Jump to content
  • Sign Up

Archived

This topic is now archived and is closed to further replies.

Hallelujah!

15 Year Old Daughter Sudden, Severe Onset Multiple Joint Pains. Anyone Else?

Recommended Posts

Hi everyone, I am writing in hopes of getting some direction in regards to our daughter.  Three months ago this week she began experiencing sudden onset joint pain in her shoulders and hips.  The pain was so bad it would wake her up at night.  Since then it has spread to other joints, . . . the knees (which also get warm and swollen), back, ankles, heels, elbows.  These are her only symptoms.  She is not experiencing any stomach problems.  She has yet to have a day free of pain and her level is about a 4-6 on a daily basis. 

 

We have been to a rheumatologist and she has received two negative results for arthritis.  She has been tested for Lyme, strep, thyroid and ANA.  All were negative as well.  She is currently on Celebrex and takes 2-4 Tylenol a day.  I started her on a gluten-free diet one week ago today, after hearing a story about a similarly aged girl having the same symptoms.  After five years of being gluten-free, this girl is virtually free of pain and back to normal.  Our teen has not experienced any relief from her pain as of now.

 

Our child has been tested for Celiac and it came back with a 3 for sensitivity (the range is up to 19 being negative).  So it appears to me as if that isn't the cause either.  We are continuing gluten free in hopes that this is the solution.  

 

Hoping to get your thoughts, for which I am much appreciative.  Thank you! 

Share this post


Link to post
Share on other sites

Your poor girl.   :( When my joint pain started I was about 5-6 years older than your daughter. It too started very suddenly, after an illness, and made my joints hot and swollen. It lasted a couple of months and then faded. When future joint pain happened, it no longer swelled or got hot, but as I aged, the pain would last longer and it started happening more often.

 

I finished my last bout of joint pain just over 8 months ago, and I am now 14 months gluten-free.

 

Do you know what tests were run on your daughter? Many doctors claim to have had tested a patient but there are many celiac tests available and more than one should be run because the tests have a sensitivity between 95 and 75% (meaning they miss up to 25% of celiacs). This is the full celiac panel:

  • tTG IgA and tTG IgG
  • DGP IgA and DGP IgG
  • EMA IgA
  • total serum IgA (a control to make sure you make enough IgA for the IgA celiac tests to be accurate - 5% of celiacs don't have enough IgA
  • AGA IgA and AGA IgG (an older less reliable test that shows gliadin sensitivity rather than attempted villi damage like in the first three tests)

 

She must have been eating gluten (approx 2 slices of bread per day for 2 months) to have a (fairly) accurate test.

 

What about her thyroid tests? Most docs will just run the TSH and if it is anywhere within the normal limit (which can be as broad as 0.2-6.0) they declare one normal. The problem with that is that the normal range is set up so 95% of the population falls into the normal range BUT about 10% of the population has thyroid problems - they miss about half of all thyroiditis patients.  

 

For thyroid testing, I would recommend:

  • TSH - most feel good near a 1, but there are exceptions
  • Free T3 and Free T4 - most feel good when the results are in the 50-75% range of your own lab's normal reference range. FT3 is the active hormone and probably the most imprtant to look at
  • TPO Ab - if it is high, it means the thyroid is being attacked and the patient probably needs treatment 

If you are sure testing was adequate, then going gluten-free is probably a very good idea. Non-celiac gluten intolerance (NCGI) causes the same symptoms as celiac disease but without the villi damage. Just be aware that joint pain is often the last symptom to resolve on the gluten-free diet. It can take months to years on the gluten-free diet before improvement is seen.  For me personally, I got worse from 3-6 months gluten-free but after that my joints improved greatly and feel better than they have in years.   :)

 

Best wishes and welcome to the board.

Share this post


Link to post
Share on other sites

My niece had swelling and severe pain in her joints.  She was losing the ability to move her joints from the swelling and pain.  She was using a wheelchair.  She was diagnosed with Reflex Sympathetic Dystrophy Syndrome.  (My sister-in-law refuses to discuss any of the medical testing, saying it is just personal information.  They went to 3 specialist and got 3 diagnoses for RSDS.  My sister-in-law refused to accept it.  Well guess what???  She told my niece she doesn't have it.  My niece is no longer in a wheel chair and has been dancing in flag corps.  Don't ask me how this worked out , but it did.)  It may be a passing condition.  It may have vague reasoning to reach a diagnoses.  (There was some type of connection to my niece's health history of infant life support ~Echmar machine destroys the carotid artery in the neck.)

 

Depending on your daughter's age and stage of puberty can be a HUGE factor in what is causing these symptoms.  A gluten free diet can be very helpful.  It can be very healthy and you are eliminating a protein that can cause irritation/inflammation.  Not to mention a lot of processed junk.  (The top 8 allergens are the most commonly irritating proteins for our systems.)

Share this post


Link to post
Share on other sites

Your poor girl.   :( When my joint pain started I was about 5-6 years older than your daughter. It too started very suddenly, after an illness, and made my joints hot and swollen. It lasted a couple of months and then faded. When future joint pain happened, it no longer swelled or got hot, but as I aged, the pain would last longer and it started happening more often.

 

I finished my last bout of joint pain just over 8 months ago, and I am now 14 months gluten-free.

 

Do you know what tests were run on your daughter? Many doctors claim to have had tested a patient but there are many celiac tests available and more than one should be run because the tests have a sensitivity between 95 and 75% (meaning they miss up to 25% of celiacs). This is the full celiac panel:

  • tTG IgA and tTG IgG
  • DGP IgA and DGP IgG
  • EMA IgA
  • total serum IgA (a control to make sure you make enough IgA for the IgA celiac tests to be accurate - 5% of celiacs don't have enough IgA
  • AGA IgA and AGA IgG (an older less reliable test that shows gliadin sensitivity rather than attempted villi damage like in the first three tests)

 

She must have been eating gluten (approx 2 slices of bread per day for 2 months) to have a (fairly) accurate test.

 

What about her thyroid tests? Most docs will just run the TSH and if it is anywhere within the normal limit (which can be as broad as 0.2-6.0) they declare one normal. The problem with that is that the normal range is set up so 95% of the population falls into the normal range BUT about 10% of the population has thyroid problems - they miss about half of all thyroiditis patients.  

 

For thyroid testing, I would recommend:

  • TSH - most feel good near a 1, but there are exceptions
  • Free T3 and Free T4 - most feel good when the results are in the 50-75% range of your own lab's normal reference range. FT3 is the active hormone and probably the most imprtant to look at
  • TPO Ab - if it is high, it means the thyroid is being attacked and the patient probably needs treatment 

If you are sure testing was adequate, then going gluten-free is probably a very good idea. Non-celiac gluten intolerance (NCGI) causes the same symptoms as celiac disease but without the villi damage. Just be aware that joint pain is often the last symptom to resolve on the gluten-free diet. It can take months to years on the gluten-free diet before improvement is seen.  For me personally, I got worse from 3-6 months gluten-free but after that my joints improved greatly and feel better than they have in years.   :)

 

Best wishes and welcome to the board.

 

 

Your poor girl.   :( When my joint pain started I was about 5-6 years older than your daughter. It too started very suddenly, after an illness, and made my joints hot and swollen. It lasted a couple of months and then faded. When future joint pain happened, it no longer swelled or got hot, but as I aged, the pain would last longer and it started happening more often.

 

I finished my last bout of joint pain just over 8 months ago, and I am now 14 months gluten-free.

 

Do you know what tests were run on your daughter? Many doctors claim to have had tested a patient but there are many celiac tests available and more than one should be run because the tests have a sensitivity between 95 and 75% (meaning they miss up to 25% of celiacs). This is the full celiac panel:

  • tTG IgA and tTG IgG
  • DGP IgA and DGP IgG
  • EMA IgA
  • total serum IgA (a control to make sure you make enough IgA for the IgA celiac tests to be accurate - 5% of celiacs don't have enough IgA
  • AGA IgA and AGA IgG (an older less reliable test that shows gliadin sensitivity rather than attempted villi damage like in the first three tests)

 

She must have been eating gluten (approx 2 slices of bread per day for 2 months) to have a (fairly) accurate test.

 

What about her thyroid tests? Most docs will just run the TSH and if it is anywhere within the normal limit (which can be as broad as 0.2-6.0) they declare one normal. The problem with that is that the normal range is set up so 95% of the population falls into the normal range BUT about 10% of the population has thyroid problems - they miss about half of all thyroiditis patients.  

 

For thyroid testing, I would recommend:

  • TSH - most feel good near a 1, but there are exceptions
  • Free T3 and Free T4 - most feel good when the results are in the 50-75% range of your own lab's normal reference range. FT3 is the active hormone and probably the most imprtant to look at
  • TPO Ab - if it is high, it means the thyroid is being attacked and the patient probably needs treatment 

If you are sure testing was adequate, then going gluten-free is probably a very good idea. Non-celiac gluten intolerance (NCGI) causes the same symptoms as celiac disease but without the villi damage. Just be aware that joint pain is often the last symptom to resolve on the gluten-free diet. It can take months to years on the gluten-free diet before improvement is seen.  For me personally, I got worse from 3-6 months gluten-free but after that my joints improved greatly and feel better than they have in years.   :)

 

Best wishes and welcome to the board.

Oh thank you, Nicole, I can't wait to share your story with our sweet girl.  It may give her hope.  She has an ice pack on her knee at this moment and a heating pad on her back.  Three months is a long time to suffer with pain every single day and not know what is going on.  I will check into all the tests she has had thus far.  Your information was so specific and helpful.  You have given me a direction to go in.  I am so happy to hear that you are feeling better than you have in years.  That is truly wonderful news, yeah you!  I am so very grateful that you posted, thank you for your time.  

Share this post


Link to post
Share on other sites

My niece had swelling and severe pain in her joints.  She was losing the ability to move her joints from the swelling and pain.  She was using a wheelchair.  She was diagnosed with Reflex Sympathetic Dystrophy Syndrome.  (My sister-in-law refuses to discuss any of the medical testing, saying it is just personal information.  They went to 3 specialist and got 3 diagnoses for RSDS.  My sister-in-law refused to accept it.  Well guess what???  She told my niece she doesn't have it.  My niece is no longer in a wheel chair and has been dancing in flag corps.  Don't ask me how this worked out , but it did.)  It may be a passing condition.  It may have vague reasoning to reach a diagnoses.  (There was some type of connection to my niece's health history of infant life support ~Echmar machine destroys the carotid artery in the neck.)

 

Depending on your daughter's age and stage of puberty can be a HUGE factor in what is causing these symptoms.  A gluten free diet can be very helpful.  It can be very healthy and you are eliminating a protein that can cause irritation/inflammation.  Not to mention a lot of processed junk.  (The top 8 allergens are the most commonly irritating proteins for our systems.)

 

 

My niece had swelling and severe pain in her joints.  She was losing the ability to move her joints from the swelling and pain.  She was using a wheelchair.  She was diagnosed with Reflex Sympathetic Dystrophy Syndrome.  (My sister-in-law refuses to discuss any of the medical testing, saying it is just personal information.  They went to 3 specialist and got 3 diagnoses for RSDS.  My sister-in-law refused to accept it.  Well guess what???  She told my niece she doesn't have it.  My niece is no longer in a wheel chair and has been dancing in flag corps.  Don't ask me how this worked out , but it did.)  It may be a passing condition.  It may have vague reasoning to reach a diagnoses.  (There was some type of connection to my niece's health history of infant life support ~Echmar machine destroys the carotid artery in the neck.)

 

Depending on your daughter's age and stage of puberty can be a HUGE factor in what is causing these symptoms.  A gluten free diet can be very helpful.  It can be very healthy and you are eliminating a protein that can cause irritation/inflammation.  Not to mention a lot of processed junk.  (The top 8 allergens are the most commonly irritating proteins for our systems.)

Thank you so much for your reply to my question.  I had never heard of RSD and have spent hours and hours so far researching joint pains and swelling.  You have shown me that there are things out there that I still need to check into.  It is wonderful that your niece is out of the wheelchair, that is truly something worth celebrating!  I am also going to look into the top 8 allergens.  You are a wealth of information.  Thank you for your help.

Share this post


Link to post
Share on other sites

My pleasure.  :)  There are a LOT of really knowledgeable people around here in many different areas (I have an interest in testing and labs) so if you have more questions, feel free to start more posts with questions. It helps others in the long run too as so many of us have had similar problems.

 

Good luck.

Share this post


Link to post
Share on other sites

I was about her age when I started experiencing joint pain. It definitely wasn't as severe, but it was limiting. You said she was tested for arthritis and her ANA test was negative. When you say ANA test are you referring to Lupus? ANA testing is not just to diagnose Lupus.  Having a positive ANA is a good indication of an autoimmune disorder, but a negative result doesn't rule it out AND on top of that false positives are possible. Basically, it's used in conjunction with other tests to help with a diagnosis. Do you know if the doc did any other testing or just the ANA? It's good that RA/arthritis has been ruled out but there are many more autoimmune diseases. 

 

Do she have any other symptoms? Obviously, she's going to feel horrible, but was there fatigue before this set in? (I always think of it as walking through Jello when I have fatigue issues) Does she have issues with dry eyes, mouth? (I ask because I have Sjogren's) Any tingles in her feet or hands?  

Share this post


Link to post
Share on other sites

Good point about the ANA. It can really vary and isn't specific to anything except trouble. I had positive ANAs when I was 19 and 23ish but have had negative ANAs when retested this past year...I have no idea why, it's not like I lost an autoimmune problem. LOL. ;)

Share this post


Link to post
Share on other sites

That is how mine started. I also test negative for RA and because I psoriasis I got labelled with Psoriatic Arthritis. Gluten free helps but isn't what got rid of all my pain. I had to do a strict elimination diet. This got me off of my DMARD and Celebrex easily within 10 days. I felt better trying an elimination diet than with what any medication did for me all my life. I can introduce more foods and the ones that were troubling at first I eat sparingly but do have them every so often. My Rheumatologist is a little curious of my diet but call is remission. My bloodwork comes back completely clear of any inflammation now. So incredible.

Share this post


Link to post
Share on other sites

emilykay405, thank you for the information.  I have the results of two blood draws that were done on our daughter (K), on different dates.  In addition to other tests, she has had:

 

ANA w/Reflex (ANA Direct) with a "negative" result

Yesterday Nicole gave me the full line-up for Celiac testing.  Unfortunately, K, was only tested for Antibody, IGA tTG.  That is a disappointment since both she and I are now on gluten-free diets.  

 

May I ask you both (emilykay405 and Nicole), when you first started experiencing issues, were there other complaints along with the joint pain?  K only experiences joint pain and minimal swelling/warmth to these areas.  I did ask her about fatigue, tingling, dry mouth . . . she experiences none.  

 

Also, her wrists/hands/fingers and feet/toes are free of any pain and swelling.  After speaking with her family physician yesterday, he is going to review the blood test results he has so far and see if we can't retest her for some things, Lyme, ANA, Sed Rate, CRP.  Might you be able to think of some blood tests that I should specifically request of him?   

 

Once again, I so greatly appreciate you taking the time to respond to me.  You have no idea how much I appreciate it.

Share this post


Link to post
Share on other sites

Oh janpell, you have brought me such joy!  Hopefully this will be the same result for our daughter (K).  I don't know what you mean by an elimination diet though.  Is there somewhere I can research this?  

 

Did you too only have the joint pain or other troubles as well?  After seeing the rheumatologist, because my mother and uncles have psoriasis, the physician was leaning to arthritis from psoriasis as a possible diagnosis.  We went to see the rheumatologist at 8 weeks and she wanted to wait until 12 weeks before labeling K's condition.  I am thankful to her for that.

 

It would be absolutely amazing, answered prayer, if K could follow in your footsteps.  Thank you, Friend.

Share this post


Link to post
Share on other sites

My rheumy regularly does SED rate westergren which will show how much inflammation is in her body. C Reactive Protein will also help determine how much 'activity' she has (as in...when my SED is high my Sjogren's is active). The normal range for my SED lab is 0-20 and I usually run around 45. I've heard of people running much much higher. I also strong arm him into testing my vitamin D regularly. Mine has been chronically low since I started complaining about fatigue in September 2012. Even have D2 prescriptions and D3 supplementation daily it's still low. Low vitamin D will  make you feel run down and may cause some aches/pains. If he hasn't already testing all vitamin levels is a good idea too, just to be on the safe side. 

 

The test that led to Sjogren's diagnosis was ENA Antibody Panel. For the Sjogren's the SSB (La) and SSB (Ro) will both be elevated. There are a couple of other components that are run with this test that can indicate a couple of other autoimmune diseases. 

 

Has she had her thyroid tested yet? It wouldn't hurt either. I did a quick google and she's not too young to start having issues with Hashimoto's Thyroiditis or other thyroid issues. 

 

My internist did so much blood work it was insane. We also found out during this process that I have thalassemia trait. Normal iron testing an ferritin testing kept coming back anemic even after I started on a prescription dose of Iron. Finally she had the lab take a second look and it was determined that the thalassemia trait was causing a false anemia. 

 

I hope you get this figured out quick. Teenage years shouldn't be spent in this kind of pain. 

Share this post


Link to post
Share on other sites

Emilykay405, you are a sweetheart.  I will look into all the bloodwork done so far on K.  I will see where there are gaps and request that those tests be run on her.   K's vitamin D was border-line low as well.   She is taking a fish oil with 1000 mg Vitamin D once a day.  We could recheck that level when we repeat blood labs too.  

 

It was wonderful to find out from you what Sed Rate and CRP are looking for, that was super helpful!

 

Thank you!

 

 

 

Share this post


Link to post
Share on other sites

You are very welcome. I would give about 2 months or so on the vit D supplement and then retest. Vit D is not actually a vitamin in the normal sense and it's absorbed differently so it might take a bit for her levels to rise. The fish oil should help lubricate her joints, so that's good. If she does go low on vit D the doc will most likely prescribe D2. D2 and D3 are not the same and D2 doesn't absorb as readily, it'll still give her a big boost but the D3 should be continued even during the prescription. Once you get results back let us know the numbers and we'll help as best as we can. 

Share this post


Link to post
Share on other sites

You put a smile on my face, I feel like you lovely girls are holding my hand and helping me walk through this issue which has caused me such deep sadness.  It has been so hard watching K suffer as she has.  We have no answers yet from physicians and the three medicines tried thus far have helped her pain so very little.  

 

I now have so many avenues to look into.  Tests to take and re-take, the elimination diet to try . . . I have felt completely helpless until now.  What a blessing you all are.

Share this post


Link to post
Share on other sites

I wish I knew of this years ago! You're daughter is lucky you are looking out for her. When I first tried an elimination diet my body was rejecting my medications and I had extreme fatigue - sleeping 12-14 hours a day, extreme joint pain where if I sat for 15 minutes my body joints would seize up and it was painful to move them, my feet and fingers were so swollen, I couldn't use my hands, I could only slightly bend my fingers, I couldn't open a handle with one hand or lift a plate, I had aches on my skin (flulike symptoms, I guess?), it was pretty bad. The reactions I had to my medication scared me pretty bad so I looked up natural alternatives and found out about Celiac and food intolerances and voila, amazing stuff happened. Definitely look up on elimination diets - the more hardcore the better. I bet in time she will be able to add more (except gluten, I would keep away from that forever). Honestly, four days on an elimation diet helped me more than any medication. Two years later, I have very minimal inflammation and no pain. Don't forget about supplements either - fish oil, vitamin D, MSM, probiotics - things for inflammation. I also got IgG testing done and kept away from the foods that came up as reactive to and anything I felt off about I kept away from those too. It takes awhile but it'll come together if you stick to it. I wish I could say gluten free is enough but right now, I don't think it is - keep away from any foods that may be inflammatory - GM foods, nightshades, dairy, gluten, legumes, alcohol, caffeine. Her story sounds like mine. I hope it works for her and I bet it will.

Share this post


Link to post
Share on other sites

Thank you, Janspell, (I actually fist pumped the air after reading what you wrote)!  I will most certainly go as hard core elimination as we can.  What have we got to lose?  After three months with daily pain, last night was the first night I saw sadness and defeat in her.  She cried many tears.  

 

But I had for her the responses and successes of all you who have answered my query to arm her with.  I am excited, I am no longer looking at a brick wall.  We are going to do this elimination diet together, we will further supplement, and look into natural alternatives for pain if need be.  

 

We are going to be beginning the diet tomorrow.  I haven't done more than five minutes of research on it yet.  Thank you for warning me about the affects it can have on the body.  It sounds like one's body is in battle while on this diet.  Now should we experience the same as you did, we will know that it is to be expected and normal.  The outcome has the potential to be AMAZING!

Share this post


Link to post
Share on other sites

Hi!  We are three days into the Elimination Diet now.  I have a question, our daughter is not feeling any better with her joint pain.  However, she is not feeling any worse either.  It was my belief that with the Elimination Diet, as your body rids itself of toxins, you would feel really crummy.  Is this not always the case?  

 

All we are eating is organic rice, the acceptable fruits (no strawberries and citrus) and vegetables (no nightshades).  She is also having organic chicken.  

 

Thanks!  

Share this post


Link to post
Share on other sites

Yes, Lyme was done recently for the second time.  I heard from K's family doctor, she has now had each of the following tests twice with all results coming back negative:  Sed Rate, Lyme, Strep, ANA, CRP, Arthritis.

 

She also had a low count of "3" for Celiac, her thyroid was fine and Vitamin D which was only marginally low.  

 

To me, a food allergy seems the only logical cause of her joint pains.  Her doctor said he wouldn't test for anything else because it has all been run on her.  

 

Thanks for asking!

Share this post


Link to post
Share on other sites

Just found that solanine in the nightshade family is a HUGE contributor to inflammation/joint pain.  I googled "solanine" and now know that we need to get rid of these items in our diet:  the usual nightshades, but in addition, some of our favorites for our juices which are blueberries and apples, both contain solanine.  

 

Here is a site and there are many others to look into:  http://www.nutrition411.com/component/k2/item/1446-solanine-is-it-linked-to-inflammation-and-other-conditions%C2'>

Share this post


Link to post
Share on other sites

×
×
  • Create New...