Infertility, Miscarriage, Our Infertility story

A shred of hope (maybe)

August 7, 2011

I just tested positive for celiac disease!?!  Crazy, right?  I was stunned when I got the phone call.  However, from what I understand, I have to wait for a confirmation of the diagnosis after getting a biopsy of my small intestine.

I recently came across two people who had suffered through infertility and then after going gluten-free (without a diagnosis, I think?), they both conceived.  So, I thought, what the hell, I’ll check into it.  After researching it, I couldn’t believe it — I had pretty much all of the symptoms, but there were a few I didn’t have.

My symptoms:

  • stomach/GI problems of all kinds (this is primary symptom)
  • muscle spasms / nueropathy
  • low iron / anemia
  • headaches / migraines
  • excema / excessive dry skin
  • bruise easily
  • malnutrition  / malabsorption of nutrients
  • infertility / early miscarriage
  • mouth ulcers
  • fatigue

So, I called my regular doctor and got tested.  They probably thought I was crazy coming in out of the blue asking to be tested for celiac disease.  So while all of this made sense for me, I was still surprised when they called me the next day and said I tested positive.  This is an autoimmune issue, and I already knew that I had some autoimmune abnormalities.

I went through a whole spectrum of emotions about it.  At first, happy because I thought *this* could be *it* — my infertility and loss problem finally revealed. There is a definite link between infertility and miscarriage with this disease, but it may still be in it’s infancy of knowing exactly why and having doctors be familiar with it.  Read more here. I felt angry and disbelieving that if this is what is wrong with me, then I have gone through all the losses for nothing.  Angry that doctors failed me for many years in diagnosing this.  Angry at myself for not figuring it out sooner.  Angry that it’s not standard testing before IVF. I feel like all of my babies died and it was so preventable. Then, I thought who knows, I have so much wrong with me, this is just one more thing.  I felt sad that I will have to give up my favorite food group – bread!   Unhappy that I will be the different one – the one that can’t eat out at many places, etc.  And, happy to know what is wrong with me finally!  Knowledge is power.

I always knew something wasn’t right, but doctors through the years have ignored my complaints about this.  Told me things like I should drink more water.  After time, I just got used to it and figured this was normal and probably how everyone was.  Wrong!  It’s not normal to feel bad after a majority of the meals you eat.  It’s amazing what you get used to.

My doctor is sending  me to see a gastroenterologist and a dietician. Also, I have emailed my reproductive endocrinologist about this new news to see what he thinks and if I get this under control with a strict diet, if he thinks I have a chance again?

I was feeling pretty down in the dumps the first couple of days, but now I’m just happy that I might have the opportunity to feel better and get healthy, even though it’s going to be hard. And, holding out hope that this will change our infertility outcome. And, of course, I have to wait for the blood tests to be confirmed.

My advice to you

As you can see, even though I had GI symptoms, I was led to believe everything was fine. Please read up on celiac / gluten-intolerance and determine if it might be something that is affecting you.  It affects 1 in 133 Americans and 97% of people with celiac go undiagnosed! If you have any question at all, get tested. It’s a simple blood test. Also, I read many people are asymptomatic, so even if you don’t think you have the symptoms and you are trying to conceive, just get the test. Why not?  It won’t hurt anything.  It’s just one more blood draw. Big deal.

Also, be aware that while many people don’t actually have celiac disease and will test negative, they still can have levels of gluten-intolerance, which makes it harder to diagnose. So, many people are in the gray area and a negative test doesn’t mean you don’t have a problem.

Questions for you

  1. Do any of you reading this have celiac or gluten-intolerance?  Any advice?
  2. Do any of you reading this have celiac or gluten-intolerance, have been trying to conceive and had success after going gluten-free?
Update (8/21/11)
My doctor doesn’t really think we should be that hopeful with this news.  He shared this information regarding a study: In that paper, there were 68 patient’s with celiac disease and 68 matched controls. The patient’s with celiac disease had a 15% pregnancy loss rate and the controls were 8%. After treatment the celiac disease patient’s had a 7% pregnancy loss rate. The paper concluded that celiac disease increases the risk of pregnancy loss and dietary therapy reduces that increased risk. These are odd numbers. 15% is the expected pregnancy loss rate in the general population and somewhat lower than the loss rate for patients who carry the diagnosis of infertility. Therefore, it is hard to understand these data. This is a very small sample size to develop broad conclusions on this association.
Also, here is another study a friend shared with me.
Update (8/24/11)
I went to see the gastroenterologist and they don’t think I have celiac?!?  So nice that my regular doctor told me I did.  I hate when doctors say things that they know nothing about.  But, to be sure, I am going to have an endoscopy/biopsy soon.  They think I have other GI issues, but we’ll do this test to make sure.  I plan to post more about this later.

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  • Brave IVF Girl

    Always good to have a diagnosis!

    I’ve been gluten free for almost three years. I wrote about it early in my blogging days, with a bunch of tips. http://bravingivf.blogspot.com/2010/04/going-gluten-free.html

    I’m quite expert at avoiding gluten (and cooking and baking gluten free), so holler if you have questions (or a craving you just can’t do without. 🙂

    I’m gluten intolerant, rather than celiac, and it’s unclear if it’s linked to my overactive immune system.

  • wow!! This is crazy! Why wouldn’t this be a test for all IVF clients!

    I have hashimoto’s disease( hypothyrodism)
    I am on medication for it..but I eat as much gluten free products as possible. I have found yummy gluten free chips, crackers, cookies, bread, pizza! really…you are not going to miss anything! There are products that are healthy and tasty. Udi’s bread, and whole food’s has lots of options. Quina made pasta is gluten free. Do not eat brown rice pasta..yuck. Try to stay away from sugar as much as possible. There has been some books i have read that say stay away from corn and soy. But my thyroid has been fine with those products. Cheese effects me a little. But I am sure there is a whole healthy diet for celiac. I really hope this is “it” that has been causing the challenge. I would be upset too.

  • A lot of the fertility newsletters I get advise going gluton free, dairy free, sugar free, caffine free.. it’s kind of standard. However I was so strict with this last year I landed up losing too much weight. This year I haven’t been as strict with myself, but go with rye bread instead of normal bread, I eat rice cakes, rice noodles, basmarti rice. I have had some blood tests done but not celliac – I have a slight thyroid problem and also some antibodies. So some things line up for autoimmune abnormalities perhaps. Will find out more after my lap if I have endo or not.But I do have a cyst for sure. Follow my blog for the next exciting installment. lol.
    I’m glad that you have found this out and hope that it will help you. I am sorry it is after all those IVFs and loses, but I guess we can only live and learn without regrets.

  • I was diagnosed with celiac over 20 years ago and have been GF ever since – feel free to email me if you want, I’m happy to share survival tips, product suggestions, etc…and I agree with Marilyn, Udi’s GF bread is the best, don’t waste your time trying the others. Also, the Betty Crocker GF mixes are quite good – esp the chocolate chip cookie and devil’s food cake – and available at almost all grocery stores. It’s SO much easier to be GF now than it was in 1990!!

    You’re right to feel hopeful – if you’ve been suffering from CD all this time, odds are high that it’s been contributing to (if not responsible for) your IF. And after you go GF and heal your gut, you have a much, much higher chance of getting and staying pregnant.

    You will have to have the biopsy to confirm the diagnosis, though. It’s not fun but it will give you a definitive answer.

    Celiac researchers are aware of the link b/t CD and IF but haven’t gone beyond establishing that link, and I don’t think REs and IF researchers are really paying attention to the connection at ALL. I wish REs were more holistic — our bodies are complicated machines and everything affects everything else — but it seems most of them don’t look beyond our lady parts.

    Good luck – I feel hopeful that this is the answer that makes the difference for you!

  • I think I have some gluten intolerances, so my husband and now I avoid gluten in most of our foods (have for the past year or so). There are so many great options out there now that are becoming more and more common in restaurants as well (like quinoa – yuuummm!!!). I work in two small-town restaurants – neither one of them is “trendy” or alternative, but both offer gluten-free options now. Hopefully you’ll find the same is true where you live!

  • Wow! I wish I had some advice or an encouraging story, but I’m pretty much exactly where you are. I have an appointment with a gastroenterologist next week for the same tests. I’ve always had gluten-related stomach issues as well (which have gotten worse with pregnancies.) After reading about Crohn’s and Celiac diseases’ relation to miscarriage, I started wondering if they might be a contributing factor in my issues.

    I recently had one positive test for APS- my first autoimmune red flag. I’ve got to wait about 8 more weeks to confirm. Also, I am currently having miscarriage #4- basically a chemical pregnancy, my shortest pregnancy to date, even though I was on the lovenox/asprin combo.

    It would be so amazing to find a solution! I’m keeping my fingers crossed for you!

  • Jess

    I think in your case this makes a lot of sense (and I bet there are tons of people it make sense for too.) You have this whole autoimmune history and had some of your best success to date after going on prednisone (which would reduce swelling.) This offers hope, but does offer questions about what to do about the future, which I know can be confusing too. Good luck with figuring this all out! I know the Infertility Cure has a lot of recommended diets in it too.

  • Oh, if this were the answer, how awesome would that be?

    I’m not celiac but I eat mostly a paleo diet and avoid grains in general. I do have the advantage that since I don’t have overt reactions, I can have cheat meals, but I still stick pretty grain-free most of the time. I actually find it easiest to avoid breads/pastas/etc in general instead of trying to find or make substitutions. It’s a HUGE change at first, but you actually become quite used to it and one day will realize you can’t remember why you ever thought wheat was so necessary.

    I do have a good recipe for coconut flour pancakes and gluten free cookies when you’re in the mood for a gluten free treat.

  • I hope this helps you know that you know and can (maybe) do something about it. I can’t tell you how many woman I know in the RPL world that have this problem.

    I have a client in NY (nutritionist)that went through tons of miscarriages and it turns out has celiac that reccomends all her clients be tested and also their were several other panels that went along with this that she suggests in regards to infertility and RPL. I know it has helped lots of her clients!

    I will be interested to hear how any changes help you.

  • Nataly

    Amazing! This is great that you are finally figuring out what was wrong. I was thinking a lot about you recently and happy to hear that you did not give up and there still hope…

  • Heather

    One of the bloggers I follow was diagnosed with CD after multiple losses and failed IVFs. She made changes to her diet did one final IVF with her own eggs and now has twins. Here’s the link in case you want to check it out:

    http://waitinginsunshine.typepad.com/blog/

    I hope this ends up proving you with some answers.

  • Oh I could talk forever on this! You may want to find a chiropractor/wellness center/nutritionist to help you. My son has been on the specific carbohydrate diet for 6 years to heal his gut from multiple food allergies and sensitivities, including gluten and casein (dairy). It runs in our family. My celiac niece had infertility and is now pregnant. Check out this book “Breaking the Vicious cycle” by Elaine gottschall. It saved my son.
    Hi. I’m Tracey from the Fertility Daily (ICLW # 56).I’m an IVF mom of two, who blogs for my old RE as my way of giving back. I’m on a quest to help others TTC, especially those who can’t afford IVF. East Coast Fertility’s giving away a free Micro-IVF cycle and you can enter to win thru 8/28 at http://www.eastcoastfertility.com/about/blog/blog-entry/archive/2011/august/article/ecfs-extreme
    -family-building-makeover-video-contest/?tx_ttnews%5Bday%5D=01&cHash=a6f7a8f9f3d38be671d74bd524251f81
    Good luck and I hope your baby dreams come true

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