First Post: Diagnosed Via Low Bone Density - Prognosis?

[rukh]

Hi, I'm new here.  I have trouble being concise, but I'll try.  Right now, I could stomp my foot and break a toe. The latest one broke when I dropped a single "D" battery on it for waist height.  The one before that was missing a step going up stairs.  And I've broken other bones too.  The toes are to the point where I just ignore it until it heals in 5-6 weeks.  The worst one put me out of commission for long enough to lose 25 lb of muscle mass from atrophy. It was actually the bone density that lead to my diagnosis of celiac disease, despite many other symptoms being present (caring, but unskilled doctors).

 

My [first, most pressing] question:

 

Those of you that had scans showing low bone density, how much did your bone density improve over time?  Do you still have to be more careful than other people?  Will I ever be able to mountain bike again without fear that a simple dab with break my ankle?  

 

Nobody seems to be able to tell me what the likelihood is that I'll be able to go back to doing active sports without fear.  NIH searches tend to indicate an incomplete bone density recovery is likely, but that doesn't give me a practical answer to the question of what is likely to happen going forward.  I'm in my 30's, so none of the bone density meds are recommended and it doesn't seem like there are any other known causes/solutions.

[NoGlutenCooties]

Welcome to the forum!

 

I too was diagnosed with osteopenia and I've only been gluten-free for 3 months so what I'm about to tell you is from doctors, folks on this forum, and my own research - not proven by personal experience.  I'm 42 and have been told that once I get all of the gluten out of my system my body will definitely be able to rebuild my bones and that I should be able to get back to normal bone density before I hit menopause.  Menopause makes building bone much more difficult, so I'm working against the clock.  But if they are confident that I can do it and you're only in your 30s then I would suspect you can do it too.

 

Have you had your Vitamin D levels tested?  Low D as well as other vitamins and minerals are common in Celiacs and you should have a full blood panel run to see where you're lacking.  Start taking a good multi-vitamin and perhaps some extra singlar vitamins depending on the outcome of the tests.  Once you've been gluten-free for a few months, start exercising to help your body rebuild bone.  Given that you are so prone to breaks, I would not suggest jumping into lifting heavy weights - start out slowly.  Even walking briskly on a regular basis can help build bone.  After about 6 months of gluten-free get another bone density test and see if your doctor thinks you could safely begin doing weight-baring exercises.

 

From everything I've read, there is hope.  Depending on how long you've been Celiac, how long it takes your body to get rid of the lingering antibodies, how healthy you are in general, how deficient you are in various vitamins and minerals, etc. etc. will all have an effect on how long it will take for you to get back to normal.  Be patient.  It could take a couple of years.  But it's doable IMHO.

 

Good luck!

 

 

(Edit - forgot to mention... probiotics and digestive enzymes help to speed up the healing process and get your gut back to normal so that you can start absorbing nutrients again)

[NoGlutenCooties]

One other thing I forgot to mention... be sure that you are 100% gluten-free.  No cross-contamination.  No cheating.  With Celiac it is all or nothing.

[cyclinglady]

I suffered a vertebrae fracture three months after my diagnosis in March, 2013. I am 52 so building bone is going to be tough. I take calcium, vit. D, and magnesium, plus I am on hormones. From my research, the bone drugs do a good job, but they build on bad bone --no cleaning of the bone that your body normally does.

Next, I walked and walked. Lifted weights once my back healed. Bought a new comfort bike and am riding again. My road bike is still in the garage, but I am running again. So there is hope!

[rukh]

Thanks for the replies!  

 

My family doctor put me on D in response to my low bone density (actually significantly higher than normal in my hips, low in my spine, extremely low in my extremities).  She never did any of the tests I later found are the first steps when someone my age has low bone density (hormones, gluten sensitivity, etc).  

 

I worry about cross contamination.  No risk of "cheating" here, the punishment is too severe!   I've simply gone without eating when there was no gluten free option, so I know nothing will tempt me.  I get GERD pain to the point of being non-functional if a restaurant poisons me.  My wife's favorite place is also a bakery, and I quickly found out the reason things like fried eggs were making me sick is because there is flour in the air in the room next to the one they cook breakfast in.  If no GERD means sufficient lack of gluten, I've only been poisoned about 4-5 times in the last 3 months.  Is that sufficient reduction in contact with gluten?  Why is it that people say bone density will not rebuild if there is ANY gluten?

[kareng]

Thanks for the replies!  

 

My family doctor put me on D in response to my low bone density (actually significantly higher than normal in my hips, low in my spine, extremely low in my extremities).  She never did any of the tests I later found are the first steps when someone my age has low bone density (hormones, gluten sensitivity, etc).  

 

I worry about cross contamination.  No risk of "cheating" here, the punishment is too severe!   I've simply gone without eating when there was no gluten free option, so I know nothing will tempt me.  I get GERD pain to the point of being non-functional if a restaurant poisons me.  My wife's favorite place is also a bakery, and I quickly found out the reason things like fried eggs were making me sick is because there is flour in the air in the room next to the one they cook breakfast in.  If no GERD means sufficient lack of gluten, I've only been poisoned about 4-5 times in the last 3 months.  Is that sufficient reduction in contact with gluten?  Why is it that people say bone density will not rebuild if there is ANY gluten?

 

If you have Celiac disease, then even a small, tiny amount of gluten, keeps the antibodies going.  The antibodies continue to attack the small intestine and effect absorption of nutrients/vitamins.  

 

For people who just stop eating gluten to see  if it might help with a certain problem -I don't think it is known whether the small amounts from a bakery or a shared colander or a hamburger taken off the bun will hurt your progress or not.  Partially because you don't know if you have Celiac or any other issue.

 

The thing is, osteoporosis & low vitamin levels are very real symptoms of Celiac Disease.  I think its horrible that your doctor wouldn't test you for Celiac before telling you to go gluten free.

 

 

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[cyclinglady]

Thanks for the replies!  

 

My family doctor put me on D in response to my low bone density (actually significantly higher than normal in my hips, low in my spine, extremely low in my extremities).  She never did any of the tests I later found are the first steps when someone my age has low bone density (hormones, gluten sensitivity, etc).  

 

I worry about cross contamination.  No risk of "cheating" here, the punishment is too severe!   I've simply gone without eating when there was no gluten free option, so I know nothing will tempt me.  I get GERD pain to the point of being non-functional if a restaurant poisons me.  My wife's favorite place is also a bakery, and I quickly found out the reason things like fried eggs were making me sick is because there is flour in the air in the room next to the one they cook breakfast in.  If no GERD means sufficient lack of gluten, I've only been poisoned about 4-5 times in the last 3 months.  Is that sufficient reduction in contact with gluten?  Why is it that people say bone density will not rebuild if there is ANY gluten?

My husband found that many restaurants use oil that contain barley. Ask for a clean frying pan (no grille) and butter.

That said, Karen is right, you should get tested. I am officially diagnosed, but my husband is not. He refuses to get tested now that he has been gluten free for 13 years. He would tell you that I have had so much more support from family, friends and medical staff.

[kareng]

Or....did you get tested? I took it to mean that you only had a bone scan and he told you to eat gluten free. But reading back....maybe you did get Celiac tests, too? If that is the case, you can't have a tiny mount of gluten if you can at all avoid it. If that means no restauraunt, then that is what you must do.

[GFinDC]

HI RukH,

 

One study showed some remaining intestinal changes (abnormal) after people were on the gluten-free diet for 18 months.  It is not a quick process to recover from celiac intestinal damage.   The antibodies taper off slowly, and may remain active for weeks to months depending on the person.  And the immune system is very sensitive and makes new antibodies whenever it detects a tiny bit if gluten.  Your body thinks of gluten as germs now, and it isn't going to willing let germs invade and conquer your cells.  It's going to fight back.  So keeping as close to 100% gluten-free as possible should be the goal for all celiacs.

 

The villi damage in the small intestine causes difficulty absorbing nutrients (malabsorption).  That causes a whole host of problems in the body as it affects the entire body, not just the gut.

 

I fell about 3 feet and broke my left elbow in 5 places some years ago.  I haven't had any more breaks though and never had a bone density scan.  Recovery for your bone health is likely to take up to 2 years IMHO.  You are dealing with malabsorption and healing at the same time.  There are some vitamins that are supposed to be more easily absorbed.  And some are meant to dissolve under the tongue (sub-lingual).  It might be worth looking into them.

 

The lack of vitamins and minerals can impede healing and recovery.  But your gut may not absorb them right until it heals.  Kind of a catch 22.  So getting it healed is important.  A very simple diet with few processed foods can help at the beginning.  Lots of meat, nuts and veggies is a good diet.  Your body needs protein to build cells.

 

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy if it causes symptoms.
Avoid sugars and starchy foods.
Avoid alcohol.
Watch out for cross contamination.

Helpful threads:

FAQ Celiac com
https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
https://www.celiac.com/forums/topic/91878-newbie-info-101/

[blmoreschi]

Osteoporosis is also what led to my 11 year old daughter's Celiac diagnosis last April. After 6 months gluten-free, her TtG was down to 6 (previously 99) and we presume that her gut is healing well. I have, belatedly, decided to put her on probiotics, too, based on all my reading. Her bone density did not show any improvement in 6 months. Because she is pre-pubertal and about to go through a huge growth phase, we are having to be more proactive about increasing her bone density and are treating her with IV bisphosphonates (such as Fosamax or Boniva). This was not a decision we made easily, and one we are still somewhat uncomfortable with. So - to all of you others out there - please don't rag on me about that. I'm just trying to share my experience with this new poster.

 

I have done TONS of reading on this subject (or as much as I can find anyway) and there is very little pediatric experience with bone density recovery after a Celiac Diagnosis. However, from what I can tell you should be able to expect some normalization in yours in the 2 year gluten-free range. There is a lot more information about adult patients. But, we also found some articles (published in Turkey and Italy) that indicate that 20% of Celiac's don't get the bone density recovery just from going gluten-free. They think there is a secondary autoimmune reaction going on, or possibly inflammation. They did find, however, that those patients responded to bisphosphonate therapy.

 

Good luck to you, and I would suggest all the exercise you can get even though you are worried about fracturing. Our motto is "strong muscles protect weak bones" and we try to avoid contact sports but let our daughter do most everything else she wants to do. Fortunately, she is a dedicated ballerina and that is the best exercise in the world for her to build strong muscles and bones. Maybe you could try yoga?