptoms, with the worst ones first): All herbs and spices (the only seasonings I can use are sea salt and some parsley), honey, all berries, dried apricots and dates, currant, loganberry, prunes, raisins, pickles, wine, cider vinegars, juices, all teas (including fruit and herbal teas) except for chamomile tea (the only things I can still drink are water and chamomile tea), all fruit except for peeled pears, all oils except for cold pressed sunflower oil, all nuts (a few hazelnuts are acceptable).

The only completely safe vegetables are bamboo shoots, green/white cabbage, celery, iceberg lettuce, rutabaga. I limited amounts I can have brussel sprouts, chives, garlic, green peas, leek, red cabbage, shallots. And now and then I can have some carrots, cauliflower, green beans, onion, turnip.

Sometimes I cheat on the salicylates (since they don't damage my intestines), but the pain will come back. I don't do it very often.

I completely avoid all lectins, as cheating on those is dangerous to my health, and the joint pain is crippling. Plus, my joints will fail on me when eating them! After I had the rice and eggs I had to be very careful going up and down stairs, as my knees and ankles would give out on me (a common occurence before I eliminated them, I was in constant fear of falling down the stairs, and ALWAYS hold onto the rail).

So, personally I think trying an elimination diet should include eliminating rice, because I know from experience that it isn't a food everybody can tolerate at all.

Well, gotta go, my grandchildren just arrived!

[Ann1231]

Ursula, thank you for the specific foods you mentioned. My dr. told me last week to follow a similar plan of avoiding nightshades, grains, dairy, legumes, etc. I'm not sure exactly what that leaves me to eat but I'm hoping to feel better with this. I thought it might be impossible to do but your post shows that it is indeed possible!