Osteoporosis & Celiac

[PME]

New here! I was told about ten years ago that I was gluten sensitive, so I went off gluten. That said, there were intervals when I definitely went "off the wagon" for weeks or months and then resumed a gluten-free diet. I was diagnosed with Celiac in Fall 2021 after seeing an endocrinologist for osteoporosis. Blood test showed me to be at 19 for gluten. Still not sure what this means. I was not told to avoid or consume gluten prior to blood work, so I'm wondering how accurate that number is. I still have not seen a gastroenterologist, though I did report my Celiac dx to them. In the mean time, we relocated to a new state about two hours away, where healthcare is difficult to obtain. Was it a mistake to not follow up immediately with GI? Should I request endoscopy? I am extremely nervous about endoscopy, because I do not want to do this without anesthesia. I understand they can do endoscopy and colonoscopy in same procedure, but I am not due for colonoscopy until 2024, so I'm not sure insurance would cover that procedure this soon.

[trents]

Do you have online access to that celiac blood test from 2021 or can you get them to mail you a hard copy? There is more than one test that can be run for celiac diseae and without reference ranges of what the lab uses to establish negative vs. positive results, even that one number is pretty useless.

Official guidelines for the blood antibody test is to be consuming at least two slices of wheat bread daily (or the equivalent) for 6-8 weeks before testing. For the endoscopy/biopsy that same amount for at least 2 weeks beforehand. Don't get tested until you are prepared to follow this guideline. It may be a waste of time and money otherwise.

But the real question is, do your symptoms improve when you go off gluten? Or, do you have symptoms? Some people don't and we call them "silent" celiacs. But osteoporosis is one of the definite signs of celiac disease, though it can be due to other things as well. Are you male or female?

[RMJ]

Do you have other risk factors for osteoporosis?  Or is this an unusual diagnosis for your sex/age/weight?

Different labs have different normal ranges for celiac tests because the units are not absolute.  Do you know the normal range for your test? Also, do you know which test was run?  There are several different antibody tests for celiac disease.

Were you on a gluten-free diet prior to the test?  That could definitely make a difference to your results - giving a negative when you do have celiac disease.

If you don’t want to have an endoscopy, you can always be gluten free without one.

[PME]

54 minutes ago, trents said:

Do you have online access to that celiac blood test from 2021 or can you get them to mail you a hard copy? There is more than one test that can be run for celiac diseae and without reference ranges of what the lab uses to establish negative vs. positive results, even that one number is pretty useless.

Official guidelines for the blood antibody test is to be consuming at least two slices of wheat bread daily (or the equivalent) for 6-8 weeks before testing. For the endoscopy/biopsy that same amount for at least 2 weeks beforehand. Don't get tested until you are prepared to follow this guideline. It may be a waste of time and money otherwise.

But the real question is, do your symptoms improve when you go off gluten? Or, do you have symptoms? Some people don't and we call them "silent" celiacs. But osteoporosis is one of the definite signs of celiac disease, though it can be due to other things as well. Are you male or female?

Thank you so much for responding, Trents! And thanks for test guidelines. I'm a female, 60-plus. My GI symptoms used to be silent, except for some brain fog. Over time, though, when I too much of an extended leap off of gluten, I'd start to get some mild GI symptoms. And now, I consistently have mild GI symptoms when I've unwittingly ingested it.

I have access to the online test results. 

BASIC METABOLIC PANEL: everything is within range; glucose a little high:

 

GLUCOSE. my value: 105 mg/dL.  standard range: 70 - 99 mg/dL

 

VIT D, 25-Hydroxy.    my value: 61 ng/mL.  standard range: 30 - 100 ng/mL

INTERPRETATION:
VITAMIN D STATUS 25 OH VITAMIN D
Deficiency <20 ng/mL
Insufficiency 20-29 ng/mL
Sufficiency 30-100 ng/mL
Toxicity >100 ng/mL
This test measures a total of both 25 OH D2 and 25 OH D3.

 

CELIAC WITH REFLEX

Tissue Transglutaminase IgA my value: 19.0 EliA U/ml.   standard range: <7.0 EliA U/mlH

Interpretation:
<7: Negative
7-10: Equivocal
>10: Positive

PTH.  my. value: 37.4 pg/mL. standard range: 12.0 - 88.0 pg/mL

Calcium. √value: 10.0 mg/dL.   standard range: 8.9 - 10.3 mg/dL

Phosphorus. My value: 3.3 mg/dL.  standard range: 2.4 - 4.7 mg/dL

 

[PME]

6 minutes ago, RMJ said:

Do you have other risk factors for osteoporosis?  Or is this an unusual diagnosis for your sex/age/weight?

Different labs have different normal ranges for celiac tests because the units are not absolute.  Do you know the normal range for your test? Also, do you know which test was run?  There are several different antibody tests for celiac disease.

Were you on a gluten-free diet prior to the test?  That could definitely make a difference to your results - giving a negative when you do have celiac disease.

If you don’t want to have an endoscopy, you can always be gluten free without one.

Thanks, RMJ! My mom, almost 88, has had osteoporosis for some time. She gets Prolea shots. Not convinced it's helped. She has had broken bones. (I have not, as an adult so far, broken anything.) My Ashkenazi Jewish heritage puts me in higher risk category. 

[trents]

PME,

Your tTG-IGA is definitely positive and that is especially significant in light of the fact that you may have been eating gluten free at the time. So, you need to get serious about consistently eating gluten free. It's not good enough to eat lower gluten or to be gluten free off and on. Especially with osteoporosis you need to double down on eating gluten free. Here is a primer of what that looks like:

It's an educational process. Gluten is hidden by terminology and found in food items you would never expect, like canned tomato soup. Reading all labels of processed food items is part of the gig.

The other thing that concerns me is your vitamin D level being insufficient. Vitamin D is essential to bone health, as is magnesium. I would definitely suggest you invest in a gluten free D3 supplement (5000IU daily) and a gluten free magnesium supplement. There are different forms of magnesium supplements and some are better absorbed than others. Magnesium gylcinate has good absorption. Being better absorbed will also lessen the possibility of it giving you loose stools. Costco's Nature Made line is a good choice for gluten-free vitamins and supplements.

[PME]

Since my celiac Dx in December, I have stayed religiously off gluten. I do read labels and try to purchase food products that are labeled gluten free. One thing I haven't done anything about yet is my packaged herbs/spices. Also, I wasn't aware of cosmetics being a real issue, nor is my home gluten free (I live with my husband; kids are grown.) I don't use the toaster, and I run things that have touched gluten through the dishwasher. BUT after scanning the doc you attached, I'm realizing this is not enough. I didn't think my vitamin D level was insufficient...I've been taking one 2000 U capsule of of D-3 (manuf'd by NOW vitamins) and one capsule of 100 MCG of K2 (from Nutricost) with breakfast -- and both again with dinner.  Both are gluten-free. I guess I could up my D3. I believe I recently ordered magnesium. Need to see if it's Magnesium glycinate. 

I'm never confident as to the "when" to take these vitamins though!

 

[trents]

Sorry about my statement concerning vitamin D insufficiency. I didn't read your test results carefully enough. According to that, you are not in the insufficient range.

Do you still eat out? That is a huge risk because of cross contamination in the restaurant kitchen. You know, things being cooked in the same pots, pans and on the same grills as wheat floured things, cut with the same knives, etc. Overall, it sounds like you are doing a lot of things correctly to protect yourself.

Edited April 25, 2022 by trents

[PME]

16 minutes ago, trents said:

Sorry about my statement concerning vitamin D insufficiency. I didn't read your test results carefully enough. According to that, you are not in the insufficient range.

Do you still eat out? That is a huge risk because of cross contamination in the restaurant kitchen. You know, things being cooked in the same pots, pans and on the same grills as wheat floured things, cut with the same knives, etc. Overall, it sounds like you are doing a lot of things correctly to protect yourself.

No worries about Vit D statement! I am just SO grateful for your insights! I don't eat out nearly as often as we used to. I try to be so careful and inquire about the extent of celiac-friendliness...but I'm never confident. 

Is there a substitute for GliadinX? it's out of stock on the mfr website, as well as Amazon and Walmart. 

[trents]

25 minutes ago, PME said:

No worries about Vit D statement! I am just SO grateful for your insights! I don't eat out nearly as often as we used to. I try to be so careful and inquire about the extent of celiac-friendliness...but I'm never confident. 

Is there a substitute for GliadinX? it's out of stock on the mfr website, as well as Amazon and Walmart. 

https://smile.amazon.com/s?k=gliadin+x&crid=247ID1NWWQO86&sprefix=glia%2Caps%2C239&ref=nb_sb_ss_ts-doa-p_1_4

I can't vouch for any of these products. Look for those who have the same active ingredient(s) as GliadinX and pay attention also to the concentrations of them.

[RMJ]

That Tissue Transglutaminase IgA value on  a gluten free diet plus GI symptoms definitely sounds like celiac disease.  

I have osteoporosis, but in addition to celiac disease I have other risk factors - post-menopausal female, weight (low), race (white), family history.  I’ve been taking (generic) Fosamax for a year and it seems to have stopped the bone loss.  Your vitamin D levels look good.  Do you eat much dairy?  If not, you may want to take a calcium supplement.  Blood levels of calcium don’t mean much because your body takes calcium from the bones to maintain blood levels.

Cosmetics aren’t an issue on the skin, just if you ingest them - which could be possible with lipstick.  A dishwasher should take care of gluten on dishes unless they’re really scratched up or porous.

Good luck with your celiac journey!  You had a good doctor who thought to test for it.

[PME]

27 minutes ago, RMJ said:

That Tissue Transglutaminase IgA value on  a gluten free diet plus GI symptoms definitely sounds like celiac disease.  

I have osteoporosis, but in addition to celiac disease I have other risk factors - post-menopausal female, weight (low), race (white), family history.  I’ve been taking (generic) Fosamax for a year and it seems to have stopped the bone loss.  Your vitamin D levels look good.  Do you eat much dairy?  If not, you may want to take a calcium supplement.  Blood levels of calcium don’t mean much because your body takes calcium from the bones to maintain blood levels.

Cosmetics aren’t an issue on the skin, just if you ingest them - which could be possible with lipstick.  A dishwasher should take care of gluten on dishes unless they’re really scratched up or porous.

Good luck with your celiac journey!  You had a good doctor who thought to test for it.

Actually, looking back, my blood was drawn for that test about a week after Thanksgiving, which turned out to be my last hurrah for gluten. I ate "normal" pie, stuffing ,etc. I wonder how different the numbers would have looked had I not so recently gone gluten crazy...

I just now spoke with my gastroenterologist. She wants to repeat the bloodwork, since it's been 6 months. She feels pretty solid about my celiac dx, because the number is so high, and she thinks we can wait until my next colonscopy if I do want to check things out with endoscopy. 

RMJ, I've been told for years by my GYN that I should consider going on Fosamax, and I declined. (I am someone who has tried to avoid meds as much as possible, as insane as that sounds.) I'm glad to know you're seeing results from Fosamax!  I stopped drinking cow's milk about 15-plus years ago and substituted almond milk and now oat milk. I do eat Fage unsweetened nonfat yogurt EVERY day. I will eat one slice of cheese daily. All in the name of calcium intake! I have a high calcium score, unfortunately, so my cardiologist has recommended against calcium supplements. I'm pescetarian but will periodically eat poultry, but there's no red meat in my diet. 

Thank you, RMJ, for your kind wishes and your generous thoughts!

[RMJ]

6 minutes ago, PME said:

Actually, looking back, my blood was drawn for that test about a week after Thanksgiving, which turned out to be my last hurrah for gluten. I ate "normal" pie, stuffing ,etc. I wonder how different the numbers would have looked had I not so recently gone gluten crazy...

I just now spoke with my gastroenterologist. She wants to repeat the bloodwork, since it's been 6 months. She feels pretty solid about my celiac dx, because the number is so high, and she thinks we can wait until my next colonscopy if I do want to check things out with endoscopy. 

RMJ, I've been told for years by my GYN that I should consider going on Fosamax, and I declined. (I am someone who has tried to avoid meds as much as possible, as insane as that sounds.) I'm glad to know you're seeing results from Fosamax!  I stopped drinking cow's milk about 15-plus years ago and substituted almond milk and now oat milk. I do eat Fage unsweetened nonfat yogurt EVERY day. I will eat one slice of cheese daily. All in the name of calcium intake! I have a high calcium score, unfortunately, so my cardiologist has recommended against calcium supplements. I'm pescetarian but will periodically eat poultry, but there's no red meat in my diet. 

Thank you, RMJ, for your kind wishes and your generous thoughts!

I also try to avoid meds and I have a PhD in Pharmacology!  I resisted Fosamax for years when doctors wanted to prescribe it for osteopenia.  But when my Dexascan values finally hit osteoporosis and my doctor started listing my risk factors, I read up on the Fosamax mode of action and finally gave in. It is better than the first generation bisphosphonates.

[PME]

1 hour ago, trents said:

https://smile.amazon.com/s?k=gliadin+x&crid=247ID1NWWQO86&sprefix=glia%2Caps%2C239&ref=nb_sb_ss_ts-doa-p_1_4

I can't vouch for any of these products. Look for those who have the same active ingredient(s) as GliadinX and pay attention also to the concentrations of them.

Thank you for this! I often look for substitutes that have the same active ingredient as what I'm seeking, but I wasn't sure if GliadinX was some kind of "special formulation." 

[PME]

50 minutes ago, RMJ said:

I also try to avoid meds and I have a PhD in Pharmacology!  I resisted Fosamax for years when doctors wanted to prescribe it for osteopenia.  But when my Dexascan values finally hit osteoporosis and my doctor started listing my risk factors, I read up on the Fosamax mode of action and finally gave in. It is better than the first generation bisphosphonates.

Well, RMJ, you may have been the one to finally sell me on Fosamax... ! Have you experienced any side effects? Have you fallen at all (hopefully not!!!)? My dexa values finally showed osteoporosis in september 2021 (lumbar spine and right hip femoral neck). I was heartbroken when two of my doctors told me I should NOT ride a bicycle (because of falling risk)! But there are far worse things in life.

[RMJ]

25 minutes ago, PME said:

Well, RMJ, you may have been the one to finally sell me on Fosamax... ! Have you experienced any side effects? Have you fallen at all (hopefully not!!!)? My dexa values finally showed osteoporosis in september 2021 (lumbar spine and right hip femoral neck). I was heartbroken when two of my doctors told me I should NOT ride a bicycle (because of falling risk)! But there are far worse things in life.

I haven’t experienced any side effects.  I’ve been taking it for 1-1/2 years so far.  I haven’t fallen all the way to the ground - my dog sometimes trips me but I recover my balance before hitting the ground. I think that “do you have a pet” should be one of the questions doctors ask when evaluating fall risks.

Your caution is warranted. There definitely can be severe side effects - like femur and jaw fractures - but in a small number of people.  I think those may be more common with some of the injectables. 

[PME]

Glad you haven't fallen. It's easy to see how beloved pets could be a "tripping hazard. 

So very grateful for all the generous help on this site!! 

[RMJ]

6 hours ago, PME said:

No worries about Vit D statement! I am just SO grateful for your insights! I don't eat out nearly as often as we used to. I try to be so careful and inquire about the extent of celiac-friendliness...but I'm never confident. 

Is there a substitute for GliadinX? it's out of stock on the mfr website, as well as Amazon and Walmart. 

The company that makes GliadinX has gotten the raw ingredients and should have it available by early to mid-May, per their Facebook page.

[PME]

12 hours ago, RMJ said:

The company that makes GliadinX has gotten the raw ingredients and should have it available by early to mid-May, per their Facebook page.

Thank you. I signed up on their FB page.  Have you tried it? If so, has it worked for you?

 

[RMJ]

6 hours ago, PME said:

Thank you. I signed up on their FB page.  Have you tried it? If so, has it worked for you?

 

I use it when I have to eat out (when I visit my father) but I’m a silent celiac so can’t say from first hand experience if it works or not.  I’ve read some of the scientific studies and feel good about it from them.

[PME]

1 minute ago, RMJ said:

I use it when I have to eat out (when I visit my father) but I’m a silent celiac so can’t say from first hand experience if it works or not.  I’ve read some of the scientific studies and feel good about it from them.

Good to know. As a silent celiac myself, that's how I'm hoping to use it -- for dining at restaurants and at others' homes. I was sorry to learn that it doesn't really prevent or repair damage, but at least it mitigates symptoms for those who are prone to have them.

[RMJ]

54 minutes ago, PME said:

Good to know. As a silent celiac myself, that's how I'm hoping to use it -- for dining at restaurants and at others' homes. I was sorry to learn that it doesn't really prevent or repair damage, but at least it mitigates symptoms for those who are prone to have them.

It should prevent damage that would otherwise be caused by the contaminating amounts of gluten in the meal eaten along with taking it.

Some people, including doctors, are against it because it doesn’t cure celiac disease, or because they think people will take it and not try to be gluten free. I think us celiac patients are smart enough to use it appropriately!

[PME]

17 minutes ago, RMJ said:

It should prevent damage that would otherwise be caused by the contaminating amounts of gluten in the meal eaten along with taking it.

Some people, including doctors, are against it because it doesn’t cure celiac disease, or because they think people will take it and not try to be gluten free. I think us celiac patients are smart enough to use it appropriately!

Agreed - any celiac patient who is paying attention to and cares about what might or might not harm or be helpful would use it appropriately. And judging from their comments on their FB page, the manufacturer seems very responsible insofar as not making false claims about their product being some kind of miracle cure.

[Wheatwacked]

On 4/26/2022 at 2:29 PM, RMJ said:

Some people, including doctors, are against it because it doesn’t cure celiac disease,

Insulin doesn't cure diabetes either, just helps people live with it. 

[PME]

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.