Infertility

[happygirl]

I love Dr. Green's book! I highly recommend it!

heyho----I think your decision to go gluten free is a smart decision. Not only for you, but for your future children, knowing that they have a healthy MOM!

From what I know---- the Celiac reaction is caused by the ingestion of gluten. So if there is no gluten being ingested, there is no autoimmune reaction occurring (because there is nothing to set it off). I tell people that I am just as healthy as they are as long as I have absolutely NO gluten-no breadcrumbs, no cross-contamination, no touching something that touched bread and then touched my food. If I have any small amounts of gluten---then, its a different story

[Alexandra]

  heyho said:

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.

Heyho,

The anti-thyroid antibodies (there are 2 different kinds) are something any doctor can order, it's a simple blood test (by this I mean it's something any lab seems to be able to run fine; as I've learned in my medical journey, some tests are very specialized but these don't seem to be). However, I'm a big fan of seeking out good specialists as I believe that is the best way to maximize your odds of getting decent medical help (which as I'm sure most here know turns out to be harder than one would think). I found my thyroid doc using this website, and think she is great (except I now wish she'd recommended I get tested for celiac, sigh -- but she has been a huge help with my thyroid issues): Open Original Shared Link.

On TSH: many doctors, including many reproductive endocrinologists, aren't aware that since 2003, the upper level of the reference range for TSH has been reduced from 5.0 to 3.0. Or in plain English, until recently it was believed that TSH under 5 was OK but it's not; we now know that anything over 3 is too high. My own personal sense, actually, is that in the ttc crowd, anything over about 2.0 is pushing it, because pregnancy stresses the thyroid and may push one that was puttering along OK into a condition where it is unable to cope. And early in pregnancy, the fetus is totally dependent on mom for thyroid hormones, which are essential to healthy neurological development. So it is definitely worth finding out exactly what your TSH is and not just getting word that it is "normal;" it may not be, even if your doctor thinks it is. I can provide the cites on the new, lower reference range if you'd like.

Mary Shomon's site on thyroid is quite informative: Open Original Shared Link

Hope this is helpful! Good luck to you. -- Alexandra

[heyho]

Thanks so much Alexandra.

I really appreciate the info.

My TSH was 1.6 when I had it tested first Dec '04, then it was 2.9 in Mar '05.

What you have said would concern me (about anything over 2.0 being a problem for trying to conceive). I will speak to my doctor again. Soon.

[Alexandra]

  heyho said:

Thanks so much Alexandra.

I really appreciate the info.

My TSH was 1.6 when I had it tested first Dec '04, then it was 2.9 in Mar '05.

What you have said would concern me (about anything over 2.0 being a problem for trying to conceive). I will speak to my doctor again. Soon.

Heyho,

Sounds good, I would do that. The cool thing about thyroid problems is that they are usually very easy to treat, and treating them makes you feel better (neither is true for a lot of stuff people do for infertility!).

The noticeable change in your TSH in just over a year to me suggests an attack -- presumably auto-immune. I think this is well worth looking into and would definitely stress that you are ttc when talking to your doctor. GL to you.

I am not a doctor, BTW, so this is just one thyroid patient to another (potential) one.

-- Alexandra

[Guest BERNESES]

alexandra- My Gi told me that infertility is VERY common in undiagnosed Celiac's and that once you go gluten-free and have healed, your chances of conceiving are normal. It's untreated Celiac's that leads to miscarriages.

I know we PM'd about this as my tets back in September suggested i was going to need fertlity treatments, but as i go into my next round of hormone tests, i will have been gluten-free for over a year and am hoping that the numbers will change since i feel like I'm finally healing. I'll keep you posted! Hhugs to you, Beverly

[Alexandra]

  BERNESES said:

alexandra- My Gi told me that infertility is VERY common in undiagnosed Celiac's and that once you go gluten-free and have healed, your chances of conceiving are normal. It's untreated Celiac's that leads to miscarriages.

I know we PM'd about this as my tets back in September suggested i was going to need fertlity treatments, but as i go into my next round of hormone tests, i will have been gluten-free for over a year and am hoping that the numbers will change since i feel like I'm finally healing. I'll keep you posted! Hhugs to you, Beverly

Berneses -- GL to you and yes, please let me know what you learn. I hope it will be good news!

-- Alexandra

[Guest BERNESES]

Alexandra- How long have you been gluten free? It might change things for you. A hug and a prayer, Beverly

[Alexandra]

  Alexandra said:

Berneses -- GL to you and yes, please let me know what you learn. I hope it will be good news!

-- Alexandra

Beverly,

Thanks. I don't think I'm really even gluten-free yet. I started being gluten-free-ish one month ago and have had 3 definite "accidents" in that time (one meal I decided to eat anyway, one time I put a sauce on my food without thinking, and ditto when I got some crumbs on my thumb and -- oh the horror! -- licked them off before I thought about it. So two were really accidents and one was not). I'm not eating gluten and I am reading labels, but I'm also eating out at restaurants some and I imagine there must be cc issues.

I don't get the digestive symptoms many people here seem to suffer from. I do have a thyroid problem, which I know correlates with the celiac (and, when untreated, with infertility, which I know also correlates with celiac). I have right hip pain that I think of as sciatic which may get better when I cut wheat out of my diet (not totally sure, I've noticed that general pattern -- can't swear to it), and I had abnormally high liver enzymes (? ALT and AST) when some auto-immune screening was being done. The doctor I was referred to for the liver stuff did order three blood tests which he said would be correlated (at various degrees, some more than others) with celiac, if I have it. So anyway, I'm waiting for the blood results and trying to educate myself and working toward being gluten-free but really, probably not there yet.

-- Alexandra

[heyho]

Hi all, thanks for your advice.

I am following a gluten free diet. However, despite speaking to my doctor, she feels that my celiac disease has no relation to my infertility. This is due to the fact that I have regular periods, no obvious medical issues, and all of my tests are within normal ranges.

My question is, should I still insist on immune testing?

Because I have no obvious reactions to gluten, and have not had any since I was a teenager (I am now 37), I am concerned that even though I will follow a gluten free diet, I might still have immune reactions that I am not aware of. For example, I might eat something that has gluten in it, without realising it, and this might affect my fertility.

I would really love to hear from someone who does not have any obvious gluten reaction, but has resolved infertility issues by establishing if their celiac codition is an issue. Thanks.

[CarlaB]

I was fortunate enough to never have fertility problems (although I did have very difficult pregnancies) ... but I did teach natural family planning for 7 years and helped many with infertility who could be helped with low-tech methods to find out what their problem was. The method I taught (www.ccli.org) used temperatures and mucus signs. You can tell from the charts if it's a luteal phase deficiency (often accompanied by PMS), low thyroid, etc. It might not be a bad idea to look into it as you progress on the gluten free diet so you can see what's going on with your body as you heal. For example, a luteal phase deficiency can indicate low progesterone, which is needed to carry a baby to term. Scanty mucus (sorry guys, I know it's gross, but there are a lot of gross things discussed here!!), can be an indication of a vitamin A deficiency and can prevent sperm migration. Warning, this is another area where docs have little education. CCL has teaching couples all over the world, so there should be someone near you who can be of help. They are all volunteers, so would be happy to answer questions even if you don't take the class.

For those thinking "Didn't she say in another thread that she has six kids?" ... yes, they were all planned and the youngest is almost 8

[heyho]

Thanks Carla, I spent 2 years tracking my temperatures, mucus etc and everything seems to be in full working order - I am just not getting pregnant! I gave up on the charting about 6 months ago because it was making me crazy and obsessive!

I am meeting my consultant soon to express my concerns. We will see if he listens!

[CarlaB]

Sometimes charting can show a problem and is a good first step, sometimes it takes higher tech solutions. Sorry it's been so difficult for you. Infertility is a real tough thing to go through.

[ladyx]

  heyho said:

Thanks Carla, I spent 2 years tracking my temperatures, mucus etc and everything seems to be in full working order - I am just not getting pregnant! I gave up on the charting about 6 months ago because it was making me crazy and obsessive!

I am meeting my consultant soon to express my concerns. We will see if he listens!

has your husband been tested for celiac as well or tried gluten free...I am pretty sure from all the symtoms on both sides of my family that both of may parents have celiac (although they are in the denile stage and refuse to be tested) fertility problem could be his. Just an idea.

[karen123]

  heyho said:

Hi all, thanks for your advice.

I am following a gluten free diet. However, despite speaking to my doctor, she feels that my celiac disease has no relation to my infertility. This is due to the fact that I have regular periods, no obvious medical issues, and all of my tests are within normal ranges.

My question is, should I still insist on immune testing?

Because I have no obvious reactions to gluten, and have not had any since I was a teenager (I am now 37), I am concerned that even though I will follow a gluten free diet, I might still have immune reactions that I am not aware of. For example, I might eat something that has gluten in it, without realising it, and this might affect my fertility.

I would really love to hear from someone who does not have any obvious gluten reaction, but has resolved infertility issues by establishing if their celiac codition is an issue. Thanks.

Hi, I am having infertility issues also. I am in the same boat as you (gluten-free, but probably getting it from restaurants). I've had 4 miscarriages and just did IVF - it failed after implantation. They said that there is nothing that could be wrong with me, but I feel that Celiac could be playing a role in things. I'm constantly searching for info on WHY people miscarry with Celiac but haven't learned much. If you know anything, please share. I'm planning on going to see a specialist soon - either Dr. Peter Green or Dr. Joseph Murray. Have you heard of either MD?

[CarlaB]

If it failed after implantation, did they check your progesterone level? Maybe your progesterone is low, they can give you something to raise it so you can carry a baby to term. It's a problem that sometimes gets overlooked.

[ladyx]

  CarlaB said:

If it failed after implantation, did they check your progesterone level? Maybe your progesterone is low, they can give you something to raise it so you can carry a baby to term. It's a problem that sometimes gets overlooked.

One of my friends has that problem...she has had over a dozen miscarrages because her progesterone is almost nonexistant but has been able to have two beautiful boys that she carried to term with some herbs her midwife perscribed...but it hasn't been easy for her...she just had another misscarrage last month. If you realize that you are pregnat then you can get tested durning your pregancey...my friends progesterone is fine until about 6 weeks into pregnacy and then it just crashes. good luck

[heyho]

Ladyx, my husband and his family have no allergies whatsoever. They have no symptoms of anything that would indicate a need to test. His semen tests are great. Don't worry, I come from a family with allergies and would have him tested if I felt it was an issue. He has suggested that he get tested anyway, which I appreciate, and we may follow up on this. Thanks.

Karen, I am so sorry to hear about your issues in retaining a pregnancy. I havent heard of the doctors you mention, but I am based in Ireland, are you?

My progesterone is fine. I am sure that Karen has had progesterone support on her IVF cycle. Its pretty standard.

My GP has refused to refer me to a gastro-enterologist because she feels that sticking to gluten free will do the trick. I am seeing my fertility specialist in a couple of weeks to demand immune testing and will keep you posted! In the meantime I am doing pretty well on my gluten free diet. Thanks everyone for the comments and keep them coming!

[Alexandra]

  karen123 said:

Hi, I am having infertility issues also. I am in the same boat as you (gluten-free, but probably getting it from restaurants). I've had 4 miscarriages and just did IVF - it failed after implantation. They said that there is nothing that could be wrong with me, but I feel that Celiac could be playing a role in things. I'm constantly searching for info on WHY people miscarry with Celiac but haven't learned much. If you know anything, please share. I'm planning on going to see a specialist soon - either Dr. Peter Green or Dr. Joseph Murray. Have you heard of either MD?

Hi Karen,

I'm so sorry to hear about your losses.

Besides celiac, there are many other causes of infertility and miscarriage. There's a bunch of immune stuff they can test for. A reproductive endocrinologist I saw suggested starting with anti-thyroid antibodies and said if those came back negative I was probably OK (anti-thyroid antibodies are often a "marker" for other auto-immune problems). When mine came back positive, he also had me test for anti-phospholipid antibodies, which cause blood clots and late-term loss (their role in early losses is more debated). There is also a list of genetic factors, like the MTHFR gene (no, really -- even if the acronym does look a little risque) and Factor V Leiden, that can contribute to clotting, which can cause pregnancy loss. And thyroid problems (with or without antibodies) are themselves a (treatable) cause of miscarriage.

Some reproductive endocrinologists do, and some don't, believe in this stuff. If you'd like (especially if you'll post what state you live in, if you are in the US), I can try to find a recommendation for a doctor who does.

-- Alexandra

[tammy]

I wish I could find the source that presented the information about a correlation between celiac and low progesterone but I do remember its connection. I suspect that progesterone( the natural kind) is most critical to pregnancy and perhaps this fact will help you and others!