Newly diagnosed Celiac with Osteoporosis

[Parkrunner]

I am an atypical Celiac patient.  Received the results of my endoscopy today.  Positive.  Blood tests were 4 months ago and were positive also. Yes, it took that long to get the endoscopy.  Started going gluten free the day before the endoscopy.

I'm pretty sure my Celiac situation is not that uncommon, but combined with my Osteoporosis and other circumstances, my case is probably pretty rare, 4 standard deviations from the norm at least.  Celiac can cause Osteoporosis; that's well known.  My Celiac was pretty silent.  My first real symptom was 2 fractured vertebrae (T7,T8), which occurred while running.  I'm an athlete.  When I'm in shape, I'm in the top 1% in fitness.  3 years ago I had to cancel a planned run across the Grand Canyon for family reasons.  I did everything right to prevent Osteoporosis, except get tested for Celiac.  I'm in the top 1% in health also.  In general I feel great, mentally and physically.   I'm at the right weight, don't smoke, light drink, no medications/drugs, eat very healthy, eat little processed foods, annual blood tests are almost always perfect.  (No, I'm not one of the organic/non-gmo/free-range people, because I support science.)

20 years ago I thought I might have Celiac because I went through a 6 week period of significant intestinal distress.  Major malabsorption in the large intestines.  But after reading about Celiac symptoms, I ruled it out.  2 doctors couldn't find out what was wrong.  One said Irritable Bowel Syndrome. Since then no battle with intestinal distress, just some intestinal annoyance, which I thought was related to running.  So basically, my Celiac was symptom free, until I had the fractures.

So 0.75% of Americans have Celicac.  60% are women.  71% of Osteoporosis patients are women.  4.5% of Osteoporosis patients have Celiac.  I'm a 68yo male; live healthy, eat healthy, very fit.  So there I am, 4 to 5 standard deviations, and boom 2 fractures that stop my lifestyle.  My spine doctor sent me to my primary care physician.  When my PCP was stumped, he sent me to an Osteoporosis specialist.  This guy did the blood test for Celiac, and then he referred me to a GI doctor, which took 4 months to have the Endoscopy/Biopsy.  Over 8 months from fracture to confirmed diagnosis (welcome to Medicare).

If I had to do it over again, I would skip the biopsy and start the gluten free diet immediately after the blood test so I could start to heal 4 months earlier.  Darn, I wheat based bread.  Tried some brown rice bread this week.  That's going to be an acquired taste.  Tried cauliflower crust pizza.  Not bad.  Tried some cauliflower based pasta. Not good.  Visited a gluten-free bakery.  No thanks. ($9 loaf of bread, $6 cupcakes)

I have a lot to learn but I'm making progress.

[trents]

Welcome to the forum, Parkrunner!

What makes you think you are atypical in your celiac experience and "standard deviations" from the norm? There are many "silent celiacs" who don't have major GI symptoms but get diagnosed via other health problem pathways. I'm one. Elevated liver enzymes led to my diagnosis. Yeah, I had some minor GI distress but nothing consistent enough or dramatic enough to cause me to seek our medical advice. It took me 13 years to get a dx from the onset of elevated liver enzymes and I'm sure I had celiac disease long before that. And by the time I was finally diagnosed I had become slightly anemic with osteopenia. And, like you, I was physically fit. I ran and lifted weights. Your story is actually more typical than you think.

Yes, it takes a while to get used to gluten-free food substitutes but after awhile it becomes the new norm. There are so many more good gluten-free choices than there were 20 years ago when I was diagnosed. The expensiveness of gluten-free food is another issue, however. Most of us find that we can eat gluten free fairly economically on mainline food if we avoid processed stuff as much as possible and focus on fixing our own food using fresh and simple ingredients like fresh meat, fruit and vegetables.

By the way, as far as pasta goes, try Banza "chick pea floor" noodle products. 

Edited August 12, 2022 by trents

[Tracy414]

2 hours ago, Parkrunner said:

I am an atypical Celiac patient.  Received the results of my endoscopy today.  Positive.  Blood tests were 4 months ago and were positive also. Yes, it took that long to get the endoscopy.  Started going gluten free the day before the endoscopy.

I'm pretty sure my Celiac situation is not that uncommon, but combined with my Osteoporosis and other circumstances, my case is probably pretty rare, 4 standard deviations from the norm at least.  Celiac can cause Osteoporosis; that's well known.  My Celiac was pretty silent.  My first real symptom was 2 fractured vertebrae (T7,T8), which occurred while running.  I'm an athlete.  When I'm in shape, I'm in the top 1% in fitness.  3 years ago I had to cancel a planned run across the Grand Canyon for family reasons.  I did everything right to prevent Osteoporosis, except get tested for Celiac.  I'm in the top 1% in health also.  In general I feel great, mentally and physically.   I'm at the right weight, don't smoke, light drink, no medications/drugs, eat very healthy, eat little processed foods, annual blood tests are almost always perfect.  (No, I'm not one of the organic/non-gmo/free-range people, because I support science.)

20 years ago I thought I might have Celiac because I went through a 6 week period of significant intestinal distress.  Major malabsorption in the large intestines.  But after reading about Celiac symptoms, I ruled it out.  2 doctors couldn't find out what was wrong.  One said Irritable Bowel Syndrome. Since then no battle with intestinal distress, just some intestinal annoyance, which I thought was related to running.  So basically, my Celiac was symptom free, until I had the fractures.

So 0.75% of Americans have Celicac.  60% are women.  71% of Osteoporosis patients are women.  4.5% of Osteoporosis patients have Celiac.  I'm a 68yo male; live healthy, eat healthy, very fit.  So there I am, 4 to 5 standard deviations, and boom 2 fractures that stop my lifestyle.  My spine doctor sent me to my primary care physician.  When my PCP was stumped, he sent me to an Osteoporosis specialist.  This guy did the blood test for Celiac, and then he referred me to a GI doctor, which took 4 months to have the Endoscopy/Biopsy.  Over 8 months from fracture to confirmed diagnosis (welcome to Medicare).

If I had to do it over again, I would skip the biopsy and start the gluten free diet immediately after the blood test so I could start to heal 4 months earlier.  Darn, I wheat based bread.  Tried some brown rice bread this week.  That's going to be an acquired taste.  Tried cauliflower crust pizza.  Not bad.  Tried some cauliflower based pasta. Not good.  Visited a gluten-free bakery.  No thanks. ($9 loaf of bread, $6 cupcakes)

I have a lot to learn but I'm making progress.

Jovial brand gluten free pasta is good! I prefer that to any regular pasta. The Schär brand of bread is also pretty good $5/loaf). I like the 10 grains and seeds. Loaves and slices are smaller, but taste and texture are good! 

[LCAnacortes]

Same with Canyon Bakehouse gluten-free products. Taste and texture are good and the bread slices are smaller.

Consider taking supplements - a good multiple with Calcium, B Complex, D3, Magnesium, Niacin, Thiamine. You lose your B vitamins going gluten free. 

[Parkrunner]

Thank you for the food suggestions.  I have some Canyon (brown rice) bread.  Don't find that very tasty, yet.  Going to try a millet and chia bun with a salmon burger tonight.  It stands to reason that most bread products are wheat based because most people think they taste better than non-wheat grains.

I found that supplements don't work for me because my villi are damaged.  I've been taking good calcium supplements for decades because I'm lactose intolerant, and I still got osteoporosis.  Once my villi are repaired and working correctly, I may try some supplements if I think I'm short in some nutrients.

[trents]

4 minutes ago, Parkrunner said:

I found that supplements don't work for me because my villi are damaged.  I've been taking good calcium supplements for decades because I'm lactose intolerant, and I still got osteoporosis.  Once my villi are repaired and working correctly, I may try some supplements if I think I'm short in some nutrients.

It is unlikely that you have total inability to absorb nutrients so may you just need to increase the dosage of vitamin and mineral supplementation to increase the amounts that are being absorbed to the point where they are therapeutic. 

[Scott Adams]

Yes, you will need to boost your vitamin/mineral supplementation from here forward to help your recovery. Hopefully the doctors went over this, and this article  lists common deficeincies: