Fertility Issues For Non-Celiac Gluten Intolerance

[GlutenFreeAustinite]

So I'm not pregnant, or planning to get pregnant, for a very long time, but I just got diagnosed with NCGI (though it's possible I could be celiac, I suppose, due to testing malfunctions). I was wondering if anyone with gluten sensitivity/NCGI had problems with fertility...I know it's an issue with celiac, but anything else?

[daniknik]

So I'm not pregnant, or planning to get pregnant, for a very long time, but I just got diagnosed with NCGI (though it's possible I could be celiac, I suppose, due to testing malfunctions). I was wondering if anyone with gluten sensitivity/NCGI had problems with fertility...I know it's an issue with celiac, but anything else?

Are you concerned because you've noticed changes in your cycle? Because that was one of the reasons that I went gluten-free to begin with. Ultimately the short answer to your question is...yes. There are many of us who have had problems with fertility with or without an official celiac diagnosis. I am self-diagnosed Celiac (my grandfather was diagnosed and I carry both a Celiac and non-celiac gluten sensitivity gene) but my blood tests were negative since I'd already started the gluten-free diet before I was tested and my doctor believes that I am NCGI. Personally, one of the reasons that I went gluten-free was to see if it would help regulate my period. Unfortunately, while my overall health improved drastically since I changed my diet. I still ended up being diagnosed with primary ovarian insufficiency (or POF-Premature Ovarian Failure as it's commonly called) at age 32.

Here's my story with regards to that. I started having trouble with irregularity when I was about 28 1/2 years old. My cycle shortened from 29 days like clockwork to every three weeks (in addition to suffering from hot flashes, terrible night sweats, loss of libido, urinary frequency and dryness). After having my blood tested a couple of times over the past three years (and coming back normal each time) I ended up getting abnormal results the last time around as I was preparing to begin trying to get pregnant. What truly indicated the POF for me was not the high FSH but the measurement of my Anti-mullerian hormones or AMH and the fact that I am not ovulating and probably haven't been for a while. Recent studies have shown AMH to be a better indicator of ovarian reserves than FSH. Normal women at my age (32) are around a 3 or 4. When tested my AMH was at 0.11 and then even lower when they re-did the test. When you get to 0 there are no egg follicles left. (When the Dr. ultrasounded my ovaries I had no follicles in my right ovary and only 3 in the left...also consistent with the diagnosis) AMH is a newer test that wasn't in use frequently three years ago...so my regular doctor wouldn't have known to use it. Currently, I am still having periods, but my FSH is above normal (though not yet fully menopausal) and both my estrogen and testosterone levels are low. I was told that my only hope of getting pregnant would be to use donor eggs and IVF since my odds were less than 2% if I was going to try to use the few remaining follicles that I have.

Fortunately, or unfortunately for me (depending on how you look at the situation) I am in a lesbian relationship which makes access to sperm extremly difficult, but access to a second uterus par for the course. In light of our situation, I have decided not to pursue IVF with egg donation at this time (Even though our HMO insurance in Illinois would have covered the vast majority of the costs! Amazing...simply amazing. Illinois is one of only 6 states to mandate infertility coverage including IVF in health insurance). If I had done the egg donation, my wife would have been my donor...but after reviewing the possible side effects of IVF we decided that we'd be better off if she carried the babies rather than me getting pregnant and risking triggering any additional auto-immune problems.

I'm sorry to throw my sob-story at you...but I needed to get it off my chest and perhaps find a way to encourage you to be your own best advocate. I was worried for years and kept hearing "you're young and healthy." from my doctors. Sure, I am young. And I'm much healthier than I've ever been...but that doesn't mean that I didn't know when something was off in my body. You are the best judge of your situation. If you have concerns, listen to your intuition and don't wait to start trying (if you can). If it is not a good time for you to be pregnant now, but you still think you want kids. Actively pursue a good relationship with your doctor and consider checking your AMH in addition to your FSH, Estradiol, and LH. The AMH levels will let you know whether or not you have a good amount of follicles in reserve. The higher your number, the "younger" your ovaries are and the more time you can wait. Blessings and good luck to you!

[smiley2017]

I would love to hear advice from other people as well. I as well have NCGI (although I was never tested for Celiacs becuase my doctor thought it could *never* be that and I went off it on my own and have had great health leaps). I am struggling with family members accepting this as "real" and making me feel extremely guilty/uncomfortable for choosing this lifestyle because it burdens others (even though I really try to go with the flow and have been bringing my own food so they can continue to cook their normal meals)!! Anyway, right now I don't eat any gluten products but haven't been super cautious about cross contamination or checking every little thing. My husband and I would like to start trying to have a baby within the next year and I'm not sure whether I should act super strict like I really do have Celiac's or continue eating the way I am. Anybody who has NGCI have experience with getting pregnant? 

[kareng]

2 minutes ago, smiley2017 said:

I would love to hear advice from other people as well. I as well have NCGI (although I was never tested for Celiacs becuase my doctor thought it could *never* be that and I went off it on my own and have had great health leaps). I am struggling with family members accepting this as "real" and making me feel extremely guilty/uncomfortable for choosing this lifestyle because it burdens others (even though I really try to go with the flow and have been bringing my own food so they can continue to cook their normal meals)!! Anyway, right now I don't eat any gluten products but haven't been super cautious about cross contamination or checking every little thing. My husband and I would like to start trying to have a baby within the next year and I'm not sure whether I should act super strict like I really do have Celiac's or continue eating the way I am. Anybody who has NGCI have experience with getting pregnant? 

I am just thinking that you actually don't know that you don't have Celiac.  so, you might want to act like you do have it.  Because, what if you do have Celiac and you aren't treating it?

[smiley2017]

I would like to but I guess I am struggling with other people not being accepting of that since I have never been tested. :/ When I am at home I pretty much eat gluten free (although I would be MORE cautious if I was diagnosed with Celiacs so I guess you are right). It is just when travelling that I have been struggling. But that is very good advice Thank you!!

[kareng]

11 minutes ago, smiley2017 said:

I would like to but I guess I am struggling with other people not being accepting of that since I have never been tested. :/ When I am at home I pretty much eat gluten free (although I would be MORE cautious if I was diagnosed with Celiacs so I guess you are right). It is just when travelling that I have been struggling. But that is very good advice Thank you!!

It's your baby.... but untreated Celiac can lead to miscarriages.  

 I think part of being a mother is doing what's is best for your kids, no matter what your friends or some random relative thinks.  Perhaps you are not ready to have a child yet?  Or maybe you should do a gluten challenge and get tested so you can justify your diet to others or know what you are dealing with?  

 

Edit to add - when you are pregnant, everyone, even random strangers, will give you advice.  Some of it will be very odd or outdated. You can't possibly listen to all them.  You need to be strong enough to deal with  other people's ideas and do what you know is right.

[cyclinglady]

Can you get a second opinion?  Consider a challenge?  

I was officially diagnosed (4 years ago), but my hubby had doctors who advised him to go gluten free 16 years ago.  We know that gluten makes him ill.  He will not consider a challenge (we like paying our bills).  He will say that I have had way more medical and family support.  

Karen is right that miscarriages are common when you have celiac disease.   Good luck!  

[smiley2017]

10 hours ago, kareng said:

It's your baby.... but untreated Celiac can lead to miscarriages.  

 I think part of being a mother is doing what's is best for your kids, no matter what your friends or some random relative thinks.  Perhaps you are not ready to have a child yet?  Or maybe you should do a gluten challenge and get tested so you can justify your diet to others or know what you are dealing with?  

 

Edit to add - when you are pregnant, everyone, even random strangers, will give you advice.  Some of it will be very odd or outdated. You can't possibly listen to all them.  You need to be strong enough to deal with  other people's ideas and do what you know is right.

I'm sorry but this is my first day on the forum and I am trying to get more information BEFORE we get pregnant. I don't know everything about this & that is why I am trying to learn. I was trying to get information about NCGI and having a baby- anybody who had experience with that. I don't understand how or why you would suggest that I am not ready to be a mother when you DON'T know me. Everyone has weaknesses - and yes when my family and doctors tell me I am making things up and following "fads" it is hard. Yet when I visit family I still have eaten gluten-free, I bring my own food, it is just hard for me. I was trying to find support on this forum from other people who had similar experiences or information about getting pregnant while having NCGI. Did they eat 100% gluten free? How strict were they about cross contamination? I'm assuming others are in unsupportive communities as well since many people don't believe in NCGI as a real condition but maybe it is just me.  

I am looking into getting a second opinion in light of these posts so thank you so much. I have not been around people who understand Celiac's and so the information I have been finding online about NCGI and pregnancy doesn't have any/much research. Hopefully I can get a clear answer one way or another and if not, I will seriously consider treating my time during pregnancy like I do have Celiacs. 

[Jmg]

42 minutes ago, smiley2017 said:

I was trying to find support on this forum from other people who had similar experiences or information about getting pregnant while having NCGI. Did they eat 100% gluten free? How strict were they about cross contamination? I'm assuming others are in unsupportive communities as well since many people don't believe in NCGI as a real condition but maybe it is just me. 

Hello and welcome

It's difficult advising about NCGS as there's little firm evidence available. I've tried to collect the best of it here: https://www.celiac.com/forums/topic/117969-non-celiac-gluten-sensitivity-a-resource/

I'd recommend the Umberto Volta link. He talks in detail about NCGS and in particular his advice that NCGS patients need to strictly follow the gluten-free diet just as Celiacs do. 

Now that's how I live and experience has taught me that I can't take chances and have to be careful of small amounts of cross contamination. However I don't think everyone is the same and there may be others who are ok with varying levels. It's very difficult to generalise because the condition is little understood and many indeed doubt its existence or that its symptoms are caused by gluten itself. 

So bearing all that in mind, my advice to you would be to take reasonable precautions and try perhaps at least for the duration of your pregnancy to be fully gluten free. Any experiments you wish to make on what diet is viable for you can wait till after the happy day?

Best of luck!

Matt 

 

 

[kareng]

1 hour ago, smiley2017 said:

I'm sorry but this is my first day on the forum and I am trying to get more information BEFORE we get pregnant. I don't know everything about this & that is why I am trying to learn. I was trying to get information about NCGI and having a baby- anybody who had experience with that. I don't understand how or why you would suggest that I am not ready to be a mother when you DON'T know me. Everyone has weaknesses - and yes when my family and doctors tell me I am making things up and following "fads" it is hard. Yet when I visit family I still have eaten gluten-free, I bring my own food, it is just hard for me. I was trying to find support on this forum from other people who had similar experiences or information about getting pregnant while having NCGI. Did they eat 100% gluten free? How strict were they about cross contamination? I'm assuming others are in unsupportive communities as well since many people don't believe in NCGI as a real condition but maybe it is just me.  

I am looking into getting a second opinion in light of these posts so thank you so much. I have not been around people who understand Celiac's and so the information I have been finding online about NCGI and pregnancy doesn't have any/much research. Hopefully I can get a clear answer one way or another and if not, I will seriously consider treating my time during pregnancy like I do have Celiacs. 

I just want you to consider the facts so you don't have the heartache others have had.  You really don't know that you are NCGI do you? You probably know that you are gluten intolerant.  But you could be Celiac.  

People can be gluten intolerant for many reasons - some of those reasons, for example FODMAPS, do not  require a completely gluten-free diet.  Celiac does.

Good luck

[cyclinglady]

Smiley, 

To answer your question, if you have NCGI (and only way to get this officially diagnosis is to rule out celiac disease), you have to be very careful on your diet.  Cross contamination is a huge issue.  

You can be gluten free on your own.  You do not need an official diagnosis.  There are tons of people who do not have an official diagnosis.  Usually, they have gone gluten free because of poor advice from medical doctors, the media, or for financial reasons (the list goes on).  But not having a diagnosis can be hard in terms of medical and family  support.  If I have a new medical condition, my doctors are quick to respond.  If my hubby (gluten free for 16 years) has medical issues and he mentions that he might have celiac disease, he gets a lot of eye-rolling.  The only reason he has received so much support from even me, his wife, is that I had been lactose intolerant and had known food allergies since I was a kid.  The same goes for my extended family.  We are riddled with AI issues and allergies.  You can imagine how we have to carefully plan our meals and we haul around epi pens (not necessary for the celiacs or gluten sensitives). 

My diagnosis has helped my own teen daughter.  Her doctor is quick to check her for thyroiditis, celiac disease or anemia.  I do not have to push at all since I already have an official diagnosis and this disease is genetic.  

If you have an opportunity to get tested for celiac disease, consider doing so.  It may save more than just you, but your future children, siblings or parents.  

So, keep doing what you are doing — advocating for your health.  We have some pretty amazing members who not only live the gluten-free lifestyle, but who attend celiac conferences and keep up on research because a lot of doctors don’t have the time to do so.  Good doctors do not know everything, but they’ll take the time to google it if they do not!  If your doctor will not go the extra mile, then search for a new one.  I recall years ago, one GI flatly telling me that I was a stressed out young woman.  That all my issues were in my head (like abdominal pain, passing out and diarrhea is all in your head. ?).  My husband strongly disagreed!  Years later, I finally got my diagnosis after years of symptoms waxing and waning.  

Some members, like me and Karen, have been around a long time (not just on  this forum, but have life experience, code for old ?).  It often pains us to see others going down the same road we did so long ago.  We are Mothers who desire perfect health for our own families and our celiac.com families!  Why else would we be here?  Geez, Karen has over 15,000 posts.  I bet she gets tired of posting the same things.  But, if she could help just one person, she is happy.  I am speaking for her, because I feel the same way.  

Gee, now I am getting all sentimental....and off track.  

 

 

[kareng]

1 hour ago, cyclinglady said:

 

 

Some members, like me and Karen, have been around a long time (not just on  this forum, but have life experience, code for old ?).  It often pains us to see others going down the same road we did so long ago.  We are Mothers who desire perfect health for our own families and our celiac.com families!  Why else would we be here?  Geez, Karen has over 15,000 posts.  I bet she gets tired of posting the same things.  But, if she could help just one person, she is happy.  I am speaking for her, because I feel the same way.  

ck.  

 

 

Holy S&%$!  I talk too much!  And I AM old!  

[cyclinglady]

1 hour ago, kareng said:

Holy S&%$!  I talk too much!  And I AM old!  

?

[exshuffleskater]

On 11/9/2017 at 3:24 AM, smiley2017 said:

I'm sorry but this is my first day on the forum and I am trying to get more information BEFORE we get pregnant. I don't know everything about this & that is why I am trying to learn. I was trying to get information about NCGI and having a baby- anybody who had experience with that. I don't understand how or why you would suggest that I am not ready to be a mother when you DON'T know me. Everyone has weaknesses - and yes when my family and doctors tell me I am making things up and following "fads" it is hard. Yet when I visit family I still have eaten gluten-free, I bring my own food, it is just hard for me. I was trying to find support on this forum from other people who had similar experiences or information about getting pregnant while having NCGI. Did they eat 100% gluten free? How strict were they about cross contamination? I'm assuming others are in unsupportive communities as well since many people don't believe in NCGI as a real condition but maybe it is just me.  

I am looking into getting a second opinion in light of these posts so thank you so much. I have not been around people who understand Celiac's and so the information I have been finding online about NCGI and pregnancy doesn't have any/much research. Hopefully I can get a clear answer one way or another and if not, I will seriously consider treating my time during pregnancy like I do have Celiacs. 

One of the reasons it's risky to have undiagnosed celiac when getting pregnant is because you will unavoidably be exposed to high levels of prolactin, which both promote the flow of breast milk, and upregulate the immune system.  This is why so many illnesses in women can be triggered by pregnancy. 

To make a rational choice about your future pregnancy, it's my opinion that you should have a Celiac screening as thorough as you can afford (including EMA), and maybe a test for IgE allergies.  If your doctor balks, then a "direct to consumer" lab might do the job for you and your doctor can just be asked to help you make sense of the results. 

Those labs have been around since the 1990s, it's not a newfangled thing anymore. I hope it helps.