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Osteoporosis & Celiac


PME

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trents Grand Master

My guess would be you are still getting gluten from somewhere. Had to look up "pescetarian". That was a new one one for me. Do you have any concerns about heavy metal toxicity from eating fish as your main source of protein, besides dairy that is? By the way, dairy can cause villi blunting just like gluten for some people. But I don't think it would cause elevated tTG-IGA.


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RMJ Mentor
4 hours ago, PME said:

Sorry...another question...blood work from last week shows my Celiac number actually went UP.  Previously, it was 19. Now it's 21.4. Does this mean I am inadvertently ingesting gluten? Many thanks in advance.1222714164_ScreenShot2022-05-04at3_58_14PM.png.b0a21c4cb413df9e5f256cef6685b548.png

Celiac antibody results are not reported in absolute units, so cannot be compared from lab to lab.  (If you want me to explain more about units I can - just ask.  I used to develop tests similar to these and don’t know how much of a nerd to be on a forum).

For your earlier results, your result was 19, and positive was greater than 10. Your result was almost twice the positive limit.

Current results, yours is 21.4, but positive is greater than or equal to 15.  You are not anywhere near twice the positive limit.  So it’s impossible to tell for sure, not knowing the slope of the lab’s standard curve, but your antibodies MIGHT actually be going down!

 

PME Explorer
4 hours ago, trents said:

My guess would be you are still getting gluten from somewhere. Had to look up "pescetarian". That was a new one one for me. Do you have any concerns about heavy metal toxicity from eating fish as your main source of protein, besides dairy that is? By the way, dairy can cause villi blunting just like gluten for some people. But I don't think it would cause elevated tTG-IGA.

Actually, I eat relatively little dairy. Just Fage plain, fat-free yogurt - about 8 oz a day. And maybe a slice of cheese. I don't eat that much fish either, unfortunately. Maybe once a week. Usually seafood - farm raised clams. Hard to get decent fresh fish where we are now. I do eat poultry. Ground turkey once a week. Chicken breast once a week. Otherwise, my protein comes from vegetarian refried beans, buckwheat groats or tofu. I'm wondering whether the herbs or spices in my cabinet could be problematic... We did go to a restaurant a few days before blood test. I had a salad with blackened chickpeas and balsamic vinaigraite   dressing... I'm just stumped, really.

PME Explorer
21 minutes ago, RMJ said:

Celiac antibody results are not reported in absolute units, so cannot be compared from lab to lab.  (If you want me to explain more about units I can - just ask.  I used to develop tests similar to these and don’t know how much of a nerd to be on a forum).

For your earlier results, your result was 19, and positive was greater than 10. Your result was almost twice the positive limit.

Current results, yours is 21.4, but positive is greater than or equal to 15.  You are not anywhere near twice the positive limit.  So it’s impossible to tell for sure, not knowing the slope of the lab’s standard curve, but your antibodies MIGHT actually be going down!

 

Thanks, RMJ! It didn't occur to me that different labs had different scales to measure.  I didn't even notice the difference in range between the two labs! And it sure would be great to think my antibodies were actually declining if it meant I was doing something right! I would love to understand this better if you have a standard explanation and wouldn't have to spend a lot of time writing it!   So is the recommendation to try to repeat the test at the same lab at intervals?

 

 

23 minutes ago, RMJ said:

Celiac antibody results are not reported in absolute units, so cannot be compared from lab to lab.  (If you want me to explain more about units I can - just ask.  I used to develop tests similar to these and don’t know how much of a nerd to be on a forum).

For your earlier results, your result was 19, and positive was greater than 10. Your result was almost twice the positive limit.

Current results, yours is 21.4, but positive is greater than or equal to 15.  You are not anywhere near twice the positive limit.  So it’s impossible to tell for sure, not knowing the slope of the lab’s standard curve, but your antibodies MIGHT actually be going down!

 

 

trents Grand Master
38 minutes ago, PME said:

Thanks, RMJ! It didn't occur to me that different labs had different scales to measure.  I didn't even notice the difference in range between the two labs! And it sure would be great to think my antibodies were actually declining if it meant I was doing something right! I would love to understand this better if you have a standard explanation and wouldn't have to spend a lot of time writing it!   So is the recommendation to try to repeat the test at the same lab at intervals?

 

 

 

Herbs and spices can be sources of gluten cross-contamination ("CC") and it's not impossible that wheat could be used as a texturing agent in some spice products. Getting "glutened" a few days before a test would not likely generate enough antibodies to be detectable I don't think.

RMJ Mentor

Many lab results for blood tests are reported with units of a weight divided by a volume, for example milligrams per milliliter (mg/mL).  To report this way, individual results must be compared to results obtained with standards with known amounts of material.  Take total IgA antibody for example.  IgA can be highly purified from blood and measured to create a primary standard.  Then other secondary standards are made and compared in tests to the primary.  That way one doesn’t have to make the highly purified IgA repeatedly.

For celiac specific antibodies, no one has bothered to purify the tiny portion of IgA that reacts with Tissue Transglutaminase (TTG) to make standards. Instead of knowing how many milligrams or micrograms of TTG IgA antibody are in the standard, they just assign some number of arbitrary units.  The results are reported as units per milliliter (U/mL)  or in the case of your first test, EliA U/mL.  I would guess that EliA stands for ELISA - the abbreviation for the test technology (Enzyme Linked ImmunoAssay). 

Manufacturers of the tests still have primary and secondary standards, so within a lab/manufacturer the results can be compared from test to test, but one cannot compare between manufacturers, since each may assign their own units.

Therefore, as you stated, the recommendation is definitely to have followup results performed at intervals at the same lab.

PME Explorer
9 hours ago, RMJ said:

Many lab results for blood tests are reported with units of a weight divided by a volume, for example milligrams per milliliter (mg/mL).  To report this way, individual results must be compared to results obtained with standards with known amounts of material.  Take total IgA antibody for example.  IgA can be highly purified from blood and measured to create a primary standard.  Then other secondary standards are made and compared in tests to the primary.  That way one doesn’t have to make the highly purified IgA repeatedly.

For celiac specific antibodies, no one has bothered to purify the tiny portion of IgA that reacts with Tissue Transglutaminase (TTG) to make standards. Instead of knowing how many milligrams or micrograms of TTG IgA antibody are in the standard, they just assign some number of arbitrary units.  The results are reported as units per milliliter (U/mL)  or in the case of your first test, EliA U/mL.  I would guess that EliA stands for ELISA - the abbreviation for the test technology (Enzyme Linked ImmunoAssay). 

Manufacturers of the tests still have primary and secondary standards, so within a lab/manufacturer the results can be compared from test to test, but one cannot compare between manufacturers, since each may assign their own units.

Therefore, as you stated, the recommendation is definitely to have followup results performed at intervals at the same lab.

Thank you so much for this explanation!  Based on my very cautious behavior leading up to this latest test (and my careless Thanksgiving dinner consumption prior to the previous one!), my celiac number "should" have dropped, unless I'm unconsciously sabotaging my diet with, say, herbs/spices containing wheat products or cross contamination in my kitchen.  I'm wondering if my doctor will recommend that if I want to re-test, I do so in six months at the same lab??? Is that the standard interval?


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PME Explorer
9 hours ago, trents said:

Herbs and spices can be sources of gluten cross-contamination ("CC") and it's not impossible that wheat could be used as a texturing agent in some spice products. Getting "glutened" a few days before a test would not likely generate enough antibodies to be detectable I don't think.

Thanks for this, Trents. I guess it's time to throw out all my herbs/spices and start over!

RMJ Mentor
38 minutes ago, PME said:

Thank you so much for this explanation!  Based on my very cautious behavior leading up to this latest test (and my careless Thanksgiving dinner consumption prior to the previous one!), my celiac number "should" have dropped, unless I'm unconsciously sabotaging my diet with, say, herbs/spices containing wheat products or cross contamination in my kitchen.  I'm wondering if my doctor will recommend that if I want to re-test, I do so in six months at the same lab??? Is that the standard interval?

I don’t think there is a standard interval  but 6 months should be good.

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    • trents
      Okay, it does make sense to continue the gluten challenge as long as you are already in the middle of it. But what will change if you rule it out? I mean, you have concluded that whatever label you want to give the condition, many of your symptoms improved when you went gluten free. Am I correct in that? According to how I understand your posting, the only symptom that hasn't responded to gluten free eating is the bone demineralization. Did I misunderstand? And if you do test positive, what will you do different than you are doing now? You have already been doing for years the main thing you should be doing and that is eating gluten free. Concerning how long you should stay on the gluten challenge, how many weeks are you into it already?
    • WildFlower1
      I mean that I will be re-taking the celiac blood test again while I am currently on the gluten challenge right now, but not sure how many weeks more to keep going, to ensure a false negative does not happen. Thank you.
    • WildFlower1
      Thank you for your help, I am currently in the middle of the gluten challenge. A bit over 6 weeks in. At 4 weeks I got the celiac blood tests and that is when they were negative. So to rule out the false negative, since I’m in the middle of the gluten challenge right now and will never do this again, I wanted to continue consuming gluten to the point to make sure the blood tests are not a false negative - which I did not receive a firm answer for how many weeks total.    My issue is, with these blood tests the doctors say “you are not celiac” and rule it out completely as a potential cause of my issues, when the symptoms scream of it. I want to rule out this 30 year mystery for my own health since I’m in the middle of it right now. Thank you!
    • trents
      I am a male and had developed osteopenia by age 50 which is when I finally got dx with celiac disease. I am sure I had it for at least 13 years before that because it was then I developed idiopathic elevated liver enzymes. I now have a little scoliosis and pronounced kyphosis (upper spine curvature).  All of your symptoms scream of celiac disease, even if the testing you have had done does not. You may be an atypical celiac, meaning the disease is not manifesting itself in your gut but is attacking other body systems. There is such a thing as sero negative celiac disease. But you still have not given me a satisfactory answer to my question of why do you need a differential dx between celiac disease and NCGS when either one would call for complete abstinence from gluten, which you have already been practicing except for short periods when you were undergoing a gluten challenge. Why do you want to put a toxic substance into your body for weeks when, even if it did produce a positive test result for celiac disease, neither you or your doctors would do anything different? Regardless of what doctors are recommending to you, it is your body it is affecting not theirs and they don't seem to have given you any good justification for starting another gluten challenge. Where you live, are doctors kings or something?
    • WildFlower1
      Sorry to put it clearly, at 15, infertility started (tried to word it nicely) meaning menstruation stopped. Which is in correlation to celiac I mean. Thank you. 
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