Newly diagnosed with Celiac, considering consulting Reproductive Endocrinologist

[Beth1181]

I'm newly diagnosed with Celiac Disease, after endoscopy to check on some severe GI issues I was having. After reading more about this disease, I'm seeing a link for recurrent miscarriages. I had two miscarriages this past year with no explanation from doctors (prior to being diagnosed). I'm wondering, for those wanting to conceive, did you seek out help from a Reproductive Endocrinologist? Or, what level of fertility help did you require to have a healthy pregnancy. Thanks in advance!

[Scott Adams]

Sorry not to answer your specific questions, but I do want to try to help. 

Of course, going gluten-free is crucial, which it sounds like you already know. Hopefully you understand the details of a 100% gluten-free diet.

I was wondering if your doctor did a blood test for vitamin & mineral levels, to see where you stand now, and whether you should be taking supplements?

Also, here are articles that we've done on this topic:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/fertility-pregnancy-miscarriage-and-celiac-disease/ 

[Beth1181]

1 hour ago, Scott Adams said:

Sorry not to answer your specific questions, but I do want to try to help. 

Of course, going gluten-free is crucial, which it sounds like you already know. Hopefully you understand the details of a 100% gluten-free diet.

I was wondering if your doctor did a blood test for vitamin & mineral levels, to see where you stand now, and whether you should be taking supplements?

Also, here are articles that we've done on this topic:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/fertility-pregnancy-miscarriage-and-celiac-disease/ 

Hi Scott, 

Thank you for your response. I appreciate it. I did go for a blood draw today, and will be meeting with a nutritionist to ensure 100% gluten-free diet. Thank you for the article links too! 

Beth

[Ana L]

Hello Beth, 30 years ago I had my first miscarriage and I had 3 more after that.I was diagnosed 9 years later with celiac disease. I did have 4 healthy children later on and I went to multiple fertility clinics at no avail.They did not find any important issues that could be causing the recurrence .After my ultimate diagnosis in 1999- 2000 it seemed clear that my miscarriages  were somewhat related to my disease as I began a strict diet and managed my 4th child in 2003 .

It is definitely important to follow a strict GlutenFree diet and be properly diagnosed .

 

 

 

 

[RebeccaMSL]

On 1/20/2021 at 3:55 PM, Beth1181 said:

I'm newly diagnosed with Celiac Disease, after endoscopy to check on some severe GI issues I was having. After reading more about this disease, I'm seeing a link for recurrent miscarriages. I had two miscarriages this past year with no explanation from doctors (prior to being diagnosed). I'm wondering, for those wanting to conceive, did you seek out help from a Reproductive Endocrinologist? Or, what level of fertility help did you require to have a healthy pregnancy. Thanks in advance!

I have had Celiac Disease my entire life and didn't know/wasn't diagnosed until I was 31. I had my son when I was 30, and conceived when I was underweight and anemic and suffering GI symptoms. All this to say, as ill as I was, I was still able to carry my son to term. He is healthy and now 18 years old. If I could offer some advice though, WAIT for your Villi to heal before conceiving. Maybe give it a good 6 months of gluten free eating and then go for it so your baby has optimal access to nutrients. I did note that my symptoms were better when I was pregnant possibly because pregnancy tamps down the immune system but came back with a vengeance after he was born. Also, auto immune diseases tend to cluster in people; I have 7 auto- immune diseases, and hypothyroidism is commonly experienced post-partum so keep you eyes out for that after you have a baby.  Remember also that miscarriage in the first trimester is very common, so it may have had nothing to do with Celiac. Best wishes!!

[Juca]

Hi Beth, 

I was lucky enough to be diagnosed just before I tried conceiving. I was a Marsh 3C, severely anaemic and with several vitamin deficiencies.

I was told (by gastroenterologist and nutritionist) to wait 1 year before conceiving and take care of myself in the meantime. I started with easy to digest meals (low carb, no sugar, no sweeteners, no gluten free bread and pasta substitutes) for some months, then slowly added other things to the diet. I kept it nutrient dense (think eggs, nuts, broths, meat, fish, lots of cooked veggies...). Stay away from milk and cream for a little while if needed, can be hard to digest. I had iron infusions, B12 injections and supplemented with high dose D3 and some cod liver oil/fish oil as well. Fermented foods are a good idea, to get some healthy bacteria in the damaged gut, but not straight away from the beginning, introduce slowly. 

I got pregnant in the very first month trying, my boy was healthy and 4 kilos heavy. Now, years after my diagnosis, I am still a Marsh 3C and need iron infusions regularly. I wouldn't necessarily wait for the villi to heal, mine didn't, just keep an eye on your iron levels before and during pregnancy. 

After that year on the diet I felt stronger, had more energy, could think straight, gained a little weight, some other minor health issues were gone. I think you will know when you are ready. Also, knowing that I was doing all this for my baby was a big help, to stay determined to follow this diet. Because there will be some ups and downs, and in the first month or so, you will probably even feel worse than before your diagnosis. 

You will make it. You are strong, you have already been through a lot. We are here for you if you need anything. 

All the best!