Infertility

[Grace22]

Hi I am very new to this board.

I havn't been diagnosed with celiac disease as yet and don't know if I have it.

I do have autoimmune hashimoto thyroiditis(under control) diagnosed at

age 35.

I am now 39.

I have had 2 m/cs to date - both conceived under clomid.

ttc since 1998.

The only symptom i get which makes me suspect celiac disease is

1) Infertility

2) Bloating

My grandmother died of sprue(which i think is celiac disease) and dad suffered with ulcerative colitis.

My two brothers are now lactose intolerant and my neice is allergic to protein in dairy products - from birth up until age of 15(at present).

So, I do present with a lot of autoimmune issues here and possibly celiac disease.

I am wanting to know if anyone has fallen pregnant after eliminating gluten from their diet.

I am new to the board and havn't read all the posts yet.

And - how does celiac disease affect infertility.

Thanks so much!

[melisadki]

Grace I am new to this too and also suffer inferitliy and miscarriage. I have read somewhere on here that after going gluten-free that your chance of Miscarriage decreases greatly. There is a big connection between celiac disease and Thyroid disease so there is a good chance you have celiac or are at least gluten intolerant like me. I was diagnosed by Enterolab. My blood test came back negative.. I am only 2 days into the diet so I cant report much back yet about getting pregnant.

I am hoping this will be the answer for you. To me a change in diet is well worth holding a baby in my arms soon.

[julie5914]

Sounds like you need to get tested whether it will increase your chances of getting pregnant or not. If you have it and go gluten-free, it will increase your chances of staying alive. celiac disease can definitely cause infertility because of malabsorption. Your body isn't going to get pregnant if it doesn't have enough nutrients to support just you, let alone a baby.

[floridanative]

The Celiac expert (consulted with Dana Korn for Wheat-free, Worry-free) I saw speak two weeks ago said that one of the most overlooked groups of undiagnosed Celiacs are those with infertility problems. There is no mention of Celiac diesease in the training of fertility specialists so they have no way of thinking to test their patients for Celiac. IF someone has Celiac and doens't know it and they can't concieve, it's likely they would be able to concieve once on the gluten free diet. However, this is IF they don't have other issues that cause infertility not related to Celiac. The doctor said the many couples spend thousands on invitro procedures when IF they have Celiac they just have to go on the gluten free diet (free) in order to get pregnant. How sad is that?

[TCA]

I am in tears (of joy)! As I've been learning about celiac disease over the past few months I came to realize that a good friend of mine fit the description perfectly. She's had a number of miscarriages, in vitro, drugs, you name it. i told her about celiac disease and she started the diet 2 weeks ago asnd had her first period in 3 years within 3 days!!! She took an ovulation test and is ovulating now!!!!!! It's amazing, and an answered prayer!

May God bless you as He has her!

[Guest Robbin]

Hi, I had 2 miscarriages and infertility problems. My first child, now 21 was conceived, I believe because I had been dieting right before and had lost 20 pounds on a low carb diet. Had been trying for 5 years. My second was a similar thing and I had to have a hysterectomy three years later because of excessive bleeding/endometriosis. I know now what celiac has taken from me and the long years of tears and misdiagnosis. DO NOT LET THAT HAPPEN TO ANY OF YOU!! Go gluten free and stay that way for your health and your future children's health. ALSO don't let a dr. talk you into a hysterectomy. Unless its cancer or life threatening. That is a door that is forever closed. Do the diet and see how much better you feel and if that helps bring on a joyous successful pregnancy. I am praying for you!!

[bridgette]

I have been trying to get pregnant for two years. I have very irregular periods and do not ovulate but only once a year, if that. Ive tried clomid and artificail insemination with no luck. On my own Ive gotten pregnant twice with both ending in a miscarriage. I heard about eating gluten free foods from a friend and within days I started my period which I haven't gotten in a year without being medically induced. Not only did I start my period but I ovulated AND I also had implantation bleeding a few days ago. I don't know if I'm preganant, but I'm so excited to feel like I even have a chance to be pregnant. Before I felt so hopeless because no doctor could figure out the reason why I was having so many problems. I know this has everything to do with my being regular and I will NEVER eat gluten again.

[penguin]

I have been trying to get pregnant for two years. I have very irregular periods and do not ovulate but only once a year, if that. Ive tried clomid and artificail insemination with no luck. On my own Ive gotten pregnant twice with both ending in a miscarriage. I heard about eating gluten free foods from a friend and within days I started my period which I haven't gotten in a year without being medically induced. Not only did I start my period but I ovulated AND I also had implantation bleeding a few days ago. I don't know if I'm preganant, but I'm so excited to feel like I even have a chance to be pregnant. Before I felt so hopeless because no doctor could figure out the reason why I was having so many problems. I know this has everything to do with my being regular and I will NEVER eat gluten again.

Bless your heart, I hope everything works out for you!

[jerseyangel]

Bridgette--I'm so glad that the gluten-free diet is such a help to you--what a story! I will keep you in my thoughts--best of luck--I've got my fingers crossed for you . Welcome in, by the way!

[floridanative]

I was shocked to learn that one of the most missed groups ouf Celiacs who seem otherwise asymptomatic is idiopathic infertility...apparently it can affect both men and woman with Celiac. Once such a person gives up gluten it somewhat common for them to get pregnant even when $30K in fertility treatments don't do the trick. Infertility docs don't get ANY training on Celiac in school (or even wtih ongoing training) so they don't ever think to test their patients for it.

It's also noted that someone on the South Beach or Atkins diet who had a problem getting pregnant will get pregnant while on the special diet which someone here posted happened to them. I can not believe all these different ways Celiac manifests itself and when all is said and done, I don't believe only 3 million people will have it in the US. I think the number will be higher. I have a dear friend who was told she was going into early menopause at 26. I've been trying not to dx my friends and family as not to alienate them but I'd hate not to mention this to my friend if there is a remote possibility that she could have Celiac. Maybe I should print some of these posts and give them to her. Would that be totally out of line?

[Guest Robbin]

floridanative, Please tell her. You may be saving her from so much heartbreak. I wish, more than anything in this world that I could have had a daughter (another son would have been ok too!) and that choice was taken from me. Even had I not wanted another child, the hysterectomy was so life-changing and traumatizing for me that I beg women to reconsider (unless it's life threatening) and try dietary changes. Not eating gluten is nothing compared to not having a child you desperately want. You would only be doing her a huge favor with only good intentions. I wish I had known a friend who understood this illness and could have told me. AND BRIDGETT--GREAT NEWS! A baby will happen soon. Your health is getting better and better! Congratulations!!!

[floridanative]

Thank you Robbin and you're right. I'm going to copy the six pages of the Fertility section of Dr. Green's book and give them to my friend. Then I'll tell her the truth - that I love her too much not to share this very interesting information. Thanks for making me feel okay about doing it.

[bridgette]

I was shocked to learn that one of the most missed groups ouf Celiacs who seem otherwise asymptomatic is idiopathic infertility...apparently it can affect both men and woman with Celiac. Once such a person gives up gluten it somewhat common for them to get pregnant even when $30K in fertility treatments don't do the trick. Infertility docs don't get ANY training on Celiac in school (or even wtih ongoing training) so they don't ever think to test their patients for it.

It's also noted that someone on the South Beach or Atkins diet who had a problem getting pregnant will get pregnant while on the special diet which someone here posted happened to them. I can not believe all these different ways Celiac manifests itself and when all is said and done, I don't believe only 3 million people will have it in the US. I think the number will be higher. I have a dear friend who was told she was going into early menopause at 26. I've been trying not to dx my friends and family as not to alienate them but I'd hate not to mention this to my friend if there is a remote possibility that she could have Celiac. Maybe I should print some of these posts and give them to her. Would that be totally out of line?

Floridanative, it would be well worth trying to convince your friend of this. I'm only 22 and doctors thought that I was going through early menopause at age 20. Of course they came up with other reasons besides that, but it can't hurt to try not eating gluten.

[floridanative]

Gosh I'm late in posting but my friend is seeing a Celiac specialist in two weeks. I'm so thankful I talked to her. Thanks to those who encouraged me to do so. It's hard since you don't want to alienate your freinds but this was too important not to tell her. If she doesn't have it great! If she does she should know before it's too late.

[ilstate]

Hi. I know I 'm a guy, but I can give my perspective. I found out that I had CS in the Spring of 2000. I got married shortly after that. I never really stayed on my diet until about 2.5 years ago. My wife and I were not trying to get pregnant, nor were we taking any precautions. We just had the attitude that when it happened, it happened. About six months after I went on my diet for good, we concieved. So from my male point of view, I was able to be fertile about 5-6 months after being my diet. I know there could have been other factors involved, but we are both convinced it was because of my diet.

Good Luck,

Brandon

[floridanative]

Welcome Brandon and we don't mind guys chiming in unless a thread says 'ladies only' and then I think if you post there you can be reported to the administrator. That said, thank you for your post and I know I was very surprised that both men and woman Celiacs can be infertile and once off gluten BOOM they get pregnant in six months or so. Totally amazing.

[heli]

After 8 years of marriage I still was not pregnant. Using fertility drugs I did get pregnant. I had very scary pregnancies with both girls. My placenta did not mature and my babies did not grow. I had c-section with both and complications with both. Lots & lots of trouble because of malnourishment so no ovulation and all those pregnancy problems. I wish I had known 20 years ago that I had celiac disease. I also ended up with a hysterectomy. Both of my daughters are very small because of celiac - short stature issues. Get that testing done. I think the easiest is the entero lab DNA. Besides that just get the basic stool test. That way you have the groundword for gluten or no gluten.

[heyho]

I am a celiac, was diagnosed as a baby and stick reasonably well to the diet, with no ill effects. I am attending a fertility clinic due to problems in conceiving and there are no obvious reasons why myself and my husband cannot conceive.

I asked my specialist if there was a possibility that my celiac condition could affect my ability to conceive or carry a child and he said it was extremely unlikely and that I was obviously healthy. However, it has recently crossed my mind that as celiac is considered an immune response, it could be causing immune issues in my body that prevent me from conceiving. Has anyone out there had fertility immune testing due to being celiac?

If anyone had any info for me at all I would be grateful. After several years trying to conceive, I am trying to exhaust all avenues. Thank you.

[Ursa Major]

Heyho, you said that you 'stick reasonably well with the diet'. Does that mean that you're not 100% gluten free? Because if you're not, if you still consume small quantities of gluten, you are NOT gluten free, even if you don't have obvious symptoms. Your villi could be damaged without gastro symptoms.

Why don't you try to actually completely, 100% avoid gluten? It is possible (no guarantee, of course) that you will conceive then. It would sure be worth it, in my opinion. Besides, you are doing damage to yourself by not staying away from gluten completely, in more ways than you might realize.

Welcome to the board, and I hope you will learn a lot here, and make new friends.

[Guest Babbia]

I am 30 and have had menstrual irregularities right from the get-go. I literally would only get one period per year. I have been gluten-free since October and and have had 3 periods since....so I am now only skipping one month. This is a huge improvement given that I was only getting one per year. Not one of my doctors tested me for celiac. Over and over I complained of fatigue and irregular periods. One doc even knew that I could not tolerate dairy (made me throw up).

Oh....and one more interesting tidbit....The only other time I had regular periods was when I went on an Atkins type diet 7 years ago (I get them so infrequently that I remember this brief period). I clearly remember getting 3 periods in something like a 7 month period and was excited about it. At the time I hadn't made a connection b/w the diet and the menstrual improvement, but now it all make sense.

I am curious as to what causes the irregularity in celiacs. Is it the malnutrition or is it something else? Anyone know?

Babbia

[heyho]

Thanks Ursula, no I am not 100% gluten free. However I have been during my previous treatment cycles, also avoiding dairy and nuts (just in case, due to family allergies), and this doesn't seem to make any difference to my health or to my fertility.

My question is slightly different, it is relating to immunological testing and its relevance to celiac/ fertility. Even if a celiac was on a 100% perfect diet, I wonder if there is still an immune response in the body that causes problems with fertility. I am having difficulty in having this question answered and was hoping I might find the answer here. I would appreciate if anyone had any information. Obviously I am also trying medical channels, but I am based in Ireland and immune testing is in its infancy here.

Babbia, I think the menstrual issues are mainly due to malnutrition.

[Alexandra]

Thanks Ursula, no I am not 100% gluten free. However I have been during my previous treatment cycles, also avoiding dairy and nuts (just in case, due to family allergies), and this doesn't seem to make any difference to my health or to my fertility.

My question is slightly different, it is relating to immunological testing and its relevance to celiac/ fertility. Even if a celiac was on a 100% perfect diet, I wonder if there is still an immune response in the body that causes problems with fertility. I am having difficulty in having this question answered and was hoping I might find the answer here. I would appreciate if anyone had any information. Obviously I am also trying medical channels, but I am based in Ireland and immune testing is in its infancy here.

Babbia, I think the menstrual issues are mainly due to malnutrition.

Sorry, I'm new here, trying to figure out how to respond to Heyho. Please forgive any technical difficulties...

Heyho, I am new to celiac (actually just trying to find out if I might have it), but dealing with infertility and autoimmune thyroid disease (both of those are definites for me). I wonder if you might have the latter and be hypothyroid, a common, treatable cause of infertility? Autoimmune thyroid disease (which tends to lead to hypothyroidism) is apparently more common in celiacs than in the general population, so definitely worth getting checked if you haven't.

[heyho]

Thanks Alexandra. How is this tested? Is it via an immune blood panel?

I have had so many tests and bloods etc at this stage, I know I have had my TSH checked (thyroid stimulating hormone). Not sure if this is relevant.

Ursula, after your post I have made a decision to go totally gluten free from now on and stop being wishy washy! I am also going to get retested and reviewed as I haven't seen a specialist since I was 10 years old (36 now). I am also hoping that the specialist might be able to clarify the celiac/ immune/ fertility question for me.

[Ursa Major]

Ursula, after your post I have made a decision to go totally gluten free from now on and stop being wishy washy! I am also going to get retested and reviewed as I haven't seen a specialist since I was 10 years old (36 now). I am also hoping that the specialist might be able to clarify the celiac/ immune/ fertility question for me.

That is a great idea. I am glad you're going to give it a try. Low constant levels of gluten in your body are almost as bad as high ones. Your intestines could be quite damaged, without the obvious symptoms. But the thyroid is a good one to check, too.

[floridanative]

10% of al infertile couples in the US has one partner with undx'd Celiac. The only way to get pregnant safely with Celiac is to be 100% gluten free. Once firmly on the diet it is common foer people to concieve in 6-12 months. Remember the male could have Celiac - not always the female. This info is proven and is listed in both Dana Korn's new book 'Gluten Free Living for Dummies and Dr. Peter Green's book 'Celaic Diesease: A Hidden Epidemic. Good luck!