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Newly Diagnosed & Need Answers On Infertility

Stephanie R

By Stephanie R
in Related Issues & Disorders

Recommended Posts

Stephanie R Newbie
Stephanie R
Posted

Hi there! I am recently ( in the last month) diagnosed with celiac disease. As I have been researching this disease I have came across alot of information on infertility and celiac disease. I am 30 yrs old and have have 5 miscarriages and 2 eptopic pregnancies in the last 7 yrs. I have 2 beautiful children ages 9 and 11 ( both normal pregnancies). After my last miscarriage about a year and a half ago, my doctor advised me to get my tubes tied. So I did, very much against my will. My husband and myself couldn't bare to see me go through the physical and emotional stress that came along with each loss. I thought that it would never happen. Now after reading all of the information that is out there I am finding myself being angry that I never had answers to why I couldn't carry a baby full term and now I can not have a child at all.

Since being diagnosed I have found hope in the fact that I know what is wrong with me and can control it. I am aware that I will need to live a Gluten free lifestyle for some time before I can even consider getting my tubal ligation reversed, but I am hoping that someone can give some advise as to how long should I wait and is it even an option now that I know what is going on with my body, could I possibly carry a baby full term? (by the way there has never been a known reason as to why I lost my babies)

Any information on this is appreciated!

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Mtndog Collaborator
Mtndog
Posted

Welcome Stephanie- I am sorry you've been through sso much. There is a huge link between undiagnosed celiac and infertility in terms of miscarriage. I don't know the exact answer to your question about reversing your tubal ligation, but my GI told me that after one year gluten-free, your odds return to what your odds should be naturally. Hope this helps, Beverly

Stephanie R Newbie
Stephanie R
Posted
  • Author

Thank you so much for your kind words. They help. This is all so very overwhelming and exciting all in the same. I al ready feel so much better and am looking forward to a much healthier life style. Thank you for your response.

hannahsue01 Enthusiast
hannahsue01
Posted

Frist off I am very sorry for what you have been through. I have heard that there is a link between infertility and celiac. I myself just had a baby had 29 weeks gestation due to celiac and have had one miscaraige since. My understanding is that is natures way of taking care of what our bodies can't support. I was not gluten free and was unaware of the disease untill after our second daughter was born. I believe that you would eventually be able to try for another baby with your tubes reversed. I would consult a professional on how long to wait. From what I have found around her it can take a good year or more for you stomach to heel and then you should start to obsorb the nutrients you would need for yourself and a little one. I hope the best for you and maybe a new baby in the future.

Ursa Major Collaborator
Ursa Major
Posted

Hi Stephanie, and welcome to this board. Yes, there is definitely a link from celiac disease to infertility and miscarriages. I believe that when we're malnourished (no matter how well we eat, most people with celiac disease will still be malnourished due to malabsorption of essential nutrients), our bodies can't support a growing baby. I've had eight miscarriages and very difficult pregnancies. It is too late for me to have another baby. But I hope for you that it will be possible for you to have more babies after you heal.

How fast you heal depends on how much damage there is. I would wait at least a year before reversing the tubal ligation. You know your body best. When you feel that you are well, have lots of energy again, no gastro symptoms, no neurological symptoms and have figured out the diet to such a degree that you very, very rarely get glutened, I think you will be ready.

I would talk to a specialist surgeon before that, to see what your options are. I don't know where you live, but here in Canada it can be many months before you would get in to see a specialist. You would want to book your initial appointment fairly soon, but don't book any surgery until you are truly ready.

happygirl Collaborator
happygirl
Posted

Stephanie,

Welcome to the board! We have all had our different journies to get here...but we are happy you have found this resource and hope some of our information can help.

The parent site to this forum, celiac.com, has some WONDERFUL abstracts of journal articles related to various disorders. Here is the one on infertility/pregnancy/miscarriage and Celiac:

https://www.celiac.com/st_main.html?p_catid...-38106579028.e8

On the celiac.com page, there are also multiple lists and a TON of information. Some of that "basic" knowledge was such a good start...then I could start digging in deeper. Just keep in mind the importance of being 100% gluten free...it is a strict diet, but we are here to help and have lots of tricks up our sleeve!

Another great resources is by Dr. Green, a leading Celiac researcher/physician at Columbia University. Published this spring (I think), it is called Celiac Disease: A Hidden Epidemic. You can order it off amazon, and my local Borders carried it, etc. It covers information on related disorders, including fertility/pregnancy, in depth. I HIGHLY recommend it--it has helped me so much. Unfortunately, many (not all), but many doctors know very little about Celiac. Having these real references (by real experts, in a format that doctors can look at) has been helpful when I have dealt with doctors.

Hope this helps...please let us know what we can do. Keep us updated!

Laura

Alexandra Newbie
Alexandra
Posted

Stephanie,

I'm so sorry about your many losses.

I'm not a diagnosed celiac (in fact my bloodwork came back negative), but I chose to go gluten free because I think I feel better when I do. I conceived through IVF shortly after going gluten-free, but to be honest I think it was not the gluten-free but rather getting my anti-thyroid antibodies (about which a bit more below) detected and my hypothyroid symptoms treated that made the difference (however, I don't really know and am DEFINITELY staying gluten-free throughout my pregnancy to be on the safe side). I had done IVF 3 times previously with no luck before that (my husband has a failed vasectomy reversal making IVF necessary).

Although others stress the importance of waiting until your body is healed to get pregnant, and that's obviously good advice, I'd add that surgical procedures to our reproductive tract take awhile to take effect. I don't know how that works with tubal reversals, but in the case of my DH we had to wait one year after his reversal surgery to know for sure that it hadn't worked. As female fertility declines with age, I think this would be worth finding out about. You might consider going ahead with the surgery and then relying on another contraceptive method while you wait for your body to heal from the celiac -- in case the effects of the reversal kick in quickly, since that can (probably) be unpredictable. I'd recommend consulting a specialist.

Another option probably open to you is IVF, though I doubt if that is as good an option as a reversal. But, it would again be worth talking with a specialist about.

Unfortunately if you live in the US I think you will find that these procedures (reversal, IVF) are not covered by insurance, and that they are expensive. Perhaps you will be one of the lucky ones who has insurance coverage, but most policies don't provide it for infertility.

Good luck to you.

-- Alexandra

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Guest Kathy Ann
Guest Kathy Ann
Posted

I am very fortunate to have had several healthy full term babies. But intertwined amongst them were several miscarriages as well. No explanation was ever given why it kept happening. "Just one of those things."

Now that I am diagnosed celiac, it all fits. But I think there must be more to it than just malnutrition. I'm wondering if celiac doesn't also affect the production of hormones like progesterone. According to my bloodwork, I never showed deficient in anything specific - at least not clinically that they could see.

Anyway, I also know of many people who have had reversals and gone on to have more healthy children. No reason it can't happen to you as well! Get things healed and your body rested and wait to see what God will do. :)

twtums Newbie
twtums
Posted

Hi! I haven't had miscarriages so I can't say specific to that but I have had 2 years of infertility before going gluten free. 2 months later I was pregnant. I am 14 weeks and so far things are great. I was nervous getting pregnant so soon after my diagnosis but it was God's will and obviously I had healed enough to get pregnant.

I don't think we can totally know how healed we are, I think I good gauge of it is how you are feeling. I know I was feeling better in 2 days and tons better in a couple weeks. As someone mentioned fertility does decline with age as well as risks in pregnancy go up so you have to weigh that as well. I was told you start healing when you stop gluten but for complete healing it can take 2-3 years. So maybe ask your doctor the best time to start trying?

Alexandra Newbie
Alexandra
Posted

Stephanie,

Oops -- I forgot to add above in my original response to your post what I meant to about the anti-thyroid antibodies.

They are another thing that might be worth getting tested for (if you haven't already). These correlate with various kinds of fertility problems and are more common in celiacs than in the general population. New research is suggesting their negative impact on fertility and pregnancy may be treatable. And they can be detected through a simple blood test -- any doctor can order it for you. If you do get tested and it turns out you have them, I'd suggest seeing a thyroid specialist and letting him/her know you are ttc. I found my thyroid doc (whom I like a lot) using this website: Open Original Shared Link.

Good luck to you. I am sorry to read about the struggles you've had and hope you'll find a way to build the family of your dreams.

-- Alexandra

Kels Newbie
Kels
Posted
Hi there! I am recently ( in the last month) diagnosed with celiac disease. As I have been researching this disease I have came across alot of information on infertility and celiac disease. I am 30 yrs old and have have 5 miscarriages and 2 eptopic pregnancies in the last 7 yrs. I have 2 beautiful children ages 9 and 11 ( both normal pregnancies). After my last miscarriage about a year and a half ago, my doctor advised me to get my tubes tied. So I did, very much against my will. My husband and myself couldn't bare to see me go through the physical and emotional stress that came along with each loss. I thought that it would never happen. Now after reading all of the information that is out there I am finding myself being angry that I never had answers to why I couldn't carry a baby full term and now I can not have a child at all.

Since being diagnosed I have found hope in the fact that I know what is wrong with me and can control it. I am aware that I will need to live a Gluten free lifestyle for some time before I can even consider getting my tubal ligation reversed, but I am hoping that someone can give some advise as to how long should I wait and is it even an option now that I know what is going on with my body, could I possibly carry a baby full term? (by the way there has never been a known reason as to why I lost my babies)

Any information on this is appreciated!

Hi Stephanie,

I am in a similar situation to you as I also had two healthy children before my pregnancy problems started. I guess I am fortunate though that my diagnosis came a little sooner than yours. I am so sorry that you have been through such a hard time and I can understand why you didn't want to go through any more heartbreak.

In the past year I have had two miscarriages, one at 13 weeks and one at 16 weeks. I have since been diagnosed as a celiac. (Well, my testing came back as borderline but my dad is a celiac and I certainly have the beginning of intestinal damage so I am convinced this is what has caused me to miscarry.) My ob has told me to wait 6 months before trying again and has also advised me to take 5mg of folate for 1-2 months before trying to make sure that I have plenty of folate in my body for the pregnancy. I have already started on other pre natal vitamins as well... just in case. He said that after six months of a strict gluten free diet my chances of miscarrying again will be the same as everyone else so delivering another healthy baby is a real possibility....one that I had almost given up on. I certainly hope he is right!

I have been on the diet for 2 months now and feel great so I will keep my fingers crossed for both of us!

Good luck

Kelly

Guest cassidy
Guest cassidy
Posted

Sorry for all that you have been through. At least you know why now.

I went gluten-free in January and we started trying in August. I tried to figure out how long I needed to wait after going gluten-free and 6 months seemed to be the answer I found most. My bloodwork was negative but if yours was positive then you could wait 6 months and have the blood test again. If it is negative then you are well on your way to healing and should probably be ok. They say that it takes 6 months to a year for the damage to heal, so waiting a year at the most should be very safe.

Stephanie R Newbie
Stephanie R
Posted
  • Author

I just wanted to thank everyone for the kind words and all of the encouraging information. It is really appreciated

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    • trents
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      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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