I have been recently diagnosed with celiac after an endoscopy. I Have never had symptoms (but osteoporosis now), how will I know what might not be good (dairy etc).

[Lynn G]

• e 

[trents]

Lynn G, welcome to the forum!

Your story is not an uncommon one. You are what we call a "silent" celiac. That is, you lack noticeable GI distress. Essentially, that is also my story. Elevated liver enzymes was what led to my diagnosis. It took me 13 years to get a diagnosis and by that time I had developed osteopenia and kyphosis.

Be aware that the longer you are off gluten the less tolerant of it you may become. Before my diagnosis 20 years ago I could consume plenty of gluten with little or no discernible repercussions. Now, if I get "glutened" I get violently ill with hours of intractable emesis followed by hours of diarrhea. When you stop consuming gluten, it is common you lose whatever tolerance to it you had.

But to answer your question, it would be important for you to get regular testing to see if inflammation is subsiding and the villi are healing. I would recommend getting an antibody test at six months and a biopsy at the end of a year after going gluten-free. If you are absolutely certain that you have been avoiding any regular glutening then persistently positive antibodies and lack of healing of the villi would suggest that the inflammation is being caused by something else such as a med, oats, dairy, soy, corn or eggs (just to name some of the most common non-gluten offending foods). It often takes around two years for complete healing of the villi even on a strict gluten-free diet.

[Wheatwacked]

As far as food choices you want to avoid anything that has wheat, gluten or rye. Read labels.

The good thing about meat, vegetables, fruit, leafy greens, and beans is that the labels are too tiny to write on so there is no added wheat. Apples, steak, potatoes, eggs not processed, good to eat. Boxes and bottles and bags: always read the labels. A 10 second glance can save hours of agony. Many newly diagnosed complain of new food intolerances. Don't fight it, just make sure you are replacing the essential vitamins and minerals from that food with another source. Eventually if you maintain a gluten free diet you will heal. According to the Merck Manual, treatment is a gluten free diet and supplements to address any deficiencies. Do not underestimate the effect these deficiencies may have on you. Doctors are not trained for this. Except for vitamin D plasma, blood test results can be misleading. You may have deficiencies not related to Celiac.

 

 

 

[trents]

 

[Lynn G]

3 hours ago, trents said:

Lynn G, welcome to the forum!

Your story is not an uncommon one. You are what we call a "silent" celiac. That is, you lack noticeable GI distress. Essentially, that is also my story. Elevated liver enzymes was what led to my diagnosis. It took me 13 years to get a diagnosis and by that time I had developed osteopenia and kyphosis.

Be aware that the longer you are off gluten the less tolerant of it you may become. Before my diagnosis 20 years ago I could consume plenty of gluten with little or no discernible repercussions. Now, if I get "glutened" I get violently ill with hours of intractable emesis followed by hours of diarrhea. When you stop consuming gluten, it is common you lose whatever tolerance to it you had.

But to answer your question, it would be important for you to get regular testing to see if inflammation is subsiding and the villi are healing. I would recommend getting an antibody test at six months and a biopsy at the end of a year after going gluten-free. If you are absolutely certain that you have been avoiding any regular glutening then persistently positive antibodies and lack of healing of the villi would suggest that the inflammation is being caused by something else such as a med, oats, dairy, soy, corn or eggs (just to name some of the most common non-gluten offending foods). It often takes around two years for complete healing of the villi even on a strict gluten-free diet.

 

[Lynn G]

1 minute ago, Lynn G said:

 

Thanks. The way I got diagnosed was having an T11 fracture for no apparent reason which led to blood test and then endoscopy. I am borderline osteoporosis, still in the osteopenia range. 

[RMJ]

I didn’t have typical celiac digestive symptoms - I was tested because there is a possible link between celiac and migraines.  However, once I went gluten free and my antibody levels normalized I just felt better.  Your celiac may cause issues that you don’t realize are due to celiac or even problems.

[trents]

2 hours ago, Lynn G said:

Thanks. The way I got diagnosed was having an T11 fracture for no apparent reason which led to blood test and then endoscopy. I am borderline osteoporosis, still in the osteopenia range. 

Lynn, you seem to be posting twice with each new entry, one of them being blank. If you want to quote someone else's post you an click on Quote & Reply or if you don't want to quote someone, just scroll down the page a little more until you see your picture and click below that and a little toward the center of the page. A text box will then appear allowing you to type.

Edited March 5, 2022 by trents

[Wheatwacked]

Osteopenia is scary. I was diagnosed with it last year, but in addition to Celiac I also am old, smoke and take prednisolone, all other risk factors. There are drugs like Fosimax but the side effects exceed the benefits, I think. Some research shows the benefit of these drugs only work in combination with vitamin D and calcium and is only slightly better than D and calcium alone. Read this https://www.drugwatch.com/fosamax/side-effects/

High calcium intake and vitamin D supplementation during space flight does not affect bone metabolism, but prevents an elevation of serum calcium level through increased calcitriol level, while vitamin K counteracts the reduction in bone formation.   Interventions to prevent bone loss in astronauts during space flight - PubMed (nih.gov) https://pubmed.ncbi.nlm.nih.gov/16077253/ . Seems like they are missing something. NASA did come up with Tang.

Calcium, phosphorus, zinc, potassium and magnesium are necessary minerals for bones that must come from our diets. Vitamins D, K, and A are also needed for normal bone metabolism. They are all absorbed in the small intestine so should be of concern to anyone with damaged villi. There is actually more potassium in the lower ribs and the hips than calcium. Has to do with brittleness, since these bones do require some flexibility to move and absorb impacts without cracking.

Vitamin A supplements can have serious side effects, especially for smokers, so I take up to a tablespoon of Cod Liver Oil several times a week. https://www.theguardian.com/science/1999/apr/29/cancer.uknews  Cod Liver Oil conveniently also has omega 3 to help combat the inflammation caused by to much omega 6 in the Western Diet. 

15 ml Cod Liver Oil = 4050 mcg RAE of vitamin A. RDA is 900 to 3000 mcg a day.

 

[Wheatwacked]

When I was a kid they almost always put a sprig of parsley on the plates when I ate in a diner. No one knew why, just to make it look nice. I don't think they do anymore, but now I know why. 10 mg fresh parsley has 100% RDA of vitamin K.

[Lynn G]

4 hours ago, Wheatwacked said:

Osteopenia is scary. I was diagnosed with it last year, but in addition to Celiac I also am old, smoke and take prednisolone, all other risk factors. There are drugs like Fosimax but the side effects exceed the benefits, I think. Some research shows the benefit of these drugs only work in combination with vitamin D and calcium and is only slightly better than D and calcium alone. Read this https://www.drugwatch.com/fosamax/side-effects/

High calcium intake and vitamin D supplementation during space flight does not affect bone metabolism, but prevents an elevation of serum calcium level through increased calcitriol level, while vitamin K counteracts the reduction in bone formation.   Interventions to prevent bone loss in astronauts during space flight - PubMed (nih.gov) https://pubmed.ncbi.nlm.nih.gov/16077253/ . Seems like they are missing something. NASA did come up with Tang.

Calcium, phosphorus, zinc, potassium and magnesium are necessary minerals for bones that must come from our diets. Vitamins D, K, and A are also needed for normal bone metabolism. They are all absorbed in the small intestine so should be of concern to anyone with damaged villi. There is actually more potassium in the lower ribs and the hips than calcium. Has to do with brittleness, since these bones do require some flexibility to move and absorb impacts without cracking.

Vitamin A supplements can have serious side effects, especially for smokers, so I take up to a tablespoon of Cod Liver Oil several times a week. https://www.theguardian.com/science/1999/apr/29/cancer.uknews  Cod Liver Oil conveniently also has omega 3 to help combat the inflammation caused by to much omega 6 in the Western Diet. 

15 ml Cod Liver Oil = 4050 mcg RAE of vitamin A. RDA is 900 to 3000 mcg a day.

 

 

[Lynn G]

4 hours ago, Wheatwacked said:

Osteopenia is scary. I was diagnosed with it last year, but in addition to Celiac I also am old, smoke and take prednisolone, all other risk factors. There are drugs like Fosimax but the side effects exceed the benefits, I think. Some research shows the benefit of these drugs only work in combination with vitamin D and calcium and is only slightly better than D and calcium alone. Read this https://www.drugwatch.com/fosamax/side-effects/

High calcium intake and vitamin D supplementation during space flight does not affect bone metabolism, but prevents an elevation of serum calcium level through increased calcitriol level, while vitamin K counteracts the reduction in bone formation.   Interventions to prevent bone loss in astronauts during space flight - PubMed (nih.gov) https://pubmed.ncbi.nlm.nih.gov/16077253/ . Seems like they are missing something. NASA did come up with Tang.

Calcium, phosphorus, zinc, potassium and magnesium are necessary minerals for bones that must come from our diets. Vitamins D, K, and A are also needed for normal bone metabolism. They are all absorbed in the small intestine so should be of concern to anyone with damaged villi. There is actually more potassium in the lower ribs and the hips than calcium. Has to do with brittleness, since these bones do require some flexibility to move and absorb impacts without cracking.

Vitamin A supplements can have serious side effects, especially for smokers, so I take up to a tablespoon of Cod Liver Oil several times a week. https://www.theguardian.com/science/1999/apr/29/cancer.uknews  Cod Liver Oil conveniently also has omega 3 to help combat the inflammation caused by to much omega 6 in the Western Diet. 

15 ml Cod Liver Oil = 4050 mcg RAE of vitamin A. RDA is 900 to 3000 mcg a day.

 

4 hours ago, Wheatwacked said:

Osteopenia is scary. I was diagnosed with it last year, but in addition to Celiac I also am old, smoke and take prednisolone, all other risk factors. There are drugs like Fosimax but the side effects exceed the benefits, I think. Some research shows the benefit of these drugs only work in combination with vitamin D and calcium and is only slightly better than D and calcium alone. Read this https://www.drugwatch.com/fosamax/side-effects/

High calcium intake and vitamin D supplementation during space flight does not affect bone metabolism, but prevents an elevation of serum calcium level through increased calcitriol level, while vitamin K counteracts the reduction in bone formation.   Interventions to prevent bone loss in astronauts during space flight - PubMed (nih.gov) https://pubmed.ncbi.nlm.nih.gov/16077253/ . Seems like they are missing something. NASA did come up with Tang.

Calcium, phosphorus, zinc, potassium and magnesium are necessary minerals for bones that must come from our diets. Vitamins D, K, and A are also needed for normal bone metabolism. They are all absorbed in the small intestine so should be of concern to anyone with damaged villi. There is actually more potassium in the lower ribs and the hips than calcium. Has to do with brittleness, since these bones do require some flexibility to move and absorb impacts without cracking.

Vitamin A supplements can have serious side effects, especially for smokers, so I take up to a tablespoon of Cod Liver Oil several times a week. https://www.theguardian.com/science/1999/apr/29/cancer.uknews  Cod Liver Oil conveniently also has omega 3 to help combat the inflammation caused by to much omega 6 in the Western Diet. 

15 ml Cod Liver Oil = 4050 mcg RAE of vitamin A. RDA is 900 to 3000 mcg a day.

Thank you. I have read the articles and for me, the benefits outweigh the risk. The majority of those who got a femur fracture had been on Fosamax for 7 years. You are never supposed to be on it more than 5 years. I had already broken my back before I was diagnosed with celiac or osteopenia for no apparent reason.
it’s also important to repeat  bone density scans every 2 years. My friend was able to discontinue Fosamax after 4 years. So far, I haven’t had any problems with my gastrointestinal or esophagus systems. I don’t smoke or take prednisone and previously felt I was pretty healthy, worked out 4 days a week (I’m 72). It is always a challenge but it’s important to look at all the evidence and be on top of our health. Having celiac was a complete surprise to me and I wonder how long I have had it to have caused my bones such a decrease in density from 4 years ago.

 

[ALBANICKAP]

On 3/5/2022 at 3:42 PM, Lynn G said:

Thanks. The way I got diagnosed was having an T11 fracture for no apparent reason which led to blood test and then endoscopy. I am borderline osteoporosis, still in the osteopenia range. 

I have had 3 vertebrae fractures, 1 pelvic and a sacrum fracture just walking.  I've been on Prolia for 5 years, no fractures since. I hope u have success in protecting your bones.

 

[Lynn G]

Wow! 3 vertebrae fractures, one laid me up for 3 months. Glad you are doing better, that gives me hope. Is Prolia the same as Fosamax?