<<Disclaimer: Verify this information before applying it to your situation.>> In reponse to my list: I am 59 and am having back and neck problems caused by Degenerative Disc Disease. I have lost cartilage in the knees (have had both knees replaced) and now in the wrists, causing pain and bone spurs as bone rubs on bone. I have been diagnosed for 2 years, but the diagnosis took a long time-probably had CD for years. I am wondering if this long span of time without diagnosis has caused damage and contributed to these two conditions. Does anyone else have a similar situation? Madelyn VA I really appreciated your sharing your information with me...thought instead of a brief summary, you might benefit as I have, by reading all the responses. Looks like late diagnosis does cause damage that shows up to make your body "age" internally more than the average.....But I am a better person for going on the diet-and I'm still grateful for the diagnosis. Thanks again for sharing! (This will be divided in several summaries!) Madelyn The answer to your question is - yes, long undiagnosed celiac disease can lead to degenerative disease of the cartilaginous parts of the body. I posed this question to the doctor who diagnosed my celiac disease and he agrees that this is highly possible. I have three titanium screws holding my back together after two discs dried out and collapsed. I have suffered with back problems since the age of 12. At 30, I ruptured two discs, at forty I ruptured two more and then four years later the areas of previous disc removal collapsed. I know this is not much reassurance but I am a living example of how the body robs itself in other areas when it does not get the nutrition it needs. I have the same problem. Also have been diagnosed with Osteopenia (just shy of osteoporosis). I am 49 and was diagnosed a year and a half ago. I have had stomach problems since a teen. My physician feels that the damage was caused by being an undiagnosed Celiac for so many years. Bone can improve with calcium absorption, but cartilage never returns. I have been diagnosed since December 1998. I have similar conditions; I have had one knee replaced (last May) and I also have spurs in many of my wrist and hand bones. The orthopedic surgeon who did my knee didn't seem to know much about celiac at all, but the hand doc I went to, when I told her I had celiac, said that all this degeneration could have come from all the years of undiagnosed celiac. I am facing three hand surgeries at this point to repair some of the damage. By the way, I am 50. Yes! I am 40, diagnosed last March, but had CD for years. I have complete and total degeneration in all of the disks of my neck and several in my back. My chriopractor could not begin to understand why a healthy young woman could have these problems, but now we know why. Also, about 6 months ago, I began having the strangest pains in both hands. One hand showed a secondary "bump" right next to my wrist bone bump, and it killed me to even use that hand. The other hand got a "trigger thumb" where my thumb would go straight in the middle of the night every time I went to sleep. Both problems were solved (for now anyway) by going to a rheumatologist and getting one steroid injection in each location - in fact - everything cleared up over night. He did give me a script for hand therapy (hot wax therapy, etc.) once a week for 6 weeks, but I never bothered. I figured I'll go through that bother if it comes back. He did say that many times, this type of situation never comes back after the cortizone shots, and sometimes it does. We'll see. I wondered after the fact if cortizone was safe and gf and never did find out. Best of luck to you. Please let me know if you find any way to build cartiledge back aside from Glucosamine/Chondroitin, which I use now on a daily basis. I would think the answer to your question is YES. I am in my sixties and was diagnosed only a few months ago. I have had disc degeneration for many years. I know that this is contributed to CD and not being diagnosed at a young age. I have a daughter that also has disc generation and deals with a lot of pain. I've had 3 low back surgeries (last one a fusion) for degenerative disks (herniated disks - same thing I believe.) Last surgery was 1990 - less than a year ago was told my neck vertebrae are spontaneously fusing - 3 already almost solid bone - can still turn my head and all. But went to orthopedic surgeon who said the numbness in my hands and fingers was due to degenerative disease of neck vertebrae which is related to what happened in low back and had to be surgically fused. She also said 'carpal tunnel' syndrome (which she said before she saw my neck x-rays) and suggested try 200 mg B6 daily - which, believe it or not, helped. I still take it and when I forget to take it too many times in a row, the numbness gets worse. Also when I carry something heavy or twist my neck, I get the numbness at night mostly and also a shock-like feeling in my hands/fingers. It affects both hands and sometimes the last 3 fingers, sometimes the thumb and first finger - again, mostly at night and I don't!! sleep on my arm so it falls asleep! Since the back surgeries, I sleep mostly on my back with a pillow under my knees. Had celiac-related problems all my life - most serious ones affecting nervous system, migraines, unexplained attacks of weakness, "partial paralysis" and numbess (more serious than just fingers) and blindness. (plus GI problems and almost constant bladder infections) They said I had MS when I was 19 - am 54 now - my mother died last spring after a very lengthy neuromuscular illness which gradually left her unable to walk, move arms or legs, talk, finally couldn't swallow anything - couldn't hold herself upright in a chair. It was the worst nightmare I've experienced to see her get worse and worse over 10 years, nothing anyone could do, 'til she died. Doctors (22 of them!) never knew exactly what she had. After she died I had genetic testing for celiac (was g-f for over 10 years and not ever eating gluten again for the sake of a test!) So found out that BOTH my parents were probably celiac - I have 2 identical genes HLA-DQ 0201, 0201. I long suspected my whole family must be celiac! (I know they say that's impossible -- come meet my family! migraines, osteoporosis, lactose intolerant, attention deficit dis., low back problems w. surgeries, rheumatoid arthritis, irritable bowel, colitis, thyroid disease ..... I could go on and on ---) My aunt was diagnosed celiac but besides her, I'm the only one who wants to hear about celiac. My aunt doesn't follow the diet either (is pig-headedness a symptom? they all got that too") But to answer your post - we all seem to have some form of spinal deformities (oh, yeah, I was just diagnosed w. scoliosis - never had it as a child! my son and my brother both have 1 leg shorter than the other and back pain ---) Yes, the gluten-intolerance in some people can cause life-long problems with bone and nervous system damage - much of it irreversible if ignored until we're in our 30's, 40's and beyond. I chair a support group here and many of our members have back problems and arthritis: the price we pay for late diagnosis and years of increasing damage. Someday I will have to have surgery to prevent total arm and hand numbness and paralysis (per the orthopod --) My cousins already have had the neck surgery and many relatives have had back surgery. I'm holding off as long as I can. I've also found that the longer some of us go before eliminating gluten, the more allergies develop - discovering now that I can't eat any dairy (not just no-lactose) and yeast is causing problems too. I'm scared to death for my 25 yr old son who won't take this seriously - he has migraines, back pain, 'short leg', intermittent diarrhea and cramps ... etc. etc..... There is a supplement called "glucosamine and chondroitin" that can help rebuild cartilage. It is readily available at the major drug chains (Walgreen, Eckerd, etc.), discount stores (Wal-Mart, K-Mart, etc.) and health food stores/internet stores. You must take it for 2-3 months to have any benefit. There are many brands that are GF - check the labels.Website references: http://www.arthritis.org/conditions/ alttherapies/Glucosamine.asp<A HREF="http://arthritis.about.com/cs/ glucosamine/"> http://arthritis.about.com/cs/glucosamine/</A> I am not aware of this connection. However, I have 4 bad lumbar discs with a lot of degenerative disc disease. I am 43. Recently I sought some experimental treatment on my back in Los Angeles (you may find some description of this treatment at www.diskcure.com). My parents, who live in L.A. were present. The neurologist inquired as to whether there was a family history of disk disease. There is not. And I am the only one who claims a gluten problem. Not that this is conclusive of course. after four back operations, lots of joint problems and lots of pain I finally found out how to contol it. Most glucosamine/chondroitin doesn't work, but Cosamin DS works very well. Add SAM-e to it and all my problems have disappeared. And it is gradually getting better. I also very gradually replaces the fluid in joints, whereas, ibuprofen gradually depletes it. If you want more info let me know. Yes, osteo arthritis is also an autoimmune disease and is associated with celiac. I have a similar thing going on in me. I went 40 years undiagnosed with CD and am now just getting a handle on it. For the last ten years the majority of my symptoms have been degenerative disc disease in the spine and rheumatoid arthritis that jumps from joint to joint. I sometimes get it in the shoulder and neck and then it goes to my hip and then it goes to my toes. I haven't had to have joint replacement yet. Before I found out I was CD last June I was having terrible pains in my right hip for years. Since I have gone GF 99% of those pains are gone now. I still have arthritis in my right big toe and on the left foot in the little toe, and on the lower left back. I have occasionally been getting pains in the ribs above the heart on the back recently. So I don't know what is going on. It seems some of the pains got better when I went GF, and now some are coming I never had before. I turned 40 last year. I have suffered with bad CD symptoms over the last 10 years. I was going to rheumatologists for the last ten years because it looked like it was just rheumatoid arthritis, but I ended up in the ER last June after eating wheat germ. My abdomen nearly ruptured the next day after I ate the wheat germ and I spent the day in the ER back then. At the time then the doctors started saying my odd symptoms for the last decade suddenly made sense. I never had the classic CD symptoms. I had distended abdomen and steatorrhea for the last decade. I had malnutrition and body wide inflammatory problems. I did not suffer with nausea or vomiting or weight loss however. I was if anything grossly overweight. I weighed 205 pounds but am only 5' 9". My father was about the same height as me and he weighed 150 pounds. So after going GF in June last year now I weigh 160 pounds. I lost 40 pounds in 9 months. I have the problem in its early stages, and only recently noticed, and have only been gluten free 17 months, age 55 now. Doctor and I have blamed "achy knees" on high school cheerleading, and years of being on my feet as an Intensive Care RN. Yes, I also have degenerative disc deterioration in the neck and back (was 53 when diagnosed). Have had carpal tunnel surgery and periodic trouble with rotator cuff. I also assume it's from years of undiagnosed CD. I do, however, notice a tremendous difference in arthritic pain now that I'm gluten free. Well I have been gf for three years but celiac my entire life w/o knowing it. I was diagnosed with degenerative disc disease in my neck as well, after having numerous x-rays and a MRI. I will be seeing my orthopedic next week about all of my results and my condition. I was in a car accident and my neck was hurt as a result however I don't know if my condition and the accident are completely connected yet. It may be that I was calcium deficient for so long. So we'll see, He is an anti-drug person so I was totally surprised when he bought soI have a similar thing going on in me. I went 40 years undiagnosed with CD and am now just getting a handle on it. For the last ten years the majority of my symptoms have been degenerative disc disease in the spine and rheumatoid arthritis that jumps from joint to joint. I sometimes get it in the shoulder and neck and then it goes to my hip and then it goes to my toes. I haven't had to have joint replacement yet. Before I found out I was CD last June I was having terrible pains in my right hip for years. Since I have gone GF 99% of those pains are gone now. I still have arthritis in my right big toe and on the left foot in the little toe, and on the lower left back. I have occasionally been getting pains in the ribs above the heart on the back recently. So I don't know what is going on. It seems some of the pains got better when I went GF, and now some are coming I never had before. I turned 40 last year. I have suffered with bad CD symptoms over the last 10 years. I was going to rheumatologists for the last ten years because it looked like it was just rheumatoid arthritis, but I ended up in the ER last June after eating wheat germ. My abdomen nearly ruptured the next day after I ate the wheat germ and I spent the day in the ER back then. At the time then the doctors started saying my odd symptoms for the last decade suddenly made sense. I never had the classic CD symptoms. I had distended abdomen and steatorrhea for the last decade. I had malnutrition and body wide inflammatory problems. I did not suffer with nausea or vomiting or weight loss however. I was if anything grossly overweight. I weighed 205 pounds but am only 5' 9". My father was about the same height as me and he weighed 150 pounds. So after going GF in June last year now I weigh 160 pounds. I lost 40 pounds in 9 months. I have the problem in its early stages, and only recently noticed, and have only been gluten free 17 months, age 55 now. Doctor and I have blamed "achy knees" on high school cheerleading, and years of being on my feet as an Intensive Care RN. Yes, I also have degenerative disc deterioration in the neck and back (was 53 when diagnosed). Have had carpal tunnel surgery and periodic trouble with rotator cuff. I also assume it's from years of undiagnosed CD. I do, however, notice a tremendous difference in arthritic pain now that I'm gluten free. Well I have been gf for three years but celiac my entire life w/o knowing it. I was diagnosed with degenerative disc disease in my neck as well, after having numerous x-rays and a MRI. I will be seeing my orthopedic next week about all of my results and my condition. I was in a car accident and my neck was hurt as a result however I don't know if my condition and the accident are completely connected yet. It may be that I was calcium deficient for so long. So we'll see, capsules "to try" while we were at the health food store one day. They were glucosamine/condroitin (sp?). He also got some of the cream to rub on his hips at night. He swears by this supplement and tells everyone he sees who is having joint problems. We have even seen medical evidence in some publications that it actually restores some of the lost cushioning between the bones. I don't have any interest in this product, just am terribly glad that my husband has received some much needed relief from his aching limbs and wish the best for others with this product. I would think the answer to your question is YES. I am in my sixties and was diagnosed only a few months ago. I have had disc degeneration for many years. I know that this is contributed to CD and not being diagnosed at a young age. I have a daughter that also has disc generation and deals with a lot of pain. I'm curious can you determine how long you think you've had CD and were you also or have been diagnosed with malabsorption syndrome, a secondary complication of CD. I was diagnosed with borderline malabsorption in November which got much worse when the GI doctor put me under three gluten challenges during November and December. Last September, after sweeping my garage, I experienced extreme neck fatigue and for the next three days, I needed assistance to get out of bed because if I even moved my next a fraction of an inch, I would experienced excruciating pain. At the time, I thought that I had reinjured a whiplash injury from 1997 resulting in a bulging disk after a red light runner totalled my car. My neck fatigue was so intense that to eat, I had to support pillows under my neck or try to hold my neck up with my arms. My old neck brace was too soft to keep my neck from having spasms and horrible pain. I had to lay partially upright for three days resting my neck almost all day. For about two weeks, I slept partially upright so when my husband went back to work, I could get myself out of bed. Now, I attribute that neck disability and a hand burn I got in April 2001 which wouldn't heal from my malabsorption which began about April but didn't get worse until after I went to Europe in July and eat a lot of french bread. My hand burn didn't start healing until October when I went gluten-free for three weeks. I was already seeing a GI doctor since June but he only believed I had Lactose Intolerance and Irritable Bowel Syndrome. I discovered through my symptoms and a food journal as well as reading tons of medical literature my research doctor husband brought home for me to read, that I had Celiac Disease even before seeing my 3rd Gastroenterologist in five years, back in November 2001. I think that if you remember your stools degrading in appearance (diarrhea, puffy, fluffy, pale, spongish, etc.), you may indeed had been malabsorbing for years. I met a Celiac who was told she had Fibromyalgia and Osteoporosis. She explained that when she lifted her hip to walk, her feet were still on the ground. When the doctors looked into her ankle, they discovered she had lost bone mass which settled in her ankle, and they had to literally vacuum the bone fragments out of her foot. Soon after, (her late 40s) they discovered she had been suffering from Celiac Disease. She's now off of her crutches and seems to be physically able. I think that they will be making many more findings about the consequences and complications of not being diagnosed early. My friend who is a former nurse from Sweden says that the government there takes Celiac D. so seriously that they test any baby they suspect who isn't growing fast enough and they test anyone with depression, rheumatoid arthritis, diabetes Type 1, or other psychiatric disorders and etc. for Celiac D. She says that now they almost see no adults with Celiac D. because they've caught them sooner. She says that the problem is that now the public is so aware that many who suspect they have the disease go gluten-free before they get the diagnosis and the government tries to discourage people because the govt. believes a change is diet is a drastic measure and should not be promoted unless for a definite diagnosis. I suspect you are right. I have nerve root compression bilaterally at two levels in my lower spine, and degenerative changes in my neck, as well as chronic arthritis and bursitis. My symptoms go back to my teens for the arthritis, and back to my 20s for the back and neck problems. By the time I got treatment for my back in my 40s, I had some permanent nerve damage due to the long-standing nature of the conditions (which my doctors previously just called "sciatica" and told me to take aspirin). Fortunately, a year of physical therapy got me functional again, and I have very little pain anymore. I have a little weakness in my right leg from the nerve damage, but it isn't too bad. I just have to be sure my foot clears the floor when I walk or I will trip on nothing. I didn't discover my gluten intolerance until my early 50s, so I also suspect along with you that going a long time without the proper diagnosis or treatment of CD contributed to this condition. My arthritic symptoms are WAY better now that I'm off gluten, but come back if I have a gluten accident. Well, we can't change what's already happened (to our bones, nerves anyway) but if surgery/therapy can correct damage enough to make life productive - then we'll be OK. As long as we avoid the problem that caused it in the first place! Staying G-F is small price to pay! We can hopefully prevent continuing degeneration of our skeletons!