Worried My Joint Pain Is Something More

[nvsmom]

I'm worried about my joint pains. In the past, I've been a real "suck it up and get on with it" sort of person. I tend to avoid doctors after they brushed me off in my youth; I developed the attitude of "they can't do anything to fix it so why bother going". I only went to the doctor if a flu turned into a secondary infection and I needed antibiotics. Then a friend encouraged me to get tested for celiac. It was positive. When I went for a follow up appointment, I requested vitamin levels and TSH be tested based on the advice of this board (thank you all); it was positive for (Hashimoto's) hypothyroidism. Huh.

I now know that I have a tendency to develop autoimmune diseases and have for a long time (I had extreme thrombocytopenia (ITP) almost 20 years ago). I've been having periodic joint pain for years, and although I know some is arhritic from sports injuries like my knees, other pains are suspicious to me. I've had weakness and pain in my left shoulder for the entire summer, and now I keep feeling flu-like and the pain is into my fingers, hands, and elbows on both sides. It's done that a few times in the past. The joints feel weak, like there is too much fluid in the joints, and hurt when I use them but just feel stiff when I don't. Holding the ipad hurts. Cutting my preschooler's food hurts. It's not awful but it's there. If I curl up in my sleep, my arms (hands especially) feel like I've slept on them very wrong; it hurts a bit more in the morning. They are not red or warm (usually ice cold) but they might be very mildly swollen.

I've written it off for years. Then when I was diagnosed, I wondered if my pains was celiac or hypothyroid related. I now don't think it's celiac related because I've been gluten-free for 3 months and my shoulder is the same and my arms are worse.

Then I remembered that I had my old med records from the first time I had this happen. I had thought it was RA and had tests done. I did not have RF factor so my doctor dismissed it and said to come back if it didn't go away (it did in about 3 months). She said I could get RA one day. Looking at my records, I found that she ran a ANA test on me and it was 1:160 and speckled which can indicate with my low hemocrit and hemoglobin (along with my symptoms) RA or Lupus or Unspecified Connective Tissue Disease (UCTD). I looked into Lupus and found the strong link to ITP (thrombocytopenia).

I'm quite nervous. I almost wish I had ignored my symptoms and never been tested. Almost. I guess I'm looking for advice on if this sounds like a celiac related joint thing. My knees usually hurt, my hip flexors usually catch, and I have a bad lower back with bulging discs (one which burst and caused a bit of paralysis a couple years ago). I thought that might be my celiac related, and sport injury, pains. Is the hand pain common too? Feeling slightly flu-like for 3 weeks is worrisome too. Celiac related?

My celiac was untreated for over 30 years and I think my Hashi's has been around for 20 years (based on old high TSH tests my idiot doctor never told me about) so it could have messed me up further...

Anyone with connective tissue AI who can dismiss or confirm my corcerns, please let me know what you think too. I am one who gets AI's in clusters ... what do you think?

Thanks a bunch.

[GottaSki]

Hi Nicole!

I hate hearing someone else has a similar history to me - I went undiagnosed for decades - a combination of me toughing out most minor symptoms and doctors completely dismissing symptoms that I brought to them repeatedly as stress, overwork, hormones, motherhood or depression.

Although AI disorders do run in together - I wouldn't jump to you having another AI straight away. Being undiagnosed for decades, I too had periodic "flu bugs" that lasted for several weeks - I now call them "flares" because I very rarely had a temp with these mysterious "bugs" over the years. I had pains that I thought were sports related - bad knees and back my entire life - followed by my hips popping and fingers, toes hurting (my knees, hips and back are now much stronger and no longer click or slip) - my hand was really sore just prior to celiac dx - I thought it was from pole plants while skiing - nope. I have had hypothyroid symptoms my entire life, but TSH was always normal. Recently I finally had more accurate thyroid testing done and was negative for Hashi's but do have extremely low Free T3 and Free T4. When I initially went gluten-free I had some improvement with digestive issues, but my joint/muscle pain along with brain fog and fatigue got much worse which led me to be diagnosed with fibromyalgia 7 months after celiac disease. Coincidentally I had the exact same ANA to yours a few years before celiac diagnosis. Did your doctor run ESR (erythrocyte sedimentation rate) or CRP (C-Reactive Protein) tests to look for inflammation when the RF was run? If not I'd get your primary to run them just to rule out other AI disorders for now. Mine were run several times - RF, CRP and ESR always normal - chief of Rhuematology dismissed me as not having any autoimmune disease - just another expert that didn't have Celiac Disease in his education or experience!

I now believe that undiagnosed celiac disease damaged my small intestine to the point that I was unable to absorb many nutrients that the body needs to run many systems. Without these nutrients - what is a body to use to function properly?

A couple thoughts:

First - three months is still very early after going years with undiagnosed with Celiac and Hashi's - it will take time to heal and the process is often a step forward, followed by two backward. I am not suggesting to do nothing - just it helped me when I accepted this could be a long road to healing my gut.

Second - one or more folks on this board suggested to me when I was several months gluten-free but having much worse joint pain that I should try removing dairy and nightshades (tomato, potato (not sweet potato), ALL peppers (except black peppercorns) and eggplant). I did briefly and it didn't seem to help so I kept eating them. Eventually when all my symptoms were far worse (had about an hour a day vertical) I did a very strict elimination diet. Found nightshades were the primary cause of my joint/muscle pain - so I strongly suggest removing them for at least a month or more to see if your joint pain improves. I wouldn't move towards full elimination diet until you've tried to remove both gluten and nightshades for awhile.

Third - have you started hormones for Hashi's - time gluten free may improve Hashi's, but your thyroid can definitely play havoc with your ongoing symptoms.

Fourth - take it easy, but do try to get some exercise - some walking or swimming each day - without it joints/muscles tend to get worse.

Fifth - Epsom salt baths help ease the joint pain -- I like two full cups in a warm bath on mornings that I am having a tough time moving and have been known to take an extra one in the evening on painful days. The warm weather has made this less enjoyable, but Fall is coming!

Hang in there

[cyberprof]

nvsmom, I am sorry to hear of your pain. I have no specific experience, but I too had the "suck it up" mentality with docs after being dismissed too many times.

However, I do know that those potential diseaes - RA especially - are better treated earlier rather than later. So good luck and find a good doc. There are people here who might be able to recommend a good rheumatologist, or find a good RA forum like this gluten forum. Best of luck.

[Findin my way]

Hi nvsmom,

I too had ITP as a teen. I couldn't keep my platelets above 12, 000 without large doses of prednisone. I finally had to beg to have my spleen removed. Since then my platelets have been on the high side of normal. It's so odd. I've never met anyone else with ITP, yet have read about several people on this board having or had it.

I've been gluten free for about 3.5 months. I still have some issues too. I found out just yesterday that I have issues with casein. I've been avoiding dairy and couldn't take it anymore, so yesterday I had a big glass of milk. Well sure enough my chest started to hurt, my hands went even more numb than usual (significantly so) my entire right leg became very sore, my mouth went dry and I became very fatigued. I'm telling you all this to agree with the above comment about trying to eliminate dairy. It certainly won't hurt and it might help.

If I'm still having issues in another month Nightshades will be the next to go.

[nvsmom]

Hi Nicole!

I hate hearing someone else has a similar history to me - I went undiagnosed for decades - a combination of me toughing out most minor symptoms and doctors completely dismissing symptoms that I brought to them repeatedly as stress, overwork, hormones, motherhood or depression.

Although AI disorders do run in together - I wouldn't jump to you having another AI straight away. Being undiagnosed for decades, I too had periodic "flu bugs" that lasted for several weeks - I now call them "flares" because I very rarely had a temp with these mysterious "bugs" over the years. I had pains that I thought were sports related - bad knees and back my entire life - followed by my hips popping and fingers, toes hurting (my knees, hips and back are now much stronger and no longer click or slip) - my hand was really sore just prior to celiac dx - I thought it was from pole plants while skiing - nope. I have had hypothyroid symptoms my entire life, but TSH was always normal. Recently I finally had more accurate thyroid testing done and was negative for Hashi's but do have extremely low Free T3 and Free T4. When I initially went gluten-free I had some improvement with digestive issues, but my joint/muscle pain along with brain fog and fatigue got much worse which led me to be diagnosed with fibromyalgia 7 months after celiac disease. Coincidentally I had the exact same ANA to yours a few years before celiac diagnosis. Did your doctor run ESR (erythrocyte sedimentation rate) or CRP (C-Reactive Protein) tests to look for inflammation when the RF was run? If not I'd get your primary to run them just to rule out other AI disorders for now. Mine were run several times - RF, CRP and ESR always normal - chief of Rhuematology dismissed me as not having any autoimmune disease - just another expert that didn't have Celiac Disease in his education or experience!

I now believe that undiagnosed celiac disease damaged my small intestine to the point that I was unable to absorb many nutrients that the body needs to run many systems. Without these nutrients - what is a body to use to function properly?

A couple thoughts:

First - three months is still very early after going years with undiagnosed with Celiac and Hashi's - it will take time to heal and the process is often a step forward, followed by two backward. I am not suggesting to do nothing - just it helped me when I accepted this could be a long road to healing my gut.

Second - one or more folks on this board suggested to me when I was several months gluten-free but having much worse joint pain that I should try removing dairy and nightshades (tomato, potato (not sweet potato), ALL peppers (except black peppercorns) and eggplant). I did briefly and it didn't seem to help so I kept eating them. Eventually when all my symptoms were far worse (had about an hour a day vertical) I did a very strict elimination diet. Found nightshades were the primary cause of my joint/muscle pain - so I strongly suggest removing them for at least a month or more to see if your joint pain improves. I wouldn't move towards full elimination diet until you've tried to remove both gluten and nightshades for awhile.

Third - have you started hormones for Hashi's - time gluten free may improve Hashi's, but your thyroid can definitely play havoc with your ongoing symptoms.

Fourth - take it easy, but do try to get some exercise - some walking or swimming each day - without it joints/muscles tend to get worse.

Fifth - Epsom salt baths help ease the joint pain -- I like two full cups in a warm bath on mornings that I am having a tough time moving and have been known to take an extra one in the evening on painful days. The warm weather has made this less enjoyable, but Fall is coming!

Hang in there

Thanks Lisa. I appreciate it.

Wow, your symptoms sure do sound similar. That flu-like feeling is a funny one... like I'm not yet sick but it's coming, and then it doesn't. And yah! No temp even though it feels like you could... but I gave up taking my temp because I rarely hit 98F. LOL

It's good to hear your joints are improving. I thought my shoulder was, it felt better for about a week (3 weeks ago) but it didn't last. I can't imagine my knees and back improving... That would be a treat since I damaged them back in high school. I expect my upper body to get better since symptoms come on so suddenly... Those are the ones that worry me.

I am calling myself Hashi's, my doctor won't give my hypothyroidism a name but I figure, what else could it be?? My thyroid peroxidase anibodies and T4 were "normal" according to my doctor, but I'm getting smarter and got copies of all my tests. It turns out that my TPOAb was 33.8 and normal is 0.0-34.0, and T4 was 11.6 with a normal of 10.0-25.0. Sheesh! Close enough! LOL With a TSH of 13-14, I call myself Hashis. LOL

I think they ran the ESR. It's hard to read since it's a photocopy of a fax from 1997. The lab report has a sed. rate test which was normal (9 with a ref range of 0-20). There is no CRP test listed. Just the usual blood work.... I will look into those tests. Thanks. It's probably time for another ANA too, eh? It's been a while. lol

My vitamin levels are all normal to high before I started eating gluten-free so unless there is a problem in my body with actually using the available nutrients, which I wouldn't be surprised at at this point, then I should be okay there

And yes. You are right. Three months in is still very early on. And while I've had great improvements in my gastro issues and migraine frequency, I attributed the areas without improvement (fatigue, morning headaches, general achiness) to my newly diagnosed hypothyroidism which is not yet optimally treated. I just didn't expect to get worse in some areas. I feel like I'm typing in oversized leather gloves... but you're right. after a lifetime of celiac, I'm sure I'm not healed yet.

I'll start eliminating foods, or doing it more thoroughly. I am currently lactose intolerant so I don't drink milk but I haven't given up cheese, yogurt or icecream... or my whey protein powder. I guess I should do all the dairy and see if helps. I'll try the nightshades too. That will be easy since I'm not a big potato person... Giving up chees though? Eek. That's almost harder than gluten.

I started Synthroid at only 50mcg about 3 weeks ago... shortly before my hands started bugging me to be honest. I know the dose is too low, and I'm guessing I'll need T3 eventually. I'll push my doctor to up my dose a bit faster; I think he's being too slow with me.

I do need to exercise more. I coach a few kiddie teams so that's something. I'm a bit worried about coaching basketball with my stiff hands but who knows, when I get them going they might do fine.

And thanks again for taking the time to write such a comprehensive reply. It was kind of you.

[nvsmom]

nvsmom, I am sorry to hear of your pain. I have no specific experience, but I too had the "suck it up" mentality with docs after being dismissed too many times.

However, I do know that those potential diseaes - RA especially - are better treated earlier rather than later. So good luck and find a good doc. There are people here who might be able to recommend a good rheumatologist, or find a good RA forum like this gluten forum. Best of luck.

Thanks Cyberprof. The pain is managable... so many around here have it much worse than I do.

I was thinking along the same lines as you. There are some proactive things the medical community could do to slow progression of AI's like RA so it's probably better to know. Plus we could be on the lookout for complications that go along with those AI's if (heaven forbid) I have them.

Your signature caught my eye. I was diagnosed celiac partially because I was looking into it for my oldest son (9). He gets stomach aches, C and his growth is slowing. He used to be 75% for height and now he's about 25%. His 7 year old brother is now taller than him. He was tested celiac but it was negative. I am slowly converting all of my kids to gluten-free though with the hopes that it will help their health... they have one box of Cheerios to finish off and that's it. He also has a mildly high TSH and could have Aspergers (very mildly)... Anyways, seeing your grown son's success really gave me a burst of hope that we're going in the right direction (even if our doctor doesn't agree).

[nvsmom]

Hi nvsmom,

I too had ITP as a teen. I couldn't keep my platelets above 12, 000 without large doses of prednisone. I finally had to beg to have my spleen removed. Since then my platelets have been on the high side of normal. It's so odd. I've never met anyone else with ITP, yet have read about several people on this board having or had it.

I've been gluten free for about 3.5 months. I still have some issues too. I found out just yesterday that I have issues with casein. I've been avoiding dairy and couldn't take it anymore, so yesterday I had a big glass of milk. Well sure enough my chest started to hurt, my hands went even more numb than usual (significantly so) my entire right leg became very sore, my mouth went dry and I became very fatigued. I'm telling you all this to agree with the above comment about trying to eliminate dairy. It certainly won't hurt and it might help.

If I'm still having issues in another month Nightshades will be the next to go.

Oh wow, it is RARE to find a fellow "ITP"er without a spleen. My ITP hit hard 20 years ago when I was 19 and went on the pill. Within a couple of months my period would not stop... I know the doctors said it was a coincidence but I really doubt it now. My platelet count was 2 at one point. LOL I remember the doctors telling my not to sneeze or cough hard so I wouldn't get a bleed in my head.

I did the prednisone too but it crashed hard again. I think from diagnosis to splenectomy was 2 months. Pretty quick... Eating gluten the whole time.

My platelets are on the high end of normal now too! I have always thought that was odd as well.

I will eliminate my dairy. I think you all are right. It can't hurt so I might as well try... tomorrow after I finish off the really nice swiss cheese I bought.

I hope the dairy elimination works well for you. Good luck and thanks.

[Findin my way]

My ITP was officially diagnosed at 14, but I probably had it much longer than that. At 6 years old I had a tooth pulled and the dentist called my mom in a panic because my mother didn't tell him I was a "bleeder." Apparently the area bled for half an hour or something. When I was 11 I started getting 3 hour nose bleeds. The lowest my platelets were recorded at was 11k. I was told anything under 10k would mean a blood transfusion. Now this was all in the mid eighties when they were just starting to test the blood for HIV. It was a very scary time to have a blood disease.

May I ask what part of Canada you're in? My ITP journey was in a new hospital in Mississauga. It was state of the art and they had the best of the best doctors. At least in the docs' minds they were the best. In my mind they were jerks who didn't care about anything. My hatred of doctors started over 25 years ago and hasn't stopped.

Boy that swiss cheese sounds really good right now. I think I'm having casein withdrawal. Ugh!

[nvsmom]

My ITP was officially diagnosed at 14, but I probably had it much longer than that. At 6 years old I had a tooth pulled and the dentist called my mom in a panic because my mother didn't tell him I was a "bleeder." Apparently the area bled for half an hour or something. When I was 11 I started getting 3 hour nose bleeds. The lowest my platelets were recorded at was 11k. I was told anything under 10k would mean a blood transfusion. Now this was all in the mid eighties when they were just starting to test the blood for HIV. It was a very scary time to have a blood disease.

May I ask what part of Canada you're in? My ITP journey was in a new hospital in Mississauga. It was state of the art and they had the best of the best doctors. At least in the docs' minds they were the best. In my mind they were jerks who didn't care about anything. My hatred of doctors started over 25 years ago and hasn't stopped.

Boy that swiss cheese sounds really good right now. I think I'm having casein withdrawal. Ugh!

Hmmm, I used to get long nosebleeds too but I think it's because I'm in Calgary and it's so dry here. A humid day is 40% and if we have a fog, everyone comes to the window to look. LOL

The doctors borderline about the blood transfusion with me. This was '92 and it seemed scary then too, so they let me decide if I wanted it. I passed on it but they did give me lots of gamma gobulin to get my platelets up. And a typo on that earlier platelet count... it was 2K, not 2. LOL

I can imagine it must have been hard to manage ITP for a long while. I know I had it just a short time since just a year prior I had a few surgeries on my knee without any bleeding issues.

As I said, we're in Calgary. I was treated in a major cancer clinic which is also respected. I went through my med notes of that time and found (in a narative, not a lab report) I had an ANA of 1:160 then too... That's about 5 years before the one that first concerned me from 1997. Sheesh.

I trusted doctors up until about 10 years ago until I realized how little they did for me. I even used midwives to have my kids at home so I could avoid unnecessary medical procedures and complications that could happen in a hospital.

...I wonder if the doctors realize how much of the public's regard for them has fallen off as of late?

Oh, I wanted to mention Goat cheese. It's really good on salads and melted onto things and it doesn't cause the problems that many lactose intolerant people have. Perhaps check it out.

[Findin my way]

I passed on it but they did give me lots of gamma gobulin to get my platelets up. And a typo on that earlier platelet count... it was 2K, not 2. LOL

I knew what you meant. Also I'm not even sure the gamma gobulin was available in '85. Prednisone and splenectomy were the only treatments I ever heard of for ITP.

I trusted doctors up until about 10 years ago until I realized how little they did for me. I even used midwives to have my kids at home so I could avoid unnecessary medical procedures and complications that could happen in a hospital.

You were allowed to have a mid-wife?!? Geez, when I was pregnant they listed me as high-risk and I had to see all kinds of specialists. My platelets had been in the 400's (thousands) for ten years, but I was still listed as high risk. Funny enough my platelet count did drop to the mid 200's during the pregnancy. I even had to be monitored by a hematologist. He was so creepy too. He insisted I get into a gown (which I didn't do) so he could check for petechia. I told him I was well aware of what petechia looks like and I didn't have it. Man he was soooooo creepy!

Oh, I wanted to mention Goat cheese. It's really good on salads and melted onto things and it doesn't cause the problems that many lactose intolerant people have. Perhaps check it out.

Unfortunately I think my problem is with the casein, which is the protein in dairy. I had lactose free yogurt and had the same problems, so I don't think it's the lactose. I'll let my gut heal a little more and then try again.

[GFinDC]

Hi Nicole,

I get joint pain from nightshades and soy. So just backing up the idea of nightshades possibly causing a problem. It may take awhile after stopping them for symptoms to go away though. A month and half is not too long for symptoms to resolve. So if you stop them don't expect a change within a week.

Neroli (The Shroomster) has RA and may be able to offer advice on here treatment.

Hard cheese are mostly casein, so they are a good way to test for a casein reaction.

[nvsmom]

You were allowed to have a mid-wife?!? Geez, when I was pregnant they listed me as high-risk and I had to see all kinds of specialists. My platelets had been in the 400's (thousands) for ten years, but I was still listed as high risk. Funny enough my platelet count did drop to the mid 200's during the pregnancy. I even had to be monitored by a hematologist. He was so creepy too. He insisted I get into a gown (which I didn't do) so he could check for petechia. I told him I was well aware of what petechia looks like and I didn't have it. Man he was soooooo creepy!

I don't think I ever asked permission now that I think about it. LOL I think my doctor only saw me afterwards for a 6 month check up. My midwives knew about the ITP, checked my blood a couple of times, and that was that.

... And i was able to avoid creepy doctors. Ick.

My ITP is viewed as a non-issue by the medical community as far as I can tell. I think they consider me "cured". I get a blood test done a bit more often than most but that's all. No one asks about it... I have never seen a hematologist since my initial treatment 20 years ago, and his specialty was oncology.

[nvsmom]

Hi Nicole,

I get joint pain from nightshades and soy. So just backing up the idea of nightshades possibly causing a problem. It may take awhile after stopping them for symptoms to go away though. A month and half is not too long for symptoms to resolve. So if you stop them don't expect a change within a week.

Neroli (The Shroomster) has RA and may be able to offer advice on here treatment.

Hard cheese are mostly casein, so they are a good way to test for a casein reaction.

As of today, I'm cutting out nightshades. So if it's related, I could expect to see improvements by Halloween. I don't eat soy already (and I've learned it's hard on hypo patients too) so that's no problem for me.

I guess I should probably cut all the dairy at the same time. Hmmm. I'll have to google the best way to approach an elimination diet. One at a time or all at once and then add them back one at a time.

I used to think of myself as not a picky eater. No allergies or anything. I knew drinking milk bothered me but it wasn't a big deal. Now though... quite the 180 degree turn! LOL

Thanks for the advice, GFinDC.