Is Celiac Disease The Culprit Of My Many Tendon Issues?

[boopis]

Hi everyone, this is my first post. The forums seem so supportive and I'm lucky to have you all here! 

 

The past few years have been really difficult for me... I am 23 years old now, and have developed over 10 chronic tendon injuries in the past 6 years. I was a classical pianist, I got chronic tendonitis in both of my forearms. I took a dancing class, and have pain in both of my knees. I recently developed terrible pain in my buttocks from sitting down studying, it hasn't gone away in 2 months. In those 2 months, I tried doing exercises and developed what feels like hip flexor tendonitis in both sides of my hips. I somehow developed shoulder tendon damage from exercise, and this week am feeling terrible pain in my wrist.

 

I went to many orthopedic specialists for each of these things, but nothing seems to make it better. PT doesn't work for me at all. Time off helps, but it never fully goes away and pain that was really bad might go away when a new injury replaces it. Any exercise I do instantly brings an old injury back. I just feel so lost. Having developed 5 injuries in the past 2 months, I started thinking maybe this is all related. 

 

While I plan on seeing a doctor about this, and asking why I'm developing these chronic injuries and seeing if they are linked, I wanted to ask anyone here if they had similar issues. I don't have any other symptoms, just a lot of musculoskeletal pain and I did read on a website that a symptom can be bad dandruff, which I have had my entire life. Does anyone have any advice about what I should talk to my doctor about? Can Celiac Disease perhaps be a culprit? Am I onto something?

 

Thank you so much, I really appreciate it!

 

[LauraTX]

Welcome to the forum!

When you see your doctor about all this, ask them if they can draw labs for the more common rheumatology factors to check for autoimmune conditions, and see if they will pull a few Celiac labs to potentially rule it out.   Also have them do standard screening bloodwork like CBC, CMP, thyroid, etc that they would do on a checkup if it hasn't been done recently.  Most autoimmune disorders are inflammatory diseases, so the fact that you have inflammation in so many unrelated spots on your body definitely strongly suggests that.   If your doctor is on the fence just say something like another doctor mentioning it being a possibility and you wanting to cover all your bases.

 

I have lupus as well as Celiac disease, and the person who initially found the lupus blood markers was an orthopedic surgeon... I was about to get a third surgery in a year, and he just wanted to check deep into it because he felt it was odd for a 25 year old to have carpal tunnel, cubital tunnel, and tendonitis all over. I was so glad he found that, and also a little unhappy the first doctor and many others did not.  Now I can fix the root issue.  PT just made things worse for me with all those problems and your case sounds a lot like mine.  Celiac disease is an autoimmune disease, and can cause all kinds of symptoms.  Inflamed joints and random aches and pains are definitely some of those, so better to check everything out so nothing is missed.  Many people have no gastrointestinal symptoms before their Celiac diagnosis, just other things, because it affects the whole body when untreated.

 

Here is a list of Celiac disease lab tests.  You have to be eating gluten regularly for them to be accurate, and the control test must be drawn to ensure no false negatives.  If you want to post your lab results here, we can help you figure out what is going on and if anything is missed, which is very common with Celiac diagnoses.  If any Celiac labs come up positive or borderline, definitely see a GI doctor for further testing and endoscopy before going on a gluten-free diet. So don't trial a gluten-free diet until all testing is done.

 

-tTG IgA and tTG IgG

-DGP IgA and DGP IgG

-EMA IgA 

-total serum IgA and IgG (control test to ensure tests are not false negatives)

-AGA IGA and AGA IgG - older and less reliable tests largely replaced by the DGP tests

-endoscopic biopsy - make sure at least 6 samples are taken as damage can be patchy

 

Here is a page explaining some of the autoimmune/lupus screening tests.  Your doctor will probably only do a couple and that is okay, but if any of them come up positive definitely see a rheumatologist.  You can have them draw more labs so you have more information at your first appointment, especially if there is a wait to get in.

Open Original Shared Link

 

Although having a bigger condition is no fun when you are in your 20's, I hope something is found so you can work on solutions to the root problem.  

[nvsmom]

Ditto everything Laura said.  That was great advice.

 

I agree that you might as well be tested but also get others issues looked at like rheumatology for lupus or rheumatoid arthritis, but also for things like hashimoto's and other AI diseases).

 

Celiac can cause a lot of pain too.  I had some very severe joint issues that began in my early 20's.  At the time I was still an undiagnosed celiac, and with hindsight, I also had Hashimoto's, so I'm not sure if my problem was entirely celiac disease (it has mostly gotten better in the last 3 gluten-free years) or something else.  I was pretty convinced I was getting lupus or just falling apart (initially).  My hands and wrists would not work sometimes, I had some severe back and sciatic issues, and some osteoarthritis type problems from sport injuries - only the hand and writs pain has gone.

 

Anyways, it's worth checking into.  Good luck.  I hope you find some answers.

[etbtbfs]

I had severe problems with muscle and connective tissue breakdown. The worst of these was diagnosed spinal degeneration. All this is due to the fact that celiac has reduced my ability to digest protein foods. The story is told by the TBP (Total Blood Protein) test. Normal range is 6.2-8.3 g/dl, but vigorous people usually read in the upper half of the range. My TBP was 6.1. I recovered by using a blend of 9 essential free amino acids, a powder, about 13 grams daily. Specifically, I use the NOW brand formula called Amino-9 Essentials. Supplemental amino acids, along with an aggressive T3+T4 supplementation program, did the trick.

[durrsakja]

In addition to autoimmune issues, another thing that can cause this is "floxing". Have you taken any antibiotics in the cipro / Levaquin family before the issues started?

[cyclinglady]

In addition to autoimmune issues, another thing that can cause this is "floxing". Have you taken any antibiotics in the cipro / Levaquin family before the issues started?

Great catch! This drug has so many horrible side effects that the FDA makes the manufacturer print a black box warning on the drug information leaflet. Spontaneous snapping tendons and other tendon issues are the scariest (at least for a runner like me!). I took this drug after surgery and had six months of a neuropathy in one foot. Imagine a live bee imbedded in your foot! This drug is on my "allergy" list. I will never take it again!

[ravenwoodglass]

Great catch! This drug has so many horrible side effects that the FDA makes the manufacturer print a black box warning on the drug information leaflet. Spontaneous snapping tendons and other tendon issues are the scariest (at least for a runner like me!). I took this drug after surgery and had six months of a neuropathy in one foot. Imagine a live bee imbedded in your foot! This drug is on my "allergy" list. I will never take it again!

I wonder if this could be the cause of my tendon issues. I know it is off topic but do you know if those issues could remain for years and then flare up with heavy use of the affected limbs? I had a horrible reaction to Levaquin. It made me hallucinate and basically shut down my pancreas (as near as I could tell). It took a couple months of pancreatic enzymes before that got back to normal but the tendons in my hands and lower legs just keep getting worse.  I have a physical job and getting tired of having to ace wrap my leg and open fingers using the other hand. If anyone knows anything that might help that would be great. 

 

I should note that I did report the reaction to the FDA and would advise anyone having an adverse reaction to a drug to also report.  Reporting helps get black box warning and can help in a decision to withdraw the drug from the market. 

[durrsakja]

I wonder if this could be the cause of my tendon issues. I know it is off topic but do you know if those issues could remain for years and then flare up with heavy use of the affected limbs? I had a horrible reaction to Levaquin. It made me hallucinate and basically shut down my pancreas (as near as I could tell). It took a couple months of pancreatic enzymes before that got back to normal but the tendons in my hands and lower legs just keep getting worse. I have a physical job and getting tired of having to ace wrap my leg and open fingers using the other hand. If anyone knows anything that might help that would be great.

I should note that I did report the reaction to the FDA and would advise anyone having an adverse reaction to a drug to also report. Reporting helps get black box warning and can help in a decision to withdraw the drug from the market.

It can definitely be a cause. I am sorry this happened to you. Please google "floxing" and you will read many stories of people injured by this drug. I have read supplementing with magnesium, especially Epsom salt baths and magnesium sprays, help people with tendon issues. I would strongly recommend reading up more on what to do to heal the damage caused to the tendons.

Edited to add: yes, there are people with issues lingering year after taking this drug. Sometimes issues surface months after and doctors fail to connect the dots. Connective tissue is damaged to a point that normal usage creates pain similar to an over usage injury. Speaking from experience here as I have been suffering from over six months!

[beadgirl]

Hi boopis, your situation sounds very similar to mine.

 

I am 26, and for past 5 years I have suffered chronic pain and recurring injuries all over my body, the worst of which had me unable to work, clean, cook or exercise for nearly 2 years due to pain in the hands/wrists/arms. I've quit 3 jobs due to these "injuries" and am debating whether my condition will enable me to work in the future. I've had recurring pain/injuries in my hands/wrist/arms/shoulders/neck (as well as headaches) and hips/lower back/ankles/etc. I regularly pull muscles all over the place, along with migrating pain and awful nerve symptoms.

 

I have seen a rheumatologist, orthopaedic surgeon, as well as numerous physiotherapists who have diagnosed me with everything from tendonitis to carpal tunnel syndrome and fibromyalgia. I have had MRIs, blood tests and nerve conduction studies.

 

None of the diagnoses have been correct and all of my tests were normal.

 

I am seeing a neurologist later this year, and although I'm afraid of some horrible (but unlikely) disease, I think I know the reason I have this condition.

 

For me, it's stress. Prior to the onset of this chronic pain/injuries, I had depression and have had chronic anxiety for nearly a decade. I started keeping note of when my pain, injuries or nerve symptoms would arise and discovered that it always followed stress - often something extremely minor. Especially the stress from having this condition! It's like my body CANNOT deal with any form of stress, not emotional or physical. I couldn't even enjoy the beach the other week because gasping from the cold waves felt like I was tearing my diaphragm! I believe this is what long-term chronic anxiety has done to me.

 

I am also in the middle of searching for a celiac diagnosis, which I believe IS related to my anxiety, which has caused me to develop this chronic pain condition. Hope you can find your answer too - and have you tried massage?

[sweetsailing]

Yes, I absolutely have had the same issues.  2 - 3 years of stuff breaking down.  Severely torn glute, elbow tendonitis, knee tendonitis, neck and back issues, torn scalene muscle in my shoulder, torn calf muscle, torn proximal hamstring, etc...the list goes on and on.  Most of these injuries were from very little cause or effort (i.e. 10 minutes on treadmill).  It was clearly obvious that normal people do not get injured doing the things I was doing.  I was tested for Lupus, Rheumatoid arthritis, thyroid issues, Lyme disease, etc.  Everything that you can think of that may cause such issues.  It wasn't until we centered on celiac disease and I was strictly gluten free that these issues improved.  My nutritionist told me that as far as your tissues are concerned, gluten stays in your system for 6 months even after you go gluten free.  It held true for me that my issues didn't start to improve until I was gluten free for 6 months.  Improvement started with no new injuries, still had all the existing issues to deal with. It has been a long battle with a great sport chiropractor who specializes in soft tissue injuries and a great personal trainer.  I am now about 1.5 years since I eliminated gluten and I have made great strides and am working out on a regular basis and my injury areas are slowly fading away.  The hardest part was working out in the beginning when everything in my body and mind was telling me not to.  I focus on adequate protein intake, vitamin supplements and drinking enough water.  It was shocking to me how the impact of adequate water intake can play into muscle pain.

 

At it's worst, I felt like my body was just breaking down muscle and tissue in order to sustain itself. I figure this was going on for many years, so it's not unrealistic to think that it will take a few years of diligent work to reverse everything. 

[Fenrir]

Before I was diagnosed I had chronic joint/tendon issues. There were times the tendons in my knees were so inflamed that I could literally not get out of my car. I was limping around all the time, it was pretty horrible. Luckily, after about a month of being gluten free that probably went away for the most part. 

 

Not sure if gluten is the cause of your problems but you should certainly proceed as suggested above

[beadgirl]

Hmm, now I'm thinking mine might be celiac too - guess my results will tell.

 

Hope you find some answers!

[boopis]

Thank you everyone for the incredibly helpful info. Here's an update on my situation:

 

I got bloodwork done by a rheumatologist. He found no celiacs disease and none of the common AI diseases. I somehow developed new pain in my hand, which adds to the ever-growing list of problems. Anyone have advice on where to go from here? I should say, he did find that I had very low vitamin D levels (12 ng/ml), but I don't know how relevant that is. Thank you in advance everyone!!

[ravenwoodglass]

Thank you everyone for the incredibly helpful info. Here's an update on my situation:

 

I got bloodwork done by a rheumatologist. He found no celiacs disease and none of the common AI diseases. I somehow developed new pain in my hand, which adds to the ever-growing list of problems. Anyone have advice on where to go from here? I should say, he did find that I had very low vitamin D levels (12 ng/ml), but I don't know how relevant that is. Thank you in advance everyone!!

Could you tell us what celiac tests he did and what the results are? Sometimes doctors don't do a full panel and that can be a problem for us. Some folks will only be positive on one test and some doctors don't run the total IGA with the panel. Being IGA deficient can cause a false negative on testing. 

[boopis]

Could you tell us what celiac tests he did and what the results are? Sometimes doctors don't do a full panel and that can be a problem for us. Some folks will only be positive on one test and some doctors don't run the total IGA with the panel. Being IGA deficient can cause a false negative on testing. 

This is what the blood panel says:

IgA: 4 units

IgG: 3 units

(tTG) IgA: <2 U/mL

(tTG) IgG: <2 U/mL

Endosymial Antibody IgA: neg

Immunoglobulin A, Qn, Serum: 118 mg/dL

 

Is my low vitamin D an indicator of anything? (12 ng/mL)