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Need Help With Tests Results Please


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#61 Takala

 
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Posted 11 April 2013 - 02:00 PM

A good plan.  :)


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#62 GottaSki

 
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Posted 11 April 2013 - 04:31 PM

A great plan...make sure you keep a list of improved symptoms -- I still think High DGP-IgG together with symptom improvement is Celiac Disease -- but that is just my opinion -- the label doesn't really matter -- should you have family or friends that say things such as == "well, you are JUST intolerant" -- hold firm -- gluten has made your body attack itself in the past -- a tiny bit will trigger a similar or more severe reaction.

 

I am thankful you are through with your testing -- you did great and worked with your doctor -- all wonderful things :)

 

Hang out and let us know how it goes.


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#63 powerofpositivethinking

 
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Posted 16 April 2013 - 04:58 PM

Lisa, I agree about the High DGP score indicating celiac.  From everything I've read, if I had gluten intolerance vs. celiac disease, I would not be producing any antibodies against gluten, but I feel like a dog chasing its tail :P  Too many things point to celiac...except the negative biopsy  :mellow:

 

Mushroom posted a great article in another thread of an interview with Dr. Fasano http://www.glutenfre...o_interview.pdf

 

"We can no longer call celiac disease a gluten sensitive enteropathy, which means the gold standard is the biopsy. To me it

is not gold anymore. I don’t know if it is even silver or bronze. I believe it is copper."  
 
Or when he says he'll diagnose celiac as long as four of the five following criteria are met: 
"One, you have to have symptoms we know are related to celiac disease— diarrhea, anemia, whatever.
Two, you have to have the autoantibodies we use for diagnosis—anti- tissue transglutaminase and antiendomysial antibodies.
Three, you have to have HLA-DQ2 and/or HLA-DQ8.
Four, the biopsy shows damage.
Five, your symptoms have to resolve when you go on a gluten free diet."
 
**Since through my wonderful math skills  ;) this article was published in 2010, my guess that DGP wasn't included is because it wasn't widely in use yet in the US?  Although I still am in search of a layman's definition of what and how a deamidated gliadin peptide actually is formed, I did gather that it is an autoantibody as well.  Can anyone confirm that it definitely is?
 
Other oddities...at my appointment my GI doctor still thought it was odd that I had low Vitamin D.  In the newest issue of Gluten Free Living in the article titled In Your Bones, it's stated, "People with gluten intolerance do not have the same increased risk for osteoporosis as those who have celiac disease because they don't have problems absorbing nutrients, according to Kirby.  As a result they don't have the same Vitamin D and calcium deficiencies as celiac disease patients."  I don't have calcium deficiency, but there's my vitamin D deficiency, and what about the vitamin K deficiency...both seemed to be linked to bone health, but the GI doc didn't think a bone scan was needed.
 
Finally, the one that I think is my most frustrating, is the allergy I've developed to nickel/silver.  I've never been allergy tested, but I am thinking it would be a good idea at this point.  Why not :P  I'm an elementary music teacher, and I love what I do, but unfortunately a lot of instruments are made out of a nickel/silver combo.  My hands and lips would get red, and before I realized what was causing the reaction, it would develop into angular cheilitis, which would be painful when trying to play my French horn.  Now I play on a gold plated mouthpiece, and my lips are no longer irritated.  However, my ears turn red when wearing nickel/silver earrings.  I found another article that on p. 10 and 11 in section 5, table 5 that shows patients with allergic reactions to nickel just happen to have an increase of carrying the DQ2 and DQ8 genes, but yet my GI doc didn't think it was necessary to run the genetic tests since it doesn't aid in the diagnosis process in his view.  here's a link to that article https://docs.google....OIxKW4_Am5vkOyQ
 
my doctor has been great, but I really wish he would just order the genetic test for me.  maybe I'll try and ask him again when I go in June.  maybe I'm going overboard thinking about a bone scan, but those are my thoughts  :)
 
 

A great plan...make sure you keep a list of improved symptoms -- I still think High DGP-IgG together with symptom improvement is Celiac Disease -- but that is just my opinion -- the label doesn't really matter -- should you have family or friends that say things such as == "well, you are JUST intolerant" -- hold firm -- gluten has made your body attack itself in the past -- a tiny bit will trigger a similar or more severe reaction.

 

I am thankful you are through with your testing -- you did great and worked with your doctor -- all wonderful things :)

 

Hang out and let us know how it goes.


  • 0

Diagnosed with celiac disease, but my fat malabsoption, EPI and Vitamin K deficiency have finally cleared themselves up do to the help from Creon!

Thankful for all the help I've received from members on this board!

Happy to have answers  :) 


#64 mushroom

 
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Posted 16 April 2013 - 05:46 PM

I, too, am very nickel reactive.  I had to have several crowns in my mouth which were porcelain over nickel replaced and ended up letting my pierced ears close up when all metals were a problem.

 

You can order the genetic testing through Enterolab if it is that important for you. :)

 

And a follow-up DEXA scan was one of the first things I did upon discovery of my low D.  I don't know if I am celiac or NCGI.


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#65 powerofpositivethinking

 
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Posted 25 April 2013 - 05:10 PM

posting a small victory!  do you know when you do ab exercises and you feel that lift from up under?  I can finally feel that again, and it's been sooooo long  :) the bloating is much better, as is the reflux.  I am on the path to bathroom regularity, and that makes me soooooo happy!!!  I am trying to get back into exercising, and I finally have more energy.  I tried to eat dairy again the other day, and then I got bone, joint and muscle pain...not ready for dairy yet  :wacko: i was feeling a little too hopeful  ;)

 

my job does health screenings as part of our benefits, and I got that done today, so I thought I'd add those results here:

 

I finally had to see that I do fall into the BMI category of overweight <_<, but at least now, I have some energy to exercise, I just need to be careful to not overdo it.

 

My numbers:

Total Cholesterol: 135 mg/dl  (At first I thought this was great, but then I read that with this level that qualifies me for hypocholesterolemia. any insight on this?)

HDL: 52 mg/dl (in the normal range, not optimal, but close)

LDL: Was so low that the machine registered N/A, but the nurse told me that was a good thing.

TC/HDL Ratio: 2.6

Total Triglycerides: machine only measured down to 45, so my result was <45.  again, I was told this is great.

Fasting Glucose: 77

 

My BP was 137/88, but we discussed my white coat syndrome, and the fact that my bp is always good at home.

 

I was thinner, but when I started getting constipated, I realized eating a large amount of sugar would help to move my system along, but then I would feel even more bloated, which led to not wanting to exercise, and the snowball effect began.

 

I was thinking about going to an allergist to see if I have any other intolerances, but then I thought I'd give the gluten/dairy free diet a good three month try.  My hands still get really red and dry after eating certain foods, and I'm just trying to figure out more of my triggers.  

 

I was thinking of trying paleo for awhile, and seeing if that agrees with me.  any thoughts?  


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Diagnosed with celiac disease, but my fat malabsoption, EPI and Vitamin K deficiency have finally cleared themselves up do to the help from Creon!

Thankful for all the help I've received from members on this board!

Happy to have answers  :) 


#66 GottaSki

 
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Posted 25 April 2013 - 10:17 PM

I like the idea of giving strict gluten/dairy free a good three months and then re-evaluate.  Making too many changes within a short time leads to confusion - IMHO.

 

So glad to hear of your improvement thus far....oh I don't see anything of concern with the tests you listed...especially with your body adjusting to your new food choices.

 

Hang in there -- keep putting one foot in front of the other...you'll get there :)

 

Edited to add....Paleo may be a good choice...but do give it some thought -- say about three months while you wait and see what the results form removing gluten/dairy are.


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#67 frieze

 
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Posted 26 April 2013 - 02:44 AM

posting a small victory!  do you know when you do ab exercises and you feel that lift from up under?  I can finally feel that again, and it's been sooooo long  :) the bloating is much better, as is the reflux.  I am on the path to bathroom regularity, and that makes me soooooo happy!!!  I am trying to get back into exercising, and I finally have more energy.  I tried to eat dairy again the other day, and then I got bone, joint and muscle pain...not ready for dairy yet  :wacko: i was feeling a little too hopeful  ;)

 

my job does health screenings as part of our benefits, and I got that done today, so I thought I'd add those results here:

 

I finally had to see that I do fall into the BMI category of overweight <_<, but at least now, I have some energy to exercise, I just need to be careful to not overdo it.

 

My numbers:

Total Cholesterol: 135 mg/dl  (At first I thought this was great, but then I read that with this level that qualifies me for hypocholesterolemia. any insight on this?)

HDL: 52 mg/dl (in the normal range, not optimal, but close)

LDL: Was so low that the machine registered N/A, but the nurse told me that was a good thing.

TC/HDL Ratio: 2.6

Total Triglycerides: machine only measured down to 45, so my result was <45.  again, I was told this is great.

Fasting Glucose: 77

 

My BP was 137/88, but we discussed my white coat syndrome, and the fact that my bp is always good at home.

 

I was thinner, but when I started getting constipated, I realized eating a large amount of sugar would help to move my system along, but then I would feel even more bloated, which led to not wanting to exercise, and the snowball effect began.

 

I was thinking about going to an allergist to see if I have any other intolerances, but then I thought I'd give the gluten/dairy free diet a good three month try.  My hands still get really red and dry after eating certain foods, and I'm just trying to figure out more of my triggers.  

 

I was thinking of trying paleo for awhile, and seeing if that agrees with me.  any thoughts?  

I think that chol. is right on the "cusp", yes?  How is your Vit D level, I think if you bring up your D, the "good" chol, may come up a few points......


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#68 powerofpositivethinking

 
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Posted 27 April 2013 - 06:54 AM

ok here's some more of my deductive reasoning skills of why I believe I have celiac vs. gluten intolerance.  hopefully it seems logical, or at the very least...entertaining :lol: positive is my HDL is pretty good!

 

Warning:  I searched for pub med articles to back my ideas, but unfortunately I had a hard time finding studies about too low cholesterol and triglycerides, so I linked in websites and one pub med article I thought valid.  Take it for what it's worth  ;) There aren't many studies regarding low cholesterol and triglycerides, and in fact the woman doing my screening said my numbers looked great and that was that.  It seems the medical world is happy when numbers are low, but if too high numbers can cause problems, surely too low numbers can indicate potential problems as well.

 

 

I think the human body is amazing  :rolleyes:   I have been reading more on cholesterol, and although I've come across much lower total cholesterol levels than my own, I've found multiple sources that anything below 160 mg/dl is considered too low, though to be fair there was one source that said below 120 mg/dl was too low.  In one reading it said the true optimal range was 180-200 mg/dl.  Mine was 135 mg/dl.   Also with triglycerides, I eat plenty of fat and carbs, in fact I ate chocolate the night before my screening, so why are they so low?  I keep coming across malabsorption as a problem if cholesterol and triglycerides are too low, even if you are already eating enough fat and cholesterol in your diet.  

 

Every morning I eat two large eggs, yolk and all  :P  this was one site I came across in my reading, and is worth a read  :)  http://napervillebbt...-be-too-low.htm

 

Also I came across a few things that discussed Vitamin D and low cholesterol like the fact that in order to synthesize vitamin D from sunlight, you need adequate cholesterol levels.  http://www.jigsawhea...sterol-symptoms

oh and depression and anxiety are not only linked to Vitamin D deficiency, but also low cholesterol.  who knew!!

 

awhile back, I realized I wasn't eating enough fat and thought maybe that was contributing to my constipation, so I started adding in olive oil and avocados, but that addition didn't alleviate the constipation problem, which led me to consider other causes like the possibility of gluten.  

 

since I have trouble digesting coconut flakes and nuts, which are both high in fat, I eat plenty of fat, but still have low cholesterol and triglycerides, I think partial fat malabsorption is part of my problem brought on from inflammation of gluten and dairy  :blink:  that would help to explain low levels of Vitamins D and K.  even though I have trouble with coconut flakes, coconut water agrees with me, and I am thinking of buying coconut oil to use in cooking since I keep reading it is the easiest fat to digest for your digestive system.  I think the high amount of fiber in coconut flakes and nuts is irritating to my digestive tract, and maybe the oils would be better for me since I need fats my body will digest more easily, so I can bring my Vitamin K and D levels up.  thoughts?

 

I think somewhere in my intestines, there is malabsorption going on, but that part wasn't visible during my scope and wasn't part of my biopsy.

 

I may have trouble digesting fat, but calories don't seem to be a problem  :P

 

Here are my screening results from the past few years (all numbers are mg/dl):

 

                                          Total  Cholesterol     HDL     TC/HDL     LDL     Total Triglycerides  

 

October 2010 (Fasting)            171                     52          3.3           96        116

 

April 2012 (Non-fasting)           153                    60           2.5          -           -

 

April 2013 (Fasting)                  135                   52            2.6        N/A meant LDL under 100    N/A meant triglycerides less than 45

 

ok that's enough thinking for me in one day.  it's the weekend.  Time to get outside, and enjoy the nice weather!!

I like the idea of giving strict gluten/dairy free a good three months and then re-evaluate.  Making too many changes within a short time leads to confusion - IMHO.

 

So glad to hear of your improvement thus far....oh I don't see anything of concern with the tests you listed...especially with your body adjusting to your new food choices.

 

Hang in there -- keep putting one foot in front of the other...you'll get there  :)

 

Edited to add....Paleo may be a good choice...but do give it some thought -- say about three months while you wait and see what the results form removing gluten/dairy are.

 

Lisa, I tend to be a black and white kind of girl, and need to linger more in the grey zone sometimes  :)  i do think paleo would be beneficial for me, but right now I think a better choice would be to cut back on the grains instead of cutting them out completely.

 

 

 

I think that chol. is right on the "cusp", yes?  How is your Vit D level, I think if you bring up your D, the "good" chol, may come up a few points......

 

frieze, my GI doctor gave me a script to get vitamins D, K and the celiac panel tested again in June.  However, I think I will just be getting Vitamin D tested in May because my ob/gyn told me they wanted to retest my Vitamin D level again in three months, and my appointment was in February, so it's almost time.  For my lab, 30 was the low cutoff, and I had a 25.3.  Currently, I am taking 2000 iu of Vitamin D3 by itself, and there is also 1000 iu in my multi, so I expect the results to go up, but I will post when I get tested again  :rolleyes:  I was also going to ask if they would order the TPO test as well, even though my thyroid levels were in the normal range.  


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Diagnosed with celiac disease, but my fat malabsoption, EPI and Vitamin K deficiency have finally cleared themselves up do to the help from Creon!

Thankful for all the help I've received from members on this board!

Happy to have answers  :) 


#69 Deaminated Marcus

 
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Posted 27 April 2013 - 09:17 AM

Hi powerofpositivethinking...

 

When you get tested for vitamin D,  make sure it's both D.25 and D 1.25

My D.25 was low normal and my D 1.25 was over the limit.

D 1.25 is the active form your body makes.

Vitamin D is actually a steroid hormone.

I cringe whenever I hear TV doctors saying to take vitamin D because mine was too high.

I stopped taking my multi vitamin and will be tested again this summer.

 

 

About the quote from the doctor above:

I didn't agree with his criteria that a person has to have obvious symptoms like diareah and anemia because I read in celiac books that most people are asymptomatic.

 

 

About your question about how can you have a positive DGP-IgG but a negative biopsy, I read in my Celiac book that some people have damage to the small intestine below the duodenum where the endoscope can't reach.

 

 

But my other theory is what I read about the gluten added to whole wheat bread and hot dogs being already deaminated which made me wonder if if that can create a direct immune response to the deaminated peptide without the gluten being deaminated first by the immune response.  

 

 

When tTG-gliadin undergoes hydrolysis (steals a water to cut the two apart), the result is deamidated gliadin. Deamidated gliadin peptides are more inflammatory relative to natural peptides. Deamidated gliadin is also found in foods that have added gluten, such as wheat bread, food pastes.

 (source: http://en.wikipedia....immunochemistry


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#70 powerofpositivethinking

 
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Posted 30 April 2013 - 03:12 AM

hi deaminated marcus,

 

that's what i'm having a hard time letting go of since I had the positive score, but negative biopsy.  My GI did make the comment saying damage could have been farther down the intestine, but since the "gold standard" in diagnosing is the biopsy, and mine was negative, I'm told I have gluten intolerance vs. celiac.

 

i found this article regarding cholesterol absorption, and maybe my damage is in the jejunum http://www.ncbi.nlm....pubmed/15102882  my iron level and duodenum looked good, and since my B-12 level is in range, it makes me think my ileum is good, but since Vitamin D and K and cholesterol are low, maybe it's my jejunum.

 

Since it was a health screening and the equipment could not completely register my numbers, my total cholesterol could actually be lower than the calculated value, since the calculated value used 45 as my triglyceride number.  In Dr. Green's book he writes, "Prior to diagnosis, the cholesterol level of most people with celiac disease is low.  This occurs mainly because they are not properly absorbing fat and cholesterol in the small intestine.  As the gut heals, the picture changes."

 

on another note, I thought yesterday was my last visit to the dentist for awhile, but turns out it was just to get the temporary crown, and I get the permanent one in a few weeks  <_<  he looked at my x-rays again, and now thinks maybe I wasn't allergic to the material, but maybe the trauma of working on the tooth and putting in the filling last year caused the nerve to die off.  i think I may have gotten some gluten yesterday at my appointment too because my stomach was awfully rumbly last night and I was gassy, i had discomfort in my back and stomach this morning, and it was a little harder to use the restroom this morning, but the positive is I wasn't completely stopped up!  I do have it notated in my chart to use gluten-free products, but I'm thinking that something slipped in.  

 

today is a new day!

 

 

 

 

About your question about how can you have a positive DGP-IgG but a negative biopsy, I read in my Celiac book that some people have damage to the small intestine below the duodenum where the endoscope can't reach.

 


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Diagnosed with celiac disease, but my fat malabsoption, EPI and Vitamin K deficiency have finally cleared themselves up do to the help from Creon!

Thankful for all the help I've received from members on this board!

Happy to have answers  :) 


#71 frieze

 
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Posted 30 April 2013 - 04:42 AM

Hi powerofpositivethinking...

 

When you get tested for vitamin D,  make sure it's both D.25 and D 1.25

My D.25 was low normal and my D 1.25 was over the limit.

D 1.25 is the active form your body makes.

Vitamin D is actually a steroid hormone.

I cringe whenever I hear TV doctors saying to take vitamin D because mine was too high.

I stopped taking my multi vitamin and will be tested again this summer.

 

 

About the quote from the doctor above:

I didn't agree with his criteria that a person has to have obvious symptoms like diareah and anemia because I read in celiac books that most people are asymptomatic.

 

 

About your question about how can you have a positive DGP-IgG but a negative biopsy, I read in my Celiac book that some people have damage to the small intestine below the duodenum where the endoscope can't reach.

 

 

But my other theory is what I read about the gluten added to whole wheat bread and hot dogs being already deaminated which made me wonder if if that can create a direct immune response to the deaminated peptide without the gluten being deaminated first by the immune response.  

 

 

When tTG-gliadin undergoes hydrolysis (steals a water to cut the two apart), the result is deamidated gliadin. Deamidated gliadin peptides are more inflammatory relative to natural peptides. Deamidated gliadin is also found in foods that have added gluten, such as wheat bread, food pastes.

 (source: http://en.wikipedia....immunochemistry

calcitrio, D 1.25, l is a renal hormone, whose effects relate to blood levels of calcium.


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#72 nvsmom

 
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Posted 30 April 2013 - 06:00 AM

Low triglycerides and cholesterol is fairly common amoungst celiacs. Mine are below, or just at the bottom end, of the normal reference ranges.  Sometimes I wonder if it would be lower if not for my Hashimoto's which tends to cause high cholesterol and triglycerides.  I did a bit of reading on it, and low numbers appear not to be a large problem; I got the impression that if it got too low it could affect some pathways in the body... it was hard to find details.

 

I don't put much stock into triglycerides or cholesterol numbers. It seems their link to heart disease is tenuous and grows weaker with increased research.  I have read that some celiacs' levels go up after being on the gluten-free diet for a while; their cholesterol is still low but it goes up a bit.

 

Best wishes.


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#73 Deaminated Marcus

 
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Posted 30 April 2013 - 06:43 AM

Hello powerofpositivethinking,

 

In a Celiac book by a Dr Burns that I got from the library... in the children's section so I don't know if applies to you...

he says that positive blood tests but with no villi damage is classified as Latent or potential celiac.

 

I'm still on my gluten challenge and feeling worse and worse but my celiac panel came back negative.

I'm seeing a gastro doctor soon and I hope he investigates.

 

If I had a positive DGP-IgG I'd be jumping with joy as it would explain my medical problems.


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#74 Deaminated Marcus

 
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Posted 30 April 2013 - 08:06 AM

calcitrio, D 1.25, l is a renal hormone, whose effects relate to blood levels of calcium.

 

"Bioactive vitamin D or calcitriol is a steroid hormone"

 

source: http://www.vivo.colo...o/vitamind.html


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#75 frieze

 
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Posted 30 April 2013 - 12:21 PM

"Bioactive vitamin D or calcitriol is a steroid hormone"

 

source: http://www.vivo.colo...o/vitamind.html

yes, I was saying that it isn't the be all, end all.  it is separate, having to do with the bone growth aspect of D. and is usually followed in someone with kidney disease or parathyroid issues.


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