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16 year old daughter just diagnosed with Celiac and potentially POI

Maureen1
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Maureen1 Newbie
Maureen1
Posted

My 16 year old daughter was recently diagnosed with Celiac and potentially Premature Ovarian Insufficiency.  Her blood work indicated her FSH level was 100 which I know is seriously high.  She has been gluten free now for one month but they want to retest her FSH level to receive a diagnosis for POI.  I'm completely devastated for my daughter to think she will never be able to have children.  I'm wondering if anyone has experienced their FSH level normalizing once they were gluten free from such a high FSH level.  Thank you!

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Scott Adams Grand Master
Scott Adams
Posted

I'm really sorry to hear about your daughter's diagnosis, and I can imagine how overwhelming this must feel for both of you. While I don't have personal experience, I do know that there can be a strong connection between celiac disease and hormone imbalances, and going gluten-free can sometimes help regulate these systems over time.

In some cases, high FSH levels in people with celiac disease have been linked to nutrient deficiencies or inflammation caused by gluten, and once the body starts healing on a strict gluten-free diet, things can improve. It's encouraging that they plan to retest her levels after a period on the gluten-free diet, as it might take time for the body to adjust.

I know it’s hard not to think about the worst-case scenario, but try to stay hopeful. Every case is unique, and some people do see improvements in hormone levels as they heal. It might also be helpful to work with a healthcare provider who understands both celiac disease and hormonal issues to make sure your daughter is getting the right support nutritionally and medically.

knitty kitty Grand Master
knitty kitty
Posted

Welcome to the forum, @Maureen1,

Have your daughter checked for vitamin and mineral deficiencies!  Celiac Disease causes malabsorption of essential nutrients.  Most newly diagnosed Celiacs are deficient in Vitamin D.  

Vitamin D is extremely important in hormone production, as well as (auto)immune system regulation.  Low Vitamin D is associated with high FSH.

Also, checking the Thyroid is warranted.  Low Vitamin D can affect the Thyroid which can stimulate high FSH levels.  

There are four fat soluble vitamins (A, D, E, and K), and Eight Essential B vitamins, and Vitamin C, plus minerals like calcium, magnesium, iron and potassium, and a handful of trace minerals.  Our bodies don't function properly if we are not able to absorb these nutrients as occurs in Celiac Disease.  Doctors are not trained in nutrition and don't recognize nutritional deficiencies.  Blood tests are not accurate measurements of vitamin deficiencies.  One can have serious deficiencies before blood serum levels reflect a deficiency.   

I had serious nutritional deficiencies that caused hormone and fertility problems, among other things, so I understand how you both feel.  

Do get checked for nutritional deficiencies.  Since Celiac is genetic, all first degree relatives (parents, siblings) should be checked for Celiac Disease as well.

References:

Is there a link between premature ovarian failure and serum concentrations of vitamin D, zinc, and copper?

https://pubmed.ncbi.nlm.nih.gov/22968257/

 

Association between serum 25-hydroxyvitamin D and ovarian reserve in pre-menopausal women

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4317384/

 

The Associations of Vitamin D with Ovarian Reserve Markers and Depression: A Narrative Literature Review

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10780911/

 

Effects of vitamin D supplementation on ovarian reserve markers in infertile women with diminished ovarian reserve

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8830860/

 

Vitamin d deficiency and its association with thyroid disease

https://pubmed.ncbi.nlm.nih.gov/24533019/

 

The relationship between thyroid function and ovarian reserve: a prospective cross-sectional study

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8485554/

 

The short-term effect of high dose vitamin D3 supplementation in improving hypovitaminosis in patients with type 2 diabetes - A randomized clinical trial

https://pubmed.ncbi.nlm.nih.gov/35470105/

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    • knitty kitty
      Feeling ill

      By knitty kitty · Posted

      Welcome to the forum! Keep in mind that if you quit eating gluten before all testing is done, you may have inaccurate, possibly false negative, test results.  When you stop eating gluten, your body stops making the antibodies which are measured in the blood tests.  Stopping gluten before an endoscopy may make the intestinal damage harder to detect, and a false negative biopsy may result.  As uncomfortable as it is, finish all testing before going gluten free.  
    • Scott Adams
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      By Scott Adams · Posted

      Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      fed up italian

      By Scott Adams · Posted

      Your feelings are completely valid, and I want to commend you for advocating for yourself despite the initial resistance from your doctor. Navigating a new celiac diagnosis can feel overwhelming, especially when you're adjusting to such a big lifestyle change. It’s natural to grieve the loss of your old eating habits and to feel frustrated by the constant label-reading and vigilance required. But please know that you are not alone, and many others have walked this path and come out stronger on the other side. Healing takes time, and while the brain fog, fatigue, and bowel symptoms can be discouraging, they often improve as your body begins to recover. It’s great that you’ve hired a dietitian—that’s a big step in supporting your healing journey and ensuring you’re getting the nutrients your body needs to rebuild. Remember, each small step you take is progress, even if it doesn’t feel like it right now. It’s okay to feel sad and angry, but also try to give yourself credit for your strength in facing this. The fact that you pushed for answers shows how resilient you are. While the road ahead may have challenges, many people find that over time, they feel better than they ever imagined possible once their gut begins to heal. You’ve got this, and the celiac community is here to support you every step of the way. If you have time, this book was published on Celiac.com's and you might find it helpful: Also, this article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • trents
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      Welcome to the forum, @Whyz! By "half way to being diagnosed" I assume you mean you have had the blood antibody testing done but not the gastroscopy with biopsy. Is this correct? Were the results of your blood work positive for celiac disease?
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      By trents · Posted

      Three days of no gluten is not likely to have much impact on serum antibody test results. I have more concern over exactly what test or tests were ordered. When you get the results back, please post them including the reference ranges for the tests for negative vs. positive. What country are you in? Do you have much choice in what doctors you see? Sounds like it might be a good idea to seek out another physician who knows what they are doing in this area of disease diagnosis. At any rate, you have the link I shared above outlining the various tests that can be run so that might be a resource you could share with a physician.
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