Celiac With Fertility Issues

[KristaleeJane]

Hello

I have been sick for along time and recently have been diagnosed with Celiac through Positive bloodwork and Biopsy. I have been trying to get pregnant for 9months with no luck. I have been gluten free for 1.5mths, which is not that long, but my doctor seems to think that there is nothing wrong with me.

She knows nothing about celiac disease and didn't even know that infertility can be a symptom. She told me that if after a year of trying she would then look into it.

My cycles are not 28 days they are a lot longer, usually around 35-37 days long, and she said this is normal. I really think that there is something wrong. My doctor doesn't, I am very worried.

What should I do?

Thanks

[Adelle]

I would find another doctor!!!! I've been gluten-free for almost 2 years, and we have been TTC for 17 months. We were TURNED AWAY from 3 doctors because we were "too young to worry about having kids". We FINALLY found the infertility offices at OHSU. THEY took us seriously. Turns out we WILL need treatment, those other doctors just sucked!!

You could go for initial testing at least. For you that'd be basic bloodwork (fsh level, hormone levels, etc) and a HSG (the thing where they inject dye and take an X-ray to make sure nothing is blocked). For hubby that would be a semen analysis.

I think it would help to just have a basic workup. There might be NOTHING wrong (sometimes it just takes a while for some people), but there might be. You have a RIGHT to know either way!! Good luck!!

[Cherry Tart]

Hi - Sounds like it's time to find another doctor. Not to mention, I would also recommend waiting a 6-12 months before trying to conceive. It's best to let your system heal. Your digestive tract has been compromised/damaged from years of gluten consumption. There may very well be nothing wrong with your reproductive "parts" but Celiac can affect other parts of your anatomy that impede fertility - I'm sure that's what your Dr. doesn't understand. In most cases, fertility should be restored after adhering to the gluten free diet for an extended period of time. No cheating! And yes, what she said about your cycle is correct - not everyone has a 28 day cycle. I know it's very disconcerting to hear that anything outside of 28 days is OK. Once your system starts to heal, your cycle duration may shorten (it did for me). I suggest finding another doctor, getting another evaluation (for peace of mind) for you/hubby, and most important of all - giving yourself time to heal.

I'm currently going through fertility treatment too. I know how frustrating it can be....

After years of speculating that my having Celiac was the problem, we discovered that my non-celiac husband has some issues. It's a slim chance but worth a try! Good luck to you

[AliB]

Have a trawl on the internet and see if you can find some really good medical references that highlight this problem and the Celiac link - print them off and give them to her.

She obviously doesn't read up-to-date Celiac textbooks - although their symptom list can be limited, fertility problems will virtually always be listed.

My Mum was Celiac. She had 3 definitive markers. Diabetic at 15, anemic all her life and had me followed by a stillborn followed by 10 miscarriages!

Print this off and show her if it helps!!!!

The key is knowledge. The more you know about the disease the stronger your argument - and your confidence. Show her you know what you are talking about and just maybe she will start to pay attention. Don't let her arrogant attitude get the better of you!

I actually had a doctor just today admit that I know more about than she does. She did what I wanted and some.

[Amelia01]

There is a definite link between untreated celiac and infertility. Unfortunately though, most doctors (and even specialized fertility clinics) believe that the correlation is only malabsorption as a cause for miscarriage. As Cherry Tart has pointed out, the entire body is affected by gluten consumption. celiac disease is an immune disorder and immune issues and infertility go hand in hand. Luckily, however, following a strict gluten-free diet may restore fertility. After 3+ years of trying and many assisted reproduction treatments (and countless investigations on both my and DH's end) we were blessed to conceive naturally after 9 months being gluten-free.

There is little to no research available on the immune system disorders due to untreated celiac disease and fertility -- but Columbia University is supposedly now holding some trials in their IVF clinic.

Don't let any doctor try to make you wait -- nothing is worse than being told to be patient and wait and see. Keep up being gluten-free and look into the preliminary testing that Adelle spoke of.

Best of wishes to you -

Amelia

[KristaleeJane]

So I had my Hormones tested, and my doctor said they are fine. I am in the process of getting some of my vitamin and mineral levels checked now. I go for my physical middle of June also. I really don't know what else to do if everything comes back normal, she is going to say keep trying and I guess that is best thing to do considering I have only been gluten free for almost 2 months.

Thanks for the advise from everyone!