Horrible Joint/ligaments And Recovery?

[Chevelle]

In a nutshell:

I grew up always craving bread and anything including flour, cheese, and tomatoes - my meals consisted of bread. I literally did not eat my veggies until 2 years ago. I was EXTREMELY heavy on sports (gymnastics, track), and pretty much grew up with either fatique or joint pain. I was once tested for anemia because I had almost no energy, but the iron levels were ok. (I was living on Grape-Nuts and homemade yogurt) My legs were shot in 7-8th grade, to the point were I could no longer run. I tried giving myself a number of years off, but, to this day (now one year past graduation at 19 1/2 years old), running is extremely hard on my joints. Even squatting down takes quite a bit of effort, as it can be quite painful. I started riding horses 5 years ago. Back and SI pain came and went. Over the course of the last year, I was riding up to 8 hours a day, the rest of it filled with heavy barn chores. All of my joints, from my wrists to shoulders went by the wayside. I was getting shooting nerves quite frequently from my shoulders, as well as the sciatica. It felt like all of my ligaments were inflamed and weak. Crepitus and joint snapping painfully affected every joint, even the TMJ. I have always noticed that I do not heal well after injuries, especially ones afflicted to the joints themselves. My hair was of very poor quality - dull, brittle, a light brown tinged with a greyish-green hue in winter. Until recently, I averaged maybe 2 periods a year. Terrible skin, nails, and facial complexion. Eyesight frequently changed. My vision was/is blurry, and one pair of glasses was sometimes too strong, sometimes just right. I often got floaters, and saw double of everything in the morning. I was always squinting, trying to get things to focus. I never felt 'healthy'. The only thing that really 'worked' right were the muscles - they actually tend to develop very easily and retain memory. When riding, I frequently got picked on because my muscles appeared flexed, even when relaxed. The Massage Therapists I saw all remarked that I have very high tenacity, as well as a very high pain tolerance (which I can attest to - I often worry because thing that should hurt, often don't. And when I do feel severe pain, part of me is actually numb. I have been known to laugh when I get hurt, even though my body says that it is in a lot of pain - does this make sense? It is like a certain type of pain receptor is missing. I feel the pain, but it doesn't really hurt.

Anyway - I went to multiple doctors, had multiple x-rays and blood tests done (but not the correct ones, as I now realize). None of them even mentioned that food might be the culprit. Now, after restrictions and doing a few 'challenges', I know gluten, casein, chocolate, coffee, and some forms of sugar bother me (haven't quite figured out the specifics). Haven't tried a 'nightshade' challenge yet.

Now for the question: If a celiac grew up on abnormally high amounts of wheat, engaged in high levels of physical activities, really pushing the limit, what can be expected for recovery? Years? Decades? After 4 months of not doing anything physical (because I simply couldn't - stretching proved to be damaging to my joints because of the load they take), I can finally stand for an hour, possibly more, depending on the day. This is a big step forward because I was stuck in bed for a number of months because it felt like my back was collapsing onto itself if I stood up) Any physical stress on my body (opening doors, holding objects, etc) is still painful. Now that I am gluten free, my vision has improved, I get the menses more regularly, the crepitus and snapping has softened, and my brain feels a little sharper. How long should I expect it to take for me to 'get better'?

[mushroom]

How long should I expect it to take for me to 'get better'?

That's a very difficult question, a bit like asking "How big is big?" It is something that is very different for each of us--we all recover at our own rate. I, too, was a breadaholic all my life and I just discovered 7 months ago that I shouldn't eat it (I am 68). I guess I am lucky that I do not have more problems than I do.

Good luck on your journey to better health.

[Aleshia]

I'm 30 and just figuring out what is wrong with me. I know the feeling of my back gonna collapse... I've lost 2 inches of height and sometimes it feels like my ribs and my hips are gonna hit each other! I love horse riding but don't do it much because of my knee joints, they get stuck in one position and then changing that position is soooo painful!

I was just wondering, have you ever felt like your finger breaks just from moving something? like turning on the car? pusing the vaccuum? moving a chair? etc etc etc... my fingers do this thing where I hear an audible "snap" and then it swells up and bruises and it burns and stings really bad for about an hour and then is completely normal again.... its very strange! just wondering if you (or anyone else out there!?) get this!

not sure how long it will take to get better, sorry, I noticed a big difference in a lot of things after a month or so but no difference in other things... it is definitely great when your brain isn't fogged anymore though!

[dollamasgetceliac?]

And when I do feel severe pain, part of me is actually numb. I have been known to laugh when I get hurt, even though my body says that it is in a lot of pain - does this make sense? It is like a certain type of pain receptor is missing. I feel the pain, but it doesn't really hurt.

Hi Chevelle;

I used to be a Ballerina, studied Ballet professionaly for many years, horse backriding , Karate etc... Now I think that what Dancers have is sort of the abrasion of the joints.

What really shocked me about your situation is that what you said about pain: I think you must see a Good Neurologist or a pain specialist. I use to think that pain was normal , all my friends had it , and if you were a good sport than that is what you have. Untill the last 6 or years ago when my problems started read my signature. I did not add joint pain and swelling in the hands and feet and backpain and knee pain etc...

My pain was and sometimes is so bad that I am doubeled over.

Go to the mayo clinic dotcom and run a symptom checker, you might have to run the symptom checker a few times with seperate symptoms( OBGYN) and say Joint pain try the symptom checker in differant ways. Then see what the computer comes up with, have an OBGYN check for the reason that you still are having a few menstrual periods rather than being regular?

Also I recomend Dr. Peter Green's book Ciliac disease a hidden Epidemic.

Best wishes

[NorthernElf]

Hey fellow sports enthusiast...

I know where you are coming from - I'm a big runner and fitness instructor, I am active pretty much every day. Celiacs hit me about 4-5 years ago and I was tired & sore A LOT. I had hip pain, ankle pain, wrist pain, etc. I got pins & needles down my arm, one leg, and sometimes even into my forehead (scary!). I saw my doc often and she could do nothing (I also had sinus issues and a bit of blurry vision in one eye). I researched the 'net a lot and got tested (wrongly - doesn't work if you are already gluten-free). Anyway, things have settled down and my pains are now usually only from overdoing it. It did take a while. I was in to the doc the other day (haven't seen her for awhile) and she asked about my aches and I told her that the gluten free diet made a HUGE difference. She was originally skeptical that I could be celiac because I am healthy & active and have some muscle - I'm not the classic wasting away person. Hmm, since avoiding gluten I have met celiacs of all body shapes & sizes ! Anyway, I also told her there was no way I would do a gluten challenge like we had discussed about a year or so ago - my sensitivity to gluten is huge now, I wouldn't make it through the first day !!! I think she believes me now...but I dont' really care because I know what I have to do.

Do you take a B vitamin supplement ? It's common to be deficient in this.

Your lack of regular periods is a warning sign that you may be overdoing it - not eating enough for your activity (your body is stressed). As much as we women don't mind missing periods, it can be a sign that your bones are getting damaged from a hormonal unbalance. We are also already at higher risk for osteoporosis. This is definitely something to get checked out.

I understand your high pain tolerance too. Us sports nuts tend to push through and only seek help when things get really bad because heck, we're sore a lot from the activity anyway. The older I get (I've got 20 years on you!) the more I understand how I need to work WITH my body and treat it well. To me, that means a healthy diet, adequate rest, and a gradual building up of activity...most of the time !

[lynnn724]

obviously individual response will vary...i was diagnosed with celiac at age 42, had been having regular physio for shoulder, back, wrist pain....6 months into strict gluten-free diet, i was pain free...started back to the gym, doing medium weight at max # reps....strength is back to what i was at 25...hope that is helpful

[lizard00]

It is definitely individualized as to the response time. I am about 6 1/2 months in and feel almost back to myself. I had fatigue-like I could sleep 12 hours, wake up and still go right back to sleep; nausea, headaches, and some joint/muscle pain that I didn't equate to Celiac, but looking back it has gotten better. I averaged about 4 periods a year, and I am not an athlete. (nor am I overweight) The headaches went away immediately, the naseau took a little longer, but the fatigue held on. I felt better in the morning, but still needed a nap. And almost immediately my periods got more regular. So far this year, I have had 5. I started taking B12 for energy and that really helped. Now I take as needed, but my fatigue has really improved. I understand about your victory of standing for an hour... there was a celebration at our house the first week of no afternoon napping. Take the victories when you get them and celebrate.

I truly believe that I didn't get to where I was overnight, so I wasn't going to get better overnight. Stick with it, and as long as your symptoms don't get worse, don't stress over it. That will only make matters worse. Improvement is gradual, but it will get better!! But this is one time you can't push it. It's hard to accept that, believe me. But once I did, my recovery seemed to speed up.

[dollamasgetceliac?]

I truly mis being active, to think about the fact that I was able to do so many things and now I simply can't. I think that I have to forget about my expectation of myself and the expectation of others of me. That is hard to deal with. i feel as though everybody is pushing me. When people ask me" How Are You? " it is a loaded question. It is obviouse that I am Better but not totally well. It was 7 years ago that I was able to Excersize above the average women my age, I looked better I felt better, and then it just went wrong. Now I try to walk every day, and if I don't then I feel guilty . I am having trouble with paising myself. I usually overdo it , that I think is common for someone who in their mind can do so much more and has been trained to go to the extremes.

The Dr's usually send me to a physiotherapist that usually puts me in so much pain that I hate to go back. So I then rest too much and my muscle tone goes down the drain.

I really believe that Athletes need to see Physical therapists whom are specialized in working with Celiacs. Because Your mind set is totally differant from someone who never really was trained to work hard physically.

So I am just going to go with the new me, and take it one day at a time. And I don't think I will be running the Marathon today