Testing

[Jennifer Starr]

I became very sick last October. I entered my symptoms into google and came back as celiac disease. I quit eating gluten and feel much better but my new doctor does not think I have celiac. She does not believe me. I also did the 23 and me and it said I have two variants- one from each parent. I am 65 and have been sick most of my adult life. I have been tested in the past for just about everything else except gluten.  I know I will be very sick if I take the gluten challenge. My new doctor hasn’t even suggested this but I want to know if I have an absorption issue. If I take the challenge on my own the only gluten I want to ingest is beer. Is one beer a day enough?  Or will even 6 to 8 oz. be enough?  Or even every other day be enough? I know this is a weird question but I really don’t want to get sick from eating bread. I miss my beer so this will make the challenge a tiny bit more tolerable. I told my doctor I wanted an endoscopy but she didn’t respond to it at all. This would in my eyes clear up a lot of questions I have.  

This doctor wants me to take the shot Prolia for my osteoporosis and I don’t want to take it if I’m not absorbing calcium from my diet and only getting the calcium from my bones. Prolia stops the release of calcium into the blood stream.  What happens if I’m not absorbing calcium from my diet and my body can no longer get calcium from my bones because of Prolia?

I also read something about a short track to the blood test. Is there such a thing or does it really take 3 months. 

Thanks!

[kareng]

I am going to guess that 1 beer a day might not have enough gluten.  Some of them don’t have very much at all!  

People with Celiac, on a gluten-free diet will heal and absorb calcium and other vitamins/ nutrients.  

[Jennifer Starr]

Okay,

I have read that if you are old and have had symptoms for a long time it is possible that the villi will never recover. If this is not true I probably don’t have anything to be concerned with. 

Thank you!

 

[kareng]

20 minutes ago, Jennifer Starr said:

Okay,

I have read that if you are old and have had symptoms for a long time it is possible that the villi will never recover. If this is not true I probably don’t have anything to be concerned with. 

Thank you!

 

I just typed out a long explanation on the thread with the title “ Villi”.  Sorry, I don’t have time to repeat it.  Maybe read there and see if it makes sense to you?

https://www.celiac.com/forums/topic/127528-lets-talk-about-villi/?tab=comments#comment-1014716

Edited August 25, 2019 by kareng

[Jennifer Starr]

Might I add....... 

I insisted that my doctor check my calcium level before getting the Prolia shot which is recommended by the drug company. I had been and am currently taking a vitamin with 125% daily recommended allowance of Vitamin D3 but contained no calcium. I also (on purpose) had been getting extra sunlight to increase my vitamin D. Last week the doctor tested me for both vitamin D and calcium. My calcium was normal (even though I was not getting any supplement) but my vitamin D was very low.  I would have expected opposite results. 

I should be absorbing the vitamin D from my vitamin supplement but apparently I’m not. 

This whole thing isn’t very easy. 

[GFinDC]

Hi Jennifer,

Your doctor can test your vitamin and mineral levels now.  That way you know if you are low on anything besides vitamin D.  You may want to take some boron to help your calcium and vitamin D levels.  Boron extends the life of vitamin D in the body and also helps bone absorb calcium.

https://www.healthline.com/health/brains-bones-boron

People with celiac can be low on B vitamins and minerals too.  I was low on vitamin D for years even after going gluten-free.

I don't know if it is worth it for you to do the gluten challenge and get diagnosed.  Sometimes people have more worse symptoms when going back on gluten than before they went off it.  It doesn't seem to matter a whole lot what your doctor thinks about your possible celiac IMHO.  There are no drugs/medicines for celiac disease they can sell you.  The only treatment is the gluten-free diet, and possibly vitamins/minerals and time.  Maybe some probiotics and digestive aids too.

But you can do all these things without a doctors' help.

[cyclinglady]

2 hours ago, Jennifer Starr said:

Okay,

I have read that if you are old and have had symptoms for a long time it is possible that the villi will never recover. If this is not true I probably don’t have anything to be concerned with. 

Thank you!

 

I am old and post-menopausal.  I also have osteoporosis and suffered two vertebrae fractures just months after my celiac disease diagnosis.  I chose to do HRT for one year, weight-bearing exercise and diet high in calcium and vitamin D.  I only took iron supplements because I was very anemic and needed fast results.  Within months, my iron stores (ferritin) went up to within range, and my vitamin D increased too (like you, I went into the sun).  This strategy worked for me.  My bone scans show that I am holding my own and I have not had any fractures for five years.  A repeat endoscopy revealed healed villi.  

It is possible to heal your villi on a gluten free diet even if you have had celiac disease for a long time.  

Consider a second opinion about the drug your doctor prescribed for your osteoporosis.  There may be other options.  Be sure to weigh the risks vs. benefits.  I recall being devastated after my fractures.  I gave up cycling for a year and focused on gentle exercise.  But with healing, I got back on my bike.  ?

Edited August 25, 2019 by cyclinglady

[TGK112]

I was diagnosed with osteoporosis several years prior to my celiac diagnosis. In fact,  it was my bone doctor who suspected celiac and ordered the initial blood test. Despite going gluten free,  increasing exercise, taking vitamin D and calcium, my bone density was not improving. So I was put on Prolia about four or five years ago,  and there has been some improvement,  not as much as I would like,  but my doctor thinks it has been fairly substantial. The only caveat-- once on Prolia,  it is apparently quite difficult to discontinue. I have not had any side effects from Prolia and plan to be on it for the foreseeable future. 

[cyclinglady]

1 hour ago, TGK112 said:

I was diagnosed with osteoporosis several years prior to my celiac diagnosis. In fact,  it was my bone doctor who suspected celiac and ordered the initial blood test. Despite going gluten free,  increasing exercise, taking vitamin D and calcium, my bone density was not improving. So I was put on Prolia about four or five years ago,  and there has been some improvement,  not as much as I would like,  but my doctor thinks it has been fairly substantial. The only caveat-- once on Prolia,  it is apparently quite difficult to discontinue. I have not had any side effects from Prolia and plan to be on it for the foreseeable future. 

Good to know!  ?

[frieze]

On 8/25/2019 at 6:02 PM, Jennifer Starr said:

Might I add....... 

I insisted that my doctor check my calcium level before getting the Prolia shot which is recommended by the drug company. I had been and am currently taking a vitamin with 125% daily recommended allowance of Vitamin D3 but contained no calcium. I also (on purpose) had been getting extra sunlight to increase my vitamin D. Last week the doctor tested me for both vitamin D and calcium. My calcium was normal (even though I was not getting any supplement) but my vitamin D was very low.  I would have expected opposite results. 

I should be absorbing the vitamin D from my vitamin supplement but apparently I’m not. 

This whole thing isn’t very easy. 

not nearly enough of supplement, check out the vitamin D counsel... ~1000 units per day per 10 units you want to raise the level, check that out and confirm.