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Questions about TTG Levels and trying to conceive

GlutenFreeFrizz
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GlutenFreeFrizz Rookie
GlutenFreeFrizz
Posted

Hi there all- I joined this group last night after getting some pretty frustrating news from my doctor. Long story short, I got my diagnosis in January 2021- my TTG levels were so high (121) they told me definitely had Celiac before even doing the endoscopy. I've been (what I thought was) meticulously gluten free since February 2021.

Whelp. I just got some bloodwork done this weekend, and my doctor reached out yesterday with some... not great news. Not only am I deficient in several vitamins (D3, B12) and Iron to the point where she has me on vitamins starting immediately, my TTG levels are still elevated (72). In her words, this means my Celiac "is not under optimal control."

But my husband and I were planning on going TTC in August/September for our first child. Now, it's looking like we might have to wait another SIX MONTHS. I know, healthy mama and baby are the priorities and if it guarantees a healthy pregnancy it's worth it but... still. We already have put this off by a year because of my diagnosis. Both of us are over thirty (I'm turning 32 next month, he's turning 33 soon after), and while we're still pretty young there is a long and heartbreaking history of fertility issues in my family- lots of miscarriages before healthy babies and between children. I can't help but feel like time is running out.

 

I could use some advice, perspective, success stories- anything to lift my spirits right now, because they're pretty "dark and twisty" at the moment! Thanks to everyone

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Wheatwacked Veteran
Wheatwacked
Posted

Common deficiencies with fertility and birth defects that are mostly ignored are choline which together with folate lowers the risk of neural tube defects and iodine

Iodine and fertility: do we know enough?. "Median urine iodine concentrations have been widely used as a biomarker of population iodine intake, with levels >300 µg/l considered excessive in adults and >500 µg/l considered excessive in pregnant women... In particular, as the fetus is entirely dependent on maternal T4 in early pregnancy, iodine deficiency in the first trimester is an especially vulnerable time" 

 Low choline levels in pregnant women raise babies' risk for brain and spinal-cord defects, study shows"Neural tube defects have become less common since the 1996 decision to fortify the U.S. food supply with folic acid, a B-vitamin shown to prevent the defects, but they have not disappeared."

 

GlutenFreeFrizz Rookie
GlutenFreeFrizz
Posted
  • Author
1 hour ago, Wheatwacked said:

Common deficiencies with fertility and birth defects that are mostly ignored are choline which together with folate lowers the risk of neural tube defects and iodine

Iodine and fertility: do we know enough?. "Median urine iodine concentrations have been widely used as a biomarker of population iodine intake, with levels >300 µg/l considered excessive in adults and >500 µg/l considered excessive in pregnant women... In particular, as the fetus is entirely dependent on maternal T4 in early pregnancy, iodine deficiency in the first trimester is an especially vulnerable time" 

 Low choline levels in pregnant women raise babies' risk for brain and spinal-cord defects, study shows"Neural tube defects have become less common since the 1996 decision to fortify the U.S. food supply with folic acid, a B-vitamin shown to prevent the defects, but they have not disappeared."

 

Thank you for the provided information! I'll have to read those articles carefully. It's curious you mention this, my older sister also has Celiac and her son required a surgery on his neural tubes as a toddler. I never knew that could be tied to Celiac!

trents Grand Master
trents
Posted

As Wheatwacked indicated, make sure you get plenty of folate as lack of it can result in neuro tube defects in the baby. My wife and I actually had this happen with one of her pregnancies and my daughter in law did as well.

What supplements are you currently taking? B12 and the entire B-vitamin group should be in your supplement routine as well as D3 and magnesium. We routinely recommend these things to celiacs who join the forum since celiac disease commonly produces vitamin and mineral deficiencies. Get a gluten-free high potency B-complex such as Costco's Kirkland or NatureMade line.

Wheatwacked Veteran
Wheatwacked
Posted

It is an everyone problem but Celiac Disease can exasperate the effect.  The choline problem started when it was advised to avoid eggs and red meat for heart health so that now only 10% of the western diet eat the DV for choline. Folate (beans are good) is deficient in the general population, it is why flour is fortified with Folic Acid. Celiac Disease complicates matters in that non gfd get deficient because of Celiac Disease caused malabsorption syndrome; and those on Gluten free diet miss out on the fortification. Double edge sword if you are not aware. A downside of folic acid supplementation is it may increase the risk of prostate cancer by 17%. ( I know, not your problem 😀).

The US intake of Iodine is one half today what it was in 1970 and though the general public is declared sufficient, in one study of child bearing aged women 66% were low in Iodine. Lack of Iodine can cause Cretanism. 80% of our Iodine is stored in the thyroid but the breasts, where it helps insure the suckling infant will get enough, is the second largest store. Did I mention an inverse relationship between iodine status and breast cancer? 

GlutenFreeFrizz Rookie
GlutenFreeFrizz
Posted
  • Author
5 hours ago, trents said:

As Wheatwacked indicated, make sure you get plenty of folate as lack of it can result in neuro tube defects in the baby. My wife and I actually had this happen with one of her pregnancies and my daughter in law did as well.

What supplements are you currently taking? B12 and the entire B-vitamin group should be in your supplement routine as well as D3 and magnesium. We routinely recommend these things to celiacs who join the forum since celiac disease commonly produces vitamin and mineral deficiencies. Get a gluten-free high potency B-complex such as Costco's Kirkland or NatureMade line.

Thankfully my doctor said my current folate levels are normal! Currently I'm taking B12 (1000mcg), Iron (325mg), and D3 (2000 IU), just started yesterday after getting her notes in! Couldn't believe how expensive they were. They are all NatureMade and Gluten free!

1 hour ago, Wheatwacked said:

It is an everyone problem but Celiac Disease can exasperate the effect.  The choline problem started when it was advised to avoid eggs and red meat for heart health so that now only 10% of the western diet eat the DV for choline. Folate (beans are good) is deficient in the general population, it is why flour is fortified with Folic Acid. Celiac Disease complicates matters in that non gfd get deficient because of Celiac Disease caused malabsorption syndrome; and those on Gluten free diet miss out on the fortification. Double edge sword if you are not aware. A downside of folic acid supplementation is it may increase the risk of prostate cancer by 17%. ( I know, not your problem 😀).

The US intake of Iodine is one half today what it was in 1970 and though the general public is declared sufficient, in one study of child bearing aged women 66% were low in Iodine. Lack of Iodine can cause Cretanism. 80% of our Iodine is stored in the thyroid but the breasts, where it helps insure the suckling infant will get enough, is the second largest store. Did I mention an inverse relationship between iodine status and breast cancer? 

It's strange how little I thought about these things prior to my diagnosis. I was surprised my folate levels were normal all things considered, but we do eat a lot of black beans and different kinds of beans in our household. My husband is a big "rice and beans" guy! You didn't mention the inverse relationship until the end but- eek!

trents Grand Master
trents
Posted

You might want to bump your D3 up from 2000IU to 4000IU. 2000IU isn't much and the MDR of most vitamins is really suboptimal. Wheatwacked will back me up on this.

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GlutenFreeFrizz Rookie
GlutenFreeFrizz
Posted
  • Author
8 hours ago, trents said:

You might want to bump your D3 up from 2000IU to 4000IU. 2000IU isn't much and the MDR of most vitamins is really suboptimal. Wheatwacked will back me up on this.

Thank you for all the insights and the advice! I really appreciate how helpful the community here has been- it's nice to have others around (even if it's over the internet) who've ridden this rodeo before and know so much! 

Wheatwacked Veteran
Wheatwacked
Posted

I have been taking 10,000 IU a day since 2015. Once I increased from 8,000 to 10,000 its effect on my Seasonal affective disorder was miraculous. In 2018 my blood level was 47 ng/ml. Now it is holding steady at 80 ng/ml. A lifeguard in summer is around 80.

Mayo Clinic Proceedings: Vitamin D Is Not as Toxic as Was Once Thought"Vitamin D intoxication associated with hypercalcemia, hyperphosphatemia, and suppressed parathyroid hormone level is typically seen in patients who are receiving massive doses of vitamin D in the range of 50,000 to 1 million IU/d for several months to years

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