Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Pain Afterwards


GlutenFreeAustinite

Recommended Posts

GlutenFreeAustinite Contributor

Hi all,

So I've had quite an intense couple of years in terms of destroying myself physically. I was a year-round swimmer, practicing 5 days a week for an hour and a half each day, and I injured my shoulder. Nine months of physical therapy concurrent with training, and no progress. So I quite swimming, and the shoulder problems only got worse. My shoulder popped almost constantly, and hurt all the time. This fall, I underwent surgery on that shoulder and was diagnosed with chronic subluxation (basically my shoulder popped in and out of socket dozens of times a day). Now I'm in physical therapy and having both shoulders treated because the other one pops constantly, much as the other did. My right shoulder's now doing the popping thing again so I have no clue what's going on there.

Long story short, I'm obviously not getting much exercise because everything hurts my shoulders. The other day, my mom brought me to the arthritis water aerobics class at the YMCA, which she said has really helped her arthritis (basically, everyone in my family has or has had arthritis. Grandmother had ankylosing spondylitis, Mom's got osteoarthritis, Dad has gout, Aunt has really bad arthritis in her knee). So I went and was being really careful of my shoulders, etc. After class, my hips started to hurt, and by the end of the day, I was having problems walking. This was yesterday, and now, even sitting here, I'm in pain. it actually feels better when I walk, but I can't walk fast and I can't spread my legs to stretch them.

I'm out of shape, to some extent, but I'm not that far out of shape. My mom is more out of shape than me, and she had absolutely no pain. I'm also only just turned 18. I haven't been glutened recently (last time was a few weeks ago though) and I don't think it's that, so I'm wondering if it's some added side effect of being gluten intolerant, or if it could be something else.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



rosetapper23 Explorer

Some of us with celiac suffer from musculoskeletal problems, such as tendonitis, ligament tears, cartilage tears, and muscle, bone, and joint pain. I was born with Rickets and connective tissue problems that plagued me throughout my childhood and adulthood, but I wasn't diagnosed with celiac until I was 47. When I was 18, my muscles, tendons, and ligaments began to give me trouble even though I was a regular runner. I suffered with terrible tendonitis in my knees and was almost completely disabled before I demanded to see a physical therapist when I was 22 (my doctors weren't convinced anything was wrong with me because I was so physically active and young). The physical therapist told me that babies born with my muscle, bone, and connective tissue problems usually begin physical therapy shortly after birth, and she showed me a little baby in the next room having her legs stretched--she was screaming in pain, but the rigidity of her muscles required this stretching. After three months of physical therapy, my knees were better...but then my hips developed tendonitis because my quadriceps had been built up but not my psoas muscles in my buttocks, so the muscles in my hips became unbalanced. After months of physical therapy on my hips, all was well....until after I had my first baby, when my shoulders needed physical therapy. I think you get the picture--our muscles and joints can be affected by gluten. It can take a while to get better, but, in the interim, you may have to do some reading on balancing muscles. In my case, it was determined that some of my muscles were inherently too weak while others were inherently too strong. Actually, some of my muscles are downright rigid so that I've experienced a number of tendon and ligament injuries. Once you figure out how to balance your muscles (which results in healthy tendons, ligaments, and joints), you'll know which movements NOT to make to upset the wagon.

Let me give you an example: There are many muscles in the shoulders, as it is a complex joint. It's possible that some of the muscles are, in fact, inherently weak while others are very strong. The stronger muscles then pull at the joint so that the weaker muscles start to grab onto the tendons and ligaments for support. Tendons and ligaments were not meant to take that type of stress, so they begin to rupture and tear and become inflamed. My femurs used to pop in and out of my hip joints during the height of the inflammation in my hips. You should examine each muscle "set" individually, and you may be able to identify the weak and overly strong muscle in each set. The idea is to strengthen the weak muscles and stretch the overly tight muscles. Usually, those muscles are as follows: The quadriceps can be weak while the hamstrings can be overly tight; the triceps can be weak while the biceps can be overly tight; and the psoas muscle, if too weak, can be pulled over the hip joint if the quadriceps become too tight. Therefore, if you strengthen your quadriceps, you MUST also strengthen your psoas muscle. It sounds as though your hamstrings, and possibly your quadriceps, are extremely tight from years of swimming--you might consider taking yoga in order to work on gaining more flexibility. Yoga can also help strengthen the weaker muscles and tends to "balance" muscles overall.

Muscles and connective tissues are very complex, so you'll really need to read up on them. Doctors seem to know practically nothing about how they work together in a healthy system, so, unless you find a truly wonderful physical therapist who understands that it is more than one muscle group that is involved with your disability (and not just a shoulder or a hip), you'll need to be your own advocate and experiment with strengthening and stretching exercises.

If you would like some pointers for stabilizing your hip joints, just send me a personal message, and I'll describe the physical therapy elements to you.

  • 3 weeks later...
GlutenFreeAustinite Contributor

Hi Rosetapper...I've been off the forum for a couple of weeks, so I apologize for the extended delay.

I appreciate your detailed response. I definitely believe gluten can affect joints (I'm currently in therapy for both of my shoulders, one as a preventative measure and one as rehab from surgery in September) and I appreciate all your information. If you have any specific information, I would LOVE if you could message me some, because since writing this post, my hip and back pain has gotten worse.

NorthernElf Enthusiast

FWIW, you might want to follow up with a rheumatologist if this continues. I'm very active (42) and have psoriatic arthritis....took awhile to figure out. I chalked it up to sports injuries and then when it got worse had to seek answers.

Don't go to no exercise at all - try walking at least. Activity is important for joint mobility and strength. If it hurts, avoid it. Swimming as much as you were was probably too much of the same activity. Cross trainig is important to avoid overuse of any particular joint. Swimming can be heavy shoulder use. Heat & gently stretch. You don't want to lose your range of motion.

I have been gluten-free for 10 years - my joint issues are not gluten related. Back when this all started I did have some achiness that I attributed to gluten but I eat very carefully these days. Being active is crucial, just switch it up a lot.

dilettantesteph Collaborator

My joint pain is gluten related, I think. It was quite bad before diagnosis, went away after gluten free, and comes back when glutened. I was very active with ballet and skiing and had to quit due to pain. I am now active again. I had swollen joints, such that I could no longer fit any rings on my fingers. My back was constantly out, and knees, ankles, wrists and elbows always hurt. I had trouble supporting my babies heads to nurse due to wrist pain. Since diagnosis and gluten free I was able to train and do a mini marathon and have taken a few ballet classes.

It could be gluten, or not in your case.

GFinDC Veteran

Soy and nightshades cause me joint pain. So, even if it isn't gluten, maybe it is time to look at other foods that could cause issues. Low thyroid hormone can cause joint pain also.

GlutenFreeAustinite Contributor

I am definitely keeping active...the surgery kind of laid me low for a couple of months (especially during the weeks I had to wear a gigantic brace), and I still haven't been given the okay for over-the-head movements, and I'm not strong enough to do much else with it. But my mom brought me to her water aerobics class for people with arthritis, and that seems to have "woken up" whatever it is. I have eliminated soy from my diet already, but nothing else.

I actually spoke to my physical therapist about the pain today, and he watched me move, and was immediately concerned because as I bent over, my back "caught." My body moved correctly, but the muscles within the movement weren't too happy. If I understood him correctly, my spine has essentially forgotten how to function properly and is very tight. He used the word "tone" but I'm not sure if he's referring to shape/fitness of the muscles or not. He doesn't know what's causing it, but he's willing to help me manage pain. :)


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



BarryC Collaborator

Great posts all, especially rosetapper. I am still amazed that I can work out, go for a skate, etc and not spend the next day recuperating. This is real helpfull especially for those that need to exercise to lose weight.

rosetapper23 Explorer

GlutenFreeAustinite,

Please send me a personal message if you're interested in knowing specific exercises. It sounds to me, from your description, that your hamstrings and quads are too tight, and your psoas muscles are too weak.

Also, in the interim, I would HIGHLY recommend that you take a combination of Omega 6's and 3's that should help with your muscle pain. A proper ratio of Omega 6's and 3's will oxygenate your cells so that your muscles will not feel so fatigued and sore. Simply mix 1/2 teaspoon of organic flaxseed oil and 3/4 teaspoon of safflower oil into a smoothie or juice twice a day. You should notice a difference immediately. You should also make sure that you take this ratio prior to doing any type of physical exercise. A number of us on this forum can attest to how much this recipe has helped with muscle pain.

rosetapper23 Explorer

It suddenly hit me this morning when I was preparing my usual smoothie that I had completely forgotten about a possible cause of your symptoms: low zinc, manganese, and/or silicon. My connective tissue went crazy two years ago after I got glutened so that my tendons became floppy, causing pain and disability. No one could tell me what was wrong, even though I saw numerous doctors and specialists. In the end, I did my own research and discovered that I had symptoms indicative of deficiencies in these particular minerals. I began taking the chelated versions of zinc and manganese (it's important that they be in chelated form) and a product called BioSil, which contains silicon. All of my symptoms disappeared within a week.

I suspect that a deficiency in manganese just might be the culprit in your case, so you might try taking chelated Manganese to see if you feel better. If not, you might then consider trying the zinc and BioSil. BioSil has helped quite a few of us here on the Forum. It can't hurt to try....but it might continue hurting if you don't.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - cristiana replied to Scatterbrain's topic in Sports and Fitness
      5

      Feel like I’m starting over

    2. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      8

      My only proof

    3. - Wheatwacked replied to Jmartes71's topic in Coping with Celiac Disease
      8

      Related issues

    4. - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      8

      My only proof


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,297
    • Most Online (within 30 mins)
      7,748

    Pam PA
    Newest Member
    Pam PA
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      Hi @Scatterbrain Thank you for your reply.   Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct.   Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two, following my diagnosis - I pinned everything on coeliac disease, but it turns out I wasn't always right!  Dizziness, lightheaded - I was eventually diagnosed with cervical dizziness (worth googling, could be your issue too, also if you have neck pain?)  A few months after diagnosis I put my neck out slightly carrying my seven-year-old above my head, and never assigned any relevance to it as the pain at the time was severe but so short-lived that I'd forgotten the connection. Jaw pain - stress. Tinnitus - I think stress, but perhaps exacerbated by iron/vitamin deficiencies. Painful ribs and sacroiliac joints - no idea, bloating made the pain worse. It got really bad but then got better. Irregular heart rate - could be a coincidence but my sister (not a coeliac) and I both developed this temporarily after our second Astra Zeneca covid jabs.   Subsequent Pfizer jabs didn't affect us. Brain fog - a big thing for people with certain autoimmune issues but in my case I think possibly worse when my iron or B12 are low, but I have no proof of this. Insomnia - stress, menopause. So basically, it isn't always gluten.  It might be worth having your vitamins and mineral levels checked, and if you have deficiencies speak to your Dr about how better to address them?    
    • knitty kitty
      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy.  Benfotiamine and other forms of Thiamine do not bother me at all.  There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes.  The sulfur in thiamine is in a ring which does not trigger sulfa allergy like sulfites in a chain found in pharmaceuticals.  Doctors are not given sufficient education in nutrition (nor chemistry in this case).  I studied Nutrition before earning a degree in Microbiology.  I wanted to know what vitamins were doing inside the body.   Thiamine is safe and nontoxic even in high doses.   Not feeling well after starting Benfotiamine is normal.  It's called the "thiamine paradox" and is equivalent to an engine backfiring if it's not been cranked up for a while.  Mine went away in about three days.  I took a B Complex, magnesium and added molybdenum for a few weeks. It's important to add a B Complex with all eight essential B vitamins. Supplementing just one B vitamin can cause lows in some of the others and result in feeling worse, too.  Celiac Disease causes malabsorption of all the B vitamins, not just thiamine.  You need all eight.  Thiamine forms including Benfotiamine interact with each of the other B vitamins in some way.  It's important to add a magnesium glycinate or chelate supplement as well.  Forms of Thiamine including Benfotiamine need magnesium to make those life sustaining enzymes.  (Don't use magnesium oxide.  It's not absorbed well.  It pulls water into the intestines and is used to relieve constipation.)   Molybdenum is a trace mineral that helps the body utilize forms of Thiamine.   Molybdenum supplements are available over the counter.  It's not unusual to be low in molybdenum if low in thiamine.   I do hope you will add the necessary supplements and try Benfotiamine again. Science-y Explanation of Thiamine Paradox: https://hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/#google_vignette
    • Wheatwacked
      Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped.  It sounds more like you are suffering from malnutrition.  Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here.  Malnutrition can cause SIBO, and SIBO can worsen malnutrition. Another possibility is side effects from any medication that are taking.  I was on Metformin 3 months before it turned me into a zombi.  I had crippling side effects from most of the BP meds tried on me, and Losartan has many of the side effects on me from my pre gluten free days. Because you have been gluten free, you can test and talk until you are blue in the face but all of your tests will be negative.  Without gluten, you will not create the antigen against gluten, no antigens to gluten, so no small intestine damage from the antigens.  You will need to do a gluten challange to test positive if you need an official diagnosis, and even then, no guaranty: 10 g of gluten per day for 6 weeks! Then a full panel of Celiac tests and biopsy. At a minimum consider vitamin D, Liquid Iodine (unless you have dermatitis herpetiformis and iodine exasperates the rash), and Liquid Geritol. Push for vitamin D testing and a consult with a nutritionist experienced with Celiack Disease.  Most blood tests don't indicate nutritional deficiencies.  Your thyroid tests can be perfect, yet not indicate iodine deficiency for example.  Thiamine   test fine, but not pick up on beriberi.  Vegans are often B12 deficient because meat, fish, poultry, eggs, and dairy are the primary souces of B12. Here is what I take daily.  10,000 IU vitamin D3 750 mg g a b a [   ] 200 mg CoQ10 [   ] 100 mg DHEA [   ] 250 mg thiamine B1 [   ] 100 mg of B2 [   ] 500 mg B5 pantothenic acid [   ] 100 mg B6 [   ] 1000 micrograms B12 n [   ] 500 mg vitamin c [   ] 500 mg taurine [   ] 200 mg selenium   
    • NanceK
      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well.  I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given this info before taking more of it. 
    • Wheatwacked
      Hello @Scatterbrain, Are you getting enough vitamins and minerals.  Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D.   By the way you should get your mom checked for celiac disease.  You got it from your mom or dad.  Some studies show that following a gluten-free diet can stabilize or improve symptoms of dementia.  I know that for the 63 years I was eating gluten I got dumber and dumber until I started GFD and vitamin replenishment and it began to reverse.  Thiamine can get used up in a week or two.  Symptoms can come and go with daily diet.  Symptoms of beriberi due to Thiamine deficiency.   Difficulty walking. Loss of feeling (sensation) in hands and feet. Loss of muscle function or paralysis of the lower legs. Mental confusion. Pain. Speech difficulties. Strange eye movements (nystagmus) Tingling. Any change in medications? Last March I had corotid artery surgery (90 % blockage), and I started taking Losartan for blood pressure, added to the Clonidine I was taking already.  I was not recovering well and many of my pre gluten free symptoms were back  I was getting worse.  At first I thought it was caused a reaction to the anesthesia from the surgery, but that should have improved after two weeks.  Doctor thought I was just being a wimp. After three months I talked to my doctor about a break from the Losartan to see if it was causing it. It had not made any difference in my bp.  Except for clonindine, all of the previous bp meds tried had not worked to lower bp and had crippling side effects. One, I could not stand up straight; one wobbly knees, another spayed feet.  Inguinal hernia from the Lisinopril cough.  Had I contiued on those, I was destined for a wheelchair or walker. She said the symptoms were not from Losartan so I continued taking it.  Two weeks later I did not have the strength in hips and thighs to get up from sitting on the floor (Help, I can't get up😨).  I stopped AMA (not recommended).  Without the Losartan, a) bp did not change, after the 72 hour withdrawal from Losartanon, on clonidine only and b) symptoms started going away.  Improvement started in 72 hours.  After six weeks they were gone and I am getting better.  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.