Newly Diagnosed

[Ybarra38]

I was recently diagnosed with Celiac disease after being diagnosed with Osteoporosis in my lumbar spine. I am a very active individual, don't smoke, no caffeine and light on the red meat and no family history of Osteo. My Provider tried to convince me this was just menopause. I insisted that this was pathological, and lo and behold, my PTH was staggeringly high. So, after testing and the EGD I got the confirmation of the diagnosis. I am wondering if i simply avoid any packaged, canned or bottled food if this will protect me from eating gluten? I also want to know what other names are used to describe gluten on packaging and what constitutes actual gluten free "food".

 

Thanks-

 

cynthia

[Scott Adams]

So simplify this, anything with "gluten-free" on the label should technically be gluten-free. For things that are not labelled that way look for "Contains Wheat" in the allergen statement at the end of the ingredients, because in the USA they must disclose this. Unfortunately this last thing won't cover barley, but this is not a common ingredient. Avoid for "malt" to avoid barley, but to get you fully up to speed, you may want to review our safe & forbidden lists:

 

 

[cyclinglady]

Hi Cynthia!

You might find this useful:

https://celiac.org/about-the-foundation/featured-news/2014/08/fda-gluten-free-food-labeling-information-page/

Ok.  Want to know the inside scoop?  Sure you can  switch over to a gluten free diet that is comparable to the Standard American Diet which is typically full of processed foods (often junk).  But that plan often leads to delayed healing.  Not all, but in many.  Avoiding gluten is tricky.  The learning curve is steep.  You also need to learn about cross contamination that can occur in a factory or even in your own kitchen.  Labeling rules sure have made it easier to buy processed foods, but I am not sure that is such a good thing.  

Like you, I was diagnosed just a few months after menopause.  Two months after than, I fractured my T7 and T9 doing nothing.  That is how my osteoporosis diagnosis was caught.  I wanted to save or build bone as quickly as possible.  I choose to use HRT instead of osteoporosis drugs after careful consideration and discussions with my doctor.  I also walked and once my fractures healed, I lifted weights and started running again.  I waited a full year before getting back on my bike and gave up roller skating and skiing.  

My husband had been gluten free for 12 years prior to my diagnosis.  So, I was excellent at reading labels.  But I had additional food intolerances due to a damaged gut.  It was just easier to consume REAL food.  I limit my processed foods.  I look for certified gluten free because I found that I am pretty sensitive.  The 20 ppm is good for most celiacs (based on a study of just 60 celiacs, sadly) but not all.  I am no longer lactose intolerant, but I still have a few other intolerances (e.g. garlic and onions) and I am allergic to nuts.  But the good news is that repeat biopsies have found that I have healed.  So, I think my approach works, but I realize that we are all unique and live under different circumstances, so we must each find our way.

Building bone is critical.  My scan two years later, revealed no changes.  But then no fractures either.  I keep moving forward and am happy.  I have not had other scans, because I am not going to change my behavior at this time.  

Let us know if you have more questions.  Welcome to the forum.  

 

[GFinDC]

Hi Cynthia,

Celiac disease can cause malabsorption of nutrients, so you might not be absorbing calcium, vitamin D and boron adequately.  Also some trace minerals may be low.  All these deficiencies can cause bone health problems.  Your doctor should be able to test for nutrient deficiencies.

[Ybarra38]

On 5/7/2020 at 2:49 PM, cyclinglady said:

Hi Cynthia!

You might find this useful:

https://celiac.org/about-the-foundation/featured-news/2014/08/fda-gluten-free-food-labeling-information-page/

Ok.  Want to know the inside scoop?  Sure you can  switch over to a gluten free diet that is comparable to the Standard American Diet which is typically full of processed foods (often junk).  But that plan often leads to delayed healing.  Not all, but in many.  Avoiding gluten is tricky.  The learning curve is steep.  You also need to learn about cross contamination that can occur in a factory or even in your own kitchen.  Labeling rules sure have made it easier to buy processed foods, but I am not sure that is such a good thing.  

Like you, I was diagnosed just a few months after menopause.  Two months after than, I fractured my T7 and T9 doing nothing.  That is how my osteoporosis diagnosis was caught.  I wanted to save or build bone as quickly as possible.  I choose to use HRT instead of osteoporosis drugs after careful consideration and discussions with my doctor.  I also walked and once my fractures healed, I lifted weights and started running again.  I waited a full year before getting back on my bike and gave up roller skating and skiing.  

My husband had been gluten free for 12 years prior to my diagnosis.  So, I was excellent at reading labels.  But I had additional food intolerances due to a damaged gut.  It was just easier to consume REAL food.  I limit my processed foods.  I look for certified gluten free because I found that I am pretty sensitive.  The 20 ppm is good for most celiacs (based on a study of just 60 celiacs, sadly) but not all.  I am no longer lactose intolerant, but I still have a few other intolerances (e.g. garlic and onions) and I am allergic to nuts.  But the good news is that repeat biopsies have found that I have healed.  So, I think my approach works, but I realize that we are all unique and live under different circumstances, so we must each find our way.

Building bone is critical.  My scan two years later, revealed no changes.  But then no fractures either.  I keep moving forward and am happy.  I have not had other scans, because I am not going to change my behavior at this time.  

Let us know if you have more questions.  Welcome to the forum.  

 

Thank you both for your reply. My inflammatory markers dropped from the high 200s to 30 at this point. I will retake the test in 4 weeks. My biggest concern is that my PTH was incredibly high and I will be retesting that in 2 months. Do you know much about hyperparathyroidism and Celiac?