Negative follow up biopsy but continue to have elevated tTg IgA Antibodies

[Acacia Voynar]

I am almost 2 years into a strict gluten free diet but my tTg IgA antibody levels continue to be elevated outside of the normal range (they are tested at least every 6 months).  I had a follow up endoscopy in January (1.5 years into diagnosis and gluten-free diet) which showed no inflammation and biopsies were all normal. I was told by the GI Dr that the damage from Celiac had all healed. At time of diagnosis, the GI Dr that performed the endoscopy (a different GI Dr) told me I had severe villi damage. 

My main question is.. if antibodies are elevated due to continued gluten exposure, could biopsies show healed villi and the endoscopy show no inflammation? A coloscopy was also preformed at the same time, with normal results.

I've been all over the place with medical professional during this journal and the many complications I've had from it.. I've seen multiple GI Dr's, primary care physicians, dietitians and an integrative medicine Dr.  No one agrees on elevated IgA levels and what it means for exposure to gluten (some say it could only mean exposure, others say it will take years to come down).  No one can provide me with an answer as to why the levels would be elevated but the biopsies normal.

For my tests, the tTG IgA antibodies standard range is <15.0 U/ml.  Here is the history of my test results:

5/12/23: 23.3

12/29/22: 25.8

11/1/22: 29.3

6/27/22: 54.9

1/3/22: 80.2

8/5/21: 536 **This was what lead to my diagnosis and was before going gluten free**

There's a lot more to my story and a ton of information I can provide, including ongoing abnormal labs and other diagnosis, but I was trying to keep this as short as possible to start.   

[knitty kitty]

It can take two years or more for antibody levels to normalize.  

Your antibody levels are consistently going down.  

You can try checking your Vitamin D level.  Vitamin D is instrumental in calming the immune system (besides other things).  

You're doing great.

[Acacia Voynar]

  On 6/19/2023 at 3:18 PM, knitty kitty said:

It can take two years or more for antibody levels to normalize.  

Your antibody levels are consistently going down.  

You can try checking your Vitamin D level.  Vitamin D is instrumental in calming the immune system (besides other things).  

You're doing great.

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Thank you!  My Vitamin D level was low during those May blood tests and my Dr had me start on a 5,000 IU daily supplement. 

[knitty kitty]

Do you remember the number?  

Mine was severely low, like single digits.  I took Vitamin D3.  (The doctor had prescribed Vitamin D 2, a synthetic form that the body cannot utilize well.)  

I took lots of Vitamin D3.  I ate them like M&M's actually because my body craved them so.  Really weird, yes, but it brought my Vitamin D level up quickly and I began to feel better quickly, too.  

High dose Vitamin D has been used in the past to correct rickets in children.  

DRIVING UP THE DOSE: IMPLICATIONS FOR HIGH-DOSE VITAMIN D THERAPY

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4824637/

[Acacia Voynar]

  On 6/19/2023 at 3:49 PM, knitty kitty said:

Do you remember the number?  

Mine was severely low, like single digits.  I took Vitamin D3.  (The doctor had prescribed Vitamin D 2, a synthetic form that the body cannot utilize well.)  

I took lots of Vitamin D3.  I ate them like M&M's actually because my body craved them so.  Really weird, yes, but it brought my Vitamin D level up quickly and I began to feel better quickly, too.  

High dose Vitamin D has been used in the past to correct rickets in children.  

DRIVING UP THE DOSE: IMPLICATIONS FOR HIGH-DOSE VITAMIN D THERAPY

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4824637/

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26.6 (normal range for the test was 30-100)

  On 6/19/2023 at 3:51 PM, Acacia Voynar said:

26.6 (normal range for the test was 30-100).  I'm taking the 5,000 IU daily in the form of a D3 supplement (Pure Encapsulations), not a prescription. 

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[knitty kitty]

You'll feel much better when your Vitamin D level gets up into the 80's where it is supposed to be.  At 80's level, Vitamin D can act like a hormone, like it's supposed to.  

Polynesian people who dress and live in traditional ways have Vitamin D levels between 80 and 120 nMol/L.  So that's where we want ours, too.  (But no island life. 😿)

I believe @Wheatwacked took four years to get his Vitamin D level up to 80 nMol/L.  

(Too long to feel better, in my book.)  

Since yours is so low, it won't hurt to take more than 5,000 IU a day.  Try one with each meal.

I take Naturewise 5000 IU.  

Edited June 19, 2023 by knitty kitty
Add more information

[Acacia Voynar]

  On 6/19/2023 at 4:04 PM, knitty kitty said:

You'll feel much better when your Vitamin D level gets up into the 80's where it is supposed to be.  At 80's level, Vitamin D can act like a hormone, like it's supposed to.  

Polynesian people who dress and live in traditional ways have Vitamin D levels between 80 and 120 nMol/L.  So that's where we want ours, too.  (But no island life. 😿)

I believe @Wheatwacked took four years to get his Vitamin D level up to 80 nMol/L.  

(Too long to feel better, in my book.)  

Since yours is so low, it won't hurt to take more than 5,000 IU a day.  Try one with each meal.

I take Naturewise 5000 IU.  

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Okay, thank you so much, I greatly appreciate your feedback!

[Wheatwacked]

Yes, I started 10,000 IU a day (thats 250 mcg) in early 2015 about 6 months after starting GFD on Thanksgiving 2014. In Sept 2018 (just looked it up) my 25-hydroxy vitamin D test was 44.7 ng/ml. that equals 112 nmol/L. By Aug 2021 it was 86.9 ng/ml (217 nmol/L).

Despite the fearmongering claims of terrible results of too much vitamin D I was inspired by multiple clinical trials of kidney transplant patients being given massive bolus doses of vitamin D in the 1,250,000 IU range with no difference in outcomes compared to patients who got 50,000 IU of D2 weekly.  I understand that only D2 can be given as a prescription, but the bioavailability of D2 is half that of D3.

My mental health began improving after only three or four days. I actually looked at the bottle one morning and said "This stuff is Sunshine in a bottle!" It ended a very long period of depression.   Doctor tests me every 3 months and it stays steady at 80 ng/ml (200 nmol/L). For comparison a study of Israeli lifeguards in August had them between 70 and 90 ng/ml.  that sort of indicates a homeostasis level.  My son an Ocean lifeguard in Florida was told last summer his vitamin D was low (<39 ng/ml or <98 nmol/L). Shows how effective sunscreen and their hats and clothing can block UV.

As my D increased I noticed my response to gluten became less violent.  Starting in 2012 I was on prednisone for fibromyalgia, arthritis, basically could not stand for more than 5 minutes at a time, before finding out I have Celiac, That is all gone now but I need to continue prednisone as a maintenance dose and that may explain why it took me so long to to get to homeostasis and continue to need so much daily to keep it there.  A misdiagnosis with permanent effect.

Then there is this from the Mayo Clinic Proceedings:

     "the Endocrine Society’s practice guidelines on vitamin D state that vitamin D intoxication is usually not observed until serum 25(OH)D levels are more than 150 ng/mL [375 nmol/L] .... The evidence is clear that vitamin D toxicity is one of the rarest medical conditions and is typically due to intentional or inadvertent intake of extremely high doses of vitamin D (usually in the range of >50,000-100,000 IU/d for months to years)."

[Acacia Voynar]

  On 6/21/2023 at 12:37 AM, Wheatwacked said:

Yes, I started 10,000 IU a day (thats 250 mcg) in early 2015 about 6 months after starting GFD on Thanksgiving 2014. In Sept 2018 (just looked it up) my 25-hydroxy vitamin D test was 44.7 ng/ml. that equals 112 nmol/L. By Aug 2021 it was 86.9 ng/ml (217 nmol/L).

Despite the fearmongering claims of terrible results of too much vitamin D I was inspired by multiple clinical trials of kidney transplant patients being given massive bolus doses of vitamin D in the 1,250,000 IU range with no difference in outcomes compared to patients who got 50,000 IU of D2 weekly.  I understand that only D2 can be given as a prescription, but the bioavailability of D2 is half that of D3.

My mental health began improving after only three or four days. I actually looked at the bottle one morning and said "This stuff is Sunshine in a bottle!" It ended a very long period of depression.   Doctor tests me every 3 months and it stays steady at 80 ng/ml (200 nmol/L). For comparison a study of Israeli lifeguards in August had them between 70 and 90 ng/ml.  that sort of indicates a homeostasis level.  My son an Ocean lifeguard in Florida was told last summer his vitamin D was low (<39 ng/ml or <98 nmol/L). Shows how effective sunscreen and their hats and clothing can block UV.

As my D increased I noticed my response to gluten became less violent.  Starting in 2012 I was on prednisone for fibromyalgia, arthritis, basically could not stand for more than 5 minutes at a time, before finding out I have Celiac, That is all gone now but I need to continue prednisone as a maintenance dose and that may explain why it took me so long to to get to homeostasis and continue to need so much daily to keep it there.  A misdiagnosis with permanent effect.

Then there is this from the Mayo Clinic Proceedings:

     "the Endocrine Society’s practice guidelines on vitamin D state that vitamin D intoxication is usually not observed until serum 25(OH)D levels are more than 150 ng/mL [375 nmol/L] .... The evidence is clear that vitamin D toxicity is one of the rarest medical conditions and is typically due to intentional or inadvertent intake of extremely high doses of vitamin D (usually in the range of >50,000-100,000 IU/d for months to years)."

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Thank you, I appreciate all that information! 

[Rogol72]

I agree with @Wheatwacked , when my Vitamin D levels drop, my celiac disease and DH is more reactive to CC and trace amounts of gluten. Low levels will alter mood and bones begin to ache. It's a critical nutrient for immune system modulation. Some people have genetic polymorphisms of Vitamin D and do not convert D3 to the active form very well. I take 4000iu at present to boost levels since I live in a northern climate. My levels need to be in the 80+ng/mL  or 150+ nmol/L range to feel well.