Although I’d like to think I handle the tough gluten-related topics on this site, it’s not too often I delve into actual “medical” discussions.
Why? Ummm…lawsuits, expensive trials, prison time and taking showers with a bunch of criminals would top my list.
Or maybe it’s because I just don’t think I’m qualified since I haven’t studied…you know…actual medicine. I know that doesn’t stop a lot of other bloggers from spewing nonsense, but I feel I have some responsibility to the community here. I’m a celiac and I know the crap that this disease is and that’s usually where my focus is and doing my best to educate and raise awareness.
That being said, I had the pleasure of meeting Kelly from GlutenFreeLabels.com last week. We communicated online for a bit, she sent me a sample package of her Gluten Free Labels (which I love and completely recommend to help keep you safe in the kitchen – discount code below) and it turns out she lives 20 minutes from the Dude ranch, so we met up for coffee.
Her celiac story, her inability to have children and how the two became connected had my jaw on the floor. So I asked her if she would be willing to share her story on this site because I think it’s an important one to tell.
Kelly said that if she can just help one person to conceive based on her story and her struggles, it will have made it all worth it.
With no further ado, here is her story, as told by her husband Ben.
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Celiac and Infertility
“We live our lives forward and understand them backwards.”
The person who first told me this quote was a Nun, since passed, but a chaplain at the CHOP, where my preemie girls were saved through prayer, love and a miraculous medical team. She was speaking to me as if to ease my mind on the “why God did this to me” aspect of going through such a traumatic event.
Everything happens for a reason, and we would soon understand it, but right now, we are subjected to living through it, suffering through it, and the clarity will come later.
We were no strangers to being “medically treated”. It was 2010, January, and we went through IVF treatment 7 months ago to get our twin girls for whom we were praying to survive. But the story actually starts a year earlier, when we had been trying to get pregnant for 2 years. Getting pregnant starts off fun, really fun, until, of course, it’s just not working.
A guardian angel entered our life that time. She was a landscape architect, a chatty suzy, but someone you warmed up to quickly and had no fear in sharing her story. She told us that she spent 17 years trying to get pregnant, before finding out that she had Celiac Disease, and it “might have been” impacting her ability to get pregnant.
She changed her diet, conceived, and delivered a baby. We had been through 2 miscarriages at this point, and listened intently to anything anyone said that might offer a reasonable shot at getting pregnant. So, we asked our IVF doc for an allergy test, to test for Celiac Disease, and sure enough, my wife had it. 6 months of a gluten free diet and another round of IVF later, and we had our twin girls, preemie, but they were here.
We don’t want to see anyone go through what we have. Our IVF clinic now tests for Celiac up front, sparing others the pain of a miscarriage. Our story has had an impact on them, and we have made some sense of our past because we know that they’re helping others.
But we’re go-getters, my wife and I. We don’t think people realize how bad “a little gluten” can really make you feel. Have you seen an intestinal lining of a person with Celiac Disease right after being diagnosed? Yuck, see to the right. We’ve created a product line around preventing cross contamination. We aim to spread awareness about living gluten free, and how to prevent people that eat gluten free from getting sick from “a little gluten”.
We’ve created attractive gluten free labels and silicone, oven/dishwasher-safe tags as a way to prevent cross contamination in gluten free kitchens. We feel that through proper organization/labeling and some new products we are introducing, we could make life a lot easier for households like ours forced to prevent gluten intolerant people and Celiac disease sufferers from getting sick.
So, we live our lives forward and we understand them backward. We are still coming to grips with why we had to spend 4 months at the hospital with our girls until they came home, and yet another 2 years with our daughter, Gianna, trached with 24/7 nursing care.
But we do know why we had trouble getting pregnant, and we hope you all benefit from the understanding of it. We are doing everything we can to prevent others from suffering the same trouble we did, shouting from the rooftop for them to get tested for Celiac before even trying to get pregnant.
If you are interested in hearing more about our story, stop by our family blog. We blogged our journey from pregnancy through having 3 now happy and healthy babes.
But more importantly, if you have Celiac or are Gluten Intolerant, we encourage you to stop by GlutenFreeLabels.com and buy labels and tags for your kitchen. Don’t let “a little gluten” get in the way of you getting pregnant or staying healthy.
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Hi. It’s the Dude again. How can you get the labels?
Simple. Just click the button below.
Use the coupon code BigSavings for 20% off your order. Compliments of Gluten Dude.
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Now if somebody would just make gluten-free labels for people, I could avoid this:
Stories like this are all too common!!! My GYN was actually the first doctor to believe I was sick, not crazy & point out i might have celiac. Even gave me the controversial blood test which came up strong positive.
While I feel so much better most days I regret what not knowing about celiac & believing doctors that said “there’s nothing wrong with you”. Miscarriages have robbed me of my fertility, celiac robbed me of so many more things. If the GI doc that did my colonoscopy in the 90’s had known what the “odd shaped villi” actually were, if the other GI doc that took out my gall bladder had bothered to check the simple as well as the complex…if, if, if
I am a firm believer that celiac & infertility are cause & effect. It is only cutting edge (very expensive) IVF docs that seem to know about this connection. With 1 IVF treatment being $15,000-30,000 there is a whole lot of financial motivation for them NOT to make that knowledge public.
Thanks for sharing this topic and story with us. There have been a lot of research studies linking untreated Celiac Disease to infertility over the last few years, but they have not gotten much attention. It has been published that between 5-8% of unexplained infertility is as a result of untreated Celiac Disease, which is mind boggling. Fortunately, fertility returns once a woman goes gluten free, unlike a lot of other problems associated Celiac Disease which may never resolve after going GF (such as secondary autoimmune problems and nervous system damage). How else can we spread the word about all of this? I am finding it difficult, personally, to sort through all of the information on the internet these days.
Thank you for your blog and the community you have built.
Your welcome Jess and yes…it’s hard to sort thru so much BS on the internet. We do our best to keep it real here.
Thank you for keeping it real on here!
I finally finished my blog post about the medical aspects of the effects of undiagnosed Celiac Disease on fertility. I had intended to post it shortly after yours, but had a difficult time finding time to write this week!
Here is the link, if anyone is interested in checking it out: http://www.thepatientceliac.com/2013/03/15/lets-talk-about-celiac-disease-and-infertility/
Jess
Great Article.
Thanks so much for all you do! Truly its hard to get to the bottom of whats right and whats wrong! I think I have finally found a site I can go to for all my answers.
Living with Multiple issues growing up, I was told 8 years ago at the age of 22 I would not be able to have children indefinitely but with no reasoning.
Years later, I herniated 2 lower discs in my back 2 years ago at the age of 27, with no reasoning again from my Dr. — after this occurred I started to do research on my own — very quickly learning that I was probably Celiac. I have been Gluten Free now for 1 year and 4 months, after realizing MYSELF that infact I have Celiac Disease and that is what has been making me sick for 20 years.
GREAT NEWS!! I am now pregnant! Amazing… I truly thought I would never have kids.
Never has a Dr. mentioned that my infertility could be connected to Celiac or Visa Versa! I knew I had Fertility issues, stomach problems, depression, malabsorption issues… and to think they were all related to the FOOD I was eating everyday.
I cant believe that there are still Dr’s and Medical Staff out there that don’t have a clue about Celiac, and the connections it has to the body and so many other issues. My life has changed since going GF, I am no longer sick, sad, sleepy, sore, and confused….I Have My LIFE BACK!
I tried for 2 years to get pregnant (35-37 yo at the time). I finally gave up. Diagnosed with hypothyroidism at age 40, ovarian failure at 41, anemia at 44, and finally celiac at 47. I believe celiac was the root cause of all of this.
Darlena, I’m so sorry to hear this. I feel like your story is all too common. Just last week, we met a couple who tried unsuccessfully and then found out 18 years later that she had Celiac. It should be on the checklist for fertility treatment’s intake form. We are very blessed to have our kids, and will never forget it.
For anyone interested in learning more about this, the NFCA did a webinar focused on women’s reproductive health & celiac disease in February. It’s archived now, so you can find it here: http://www.celiaccentral.org/webinars/archive. The NFCA also apparently has a whole education section devoted to the topic here: http://www.celiaccentral.org/education/Women-s-Health/438/.
Alice Bast, the founder, apparently struggled with reproductive symptoms herself. I too would love to see more awareness about the connection. Thanks for pitching in, Kelly and Gluten Dude. 🙂
Thanks much for the info Molly…
Molly, you are very welcome. I couldn’t believe that we would have to go through 2 miscarriages before having to be tested for allergies. The financials are messed up. A simple blood test, usually covered by insurance vs. a bank account crushing IVF procedure. How could they let you do a round of IVF before testing for this? It’s absurd. As we learned with our daughters, the only advocate you have for your health is YOU, so you must educate yourself and ask the right questions.
Oh, and now is the time; I am definitely buying my labels. Discount? I’m there. Thanks!
This is a great, informative blog that really helps people put Celiac’s Disease in proper perspective. We thought you might be interested in the new FoodFacts.com Baby & Toddler Nutrition Guide, designed to help parents make the healthiest food choices for their little ones. You can find it here: http://www.foodfacts.com/foodfacts-baby
You know this is just an ad to sell a book. Not sure how accurate it is. I linked to it thinking it was a ” helpful” website. Went to ” allergies” and got the info for ordering the book.
Yeah…I know. It was a fine line between helpful commentary and spam and I let it slide. Thanks for checking up on it. I friggin’ love this community.
🙂
Lima Bean has a built- in spam detector.
I was hoping it would be cute little site with helpful info. Maybe recipes for kid- friendly foods that the little Beans might like. Instead, its just an ugly spammer. 🙁
I am so glad this story had a happy ending. And I am glad that you are all raising this issue. If you can help one couple to realise the connection to infertility it will be a wonderful thing.
I am blessed with 2 children now, and I think my lucky stars and whoever else will listen every day that I have them in my life. But I have had multiple miscarriages as well, which I believe to be linked to my undiagnosed Non Celiac Gluten Intolerance (which seems to behave remarkably like Celiac Disease). I had them both before diagnosis, and had terrible pregnancies both times, was housebound for months and was so immobile I had c-sections both times. The illness also meant, I believe, that I took months to recover.
In the UK I think it is now suggested that women with infertility should be tested for celiac. I was never asked, the doctors just told me I was overweight or getting too old and that ‘nothing is wrong’.
So many women (and of course their partners) have so much pain around infertility and miscarriage.
Keep spreading the message
Mw
We totally will. 🙂 Just curious. Did you change your diet, then get pregnant with kids? If so, how long after your diet change did it take for you to get pregnant?
I am thrilled for your happy ending and that someone was wise enough to suggest celiac to you as being a possible culprit. Good for you for spreading the word!
I suffered multiple miscarriages and never could carry to term, much to my deep sadness .I also had the early peri-menopause from hell and a total hysterectomy at a young age, due to many complications.
If I only knew back then what I know now, my life would have been vastly different.
But we cannot go backwards and alter our paths.
My mission now is to spread celiac awareness and perhaps prevent others from going through what so many of us have had to endure.
The irony of all this that my current GYN is married to the doctor who ran the fertility clinic I went to back in the late 90’s. They did not test for celiac back then, but they do now. I told my doctor after I was diagnosed about the connection between miscarriages, infertility and other GYN issues and celiac. It was –as she put it–a” revelation” to her and it explained so many things she had never considered while treating women for infertility, early menopause. endometriosis, fibroids, PCOS, chronic pelvic floor pain,or even persistent yeast infections, etc.
Celiac can wreak havoc in ways many doctors do not ever consider. It’s up to us to clue them in, I guess.
Best wishes to you!
.
I wasn’t gluten free when I conceived, as I didn’t know then. I was wheat free, mostly. I did clean up my diet, and took supplements recommended by a book by Zita West in the UK, a fertility expert who combines mainstream and more alternative approaches (not an advert, promise). I also did a lot of relaxation work. I was a mess. Took about 4 months 1st time, after 6 months of miscarriages, nearly a year 2nd time, and more miscarriages than I care to remember.
My hormones have totally changed since being gluten free, after 30 years of problems, especially since switching to whole foods via the Whole30 (thanks Dude 🙂 ).
I was only able to carry my first baby to term.. my daughter… the other pregnancies always ended in a miscarriage. The doctors always told me that my body was rejecting my babies. When my daughter was grown and trying to have children she suffered two miscarriages. Her doctor suggested that she was miscarrying because I had and that maybe it was hereditary. I had been diagnosed with celiac several years before and looking at her saw her heading down the same path health wise so I talked to her about it. When her doctor diagnosed her with malabsorption syndrome she finally decided to go gluten free. 1 year later she became pregnant. Our whole family believes that she is able to hold onto this pregnancy because she is gluten free. We are all so careful about keeping her safe. It looks like the baby will be born in june and so far he is a very healthy baby. So yah… our family says that celiac disease does cause infertility. and btw Kelly and Ben, those are some beautiful babies you have there…
Honestly, I think we’ve only scratched the surface of how many bodily functions are affected by Celiac disease. I don’t doubt for a minute that fertility can be, and is, affected by untreated (i.e. still eating gluten) Celiac.
I am currently trying to figure it all out, havent been diagnosed with Celiac but told to go GF to help abdominal symptoms, but now have skipped multiple periods without being pregnant. Is this a problem that anyone else has had also?
Do you mean that you stopped having periods AFTER going gluten-free? If so, here are some half-baked theories: Is there any chance that in cutting out gluten-containing foods you introduced a vitamin deficiency of some sort that is causing missed periods? Or that you’re just not eating enough because you’re avoiding things with gluten? OR that you’re stressed about the gluten-free thing and the stress is causing it? (Boo, I know, not the “just stress” hypothesis. But it is true that stress is really, really unhealthy in a lot of ways.)
It was last year like maybe October since the last one, I started GF in mid February, so its possible it hasn’t been long enough? Stress is always a possibility, i’m going to see my gyn this month so I’m sure we will discuss this in full. I just wondered if they were related, most of what I have found has stated loosely connected, one site says 19% more likely to have amenorrhea. Thanks for the thoughts.
Oh, okay, if you stopped having them before going gluten-free that’s different. Actually the same thing happened to me. I’m assuming that for me it has something to do with celiac and waiting to see if it resolves along with my other symptoms. (I’ve only been GF since January, though it seems like it’s been much, much longer!)
It does seem like way longer, probably cause the yummy gluten food is everywhere all the time and constantly avoiding is tiring! it has barely been three months and I’m like geez seriously? it feels like six months.
Thanks for helping her out Molly. Your support is what makes this community so frigging awesome.
Great question and the answer is a big yes. If the mother doesn’t have enough quality nutrition throughout her pregnancy, the children will suffer and they will also pass it along also. And its not genetic in any way. It is mainly passed along by breast feeding. Gluten has an effect on multitudes of health issues and will continue to do so.
Thank you for writing this article!
I haven’t been able to conceive in four years (I’m only 23) and after operations etc an tests on my partner we were told we were both fine and being referred to IVF in august. I wasn’t keen on the idea as I wanted answers! I’m always unwell, can’t put on weight even though I eat loads it jut doesn’t happen, always tired an feel drained.
Well, I went back to the docs with a list of my symptoms and she’s done a million bloodtests for different things, one of them being celiac to which I replied “oh my mum has that.”
My mother was only diagnosed mid last year and has had 5 healthy children, does the disease just sprout up when it feels like it?
My test results are due back next week, I find it so daunting and I’m so angry that they didn’t test me earlier, all the pain of not being able to conceive for so long and not having any answers what so ever! And then the thought of having to give up the food I’ve eaten (and love) for 23 years…
I suffered with infertility, and then had to have a hysterectomy in my mid-30’s, BEFORE I finally found out I had celiac disease. Definitely get checked for celiac, and go see a licensed naturalpath if struggling with unexplained infertility.
Wish I had known I had celiac 10 years ago! My husband and i went through one miscarriage after another, a total of 13 pregnancies. Thankfully, we have 3 healthy daughters! We could certainly have saved ourselves a lot of heartache and frustration if we had only known. Thank you for your post! Hopefully more people will become educated on the side effects of celiac and spare themselves this particular pitfall.
And yet a study just came out throwing doubt on the connection. I’ve heard too many stories to believe otherwise.
Hello
This post is very fascinating. My husband and I (both 32) have been actively trying to conceive for over 4yrs now and we’ve been through numerous avenues trying to achieve our dream of having children… we’ve been doing IVF for the past 3 yrs and we’ve experienced a miscarriage and many negative results with IVF. Just last year in November we received yet another negative cycle with disappointing results. My husband and I were shattered, we’re at a standstill now as we don’t know what path to choose next. Until… I started feeling ill and visited the local GP for some advice. She has requested a blood test to test for numerous things, celiac being one of them. So I did some research and came across your website / blog… I am SO anxious to get this blood test and results to see if gluten intolerance has anything to do with my “unexplained” infertility. Its all very overwhelming… so its helpful to read other stories about infertility issues. Thank you
Celiac does cause unexplained infertility. My life is living proof lol. My entire life I was always sick and being hospitalized. Throwing up and falling asleep anywhere all the time was normal for be. People thought I was lazy and what not. But when I was 22 I was diagnosed with severe celiac disease. I had been trying to become pregnant for several years by then, with my husband. As soon as I changed my diet I became pregnant within less than a month, but lost the baby at 9 weeks because of the severe damage done to my body. I was extremely malnourished and my body simply couldn’t support a baby at that time. Trying for years to only lose your first pregnancy. It was very hard. But after 3 months of waiting we tried again and became pregnant that same month ^_^ we have a 2.5 year old, healthy baby boy named Nathanial! Since celiac disease is genetic we will keep an eye on our little one for symptoms. Hang in there girls! It doesn’t hurt to get tested.
Hi Sarah!
My husband and I have been trying to conceive for a little over 1.5 years with no luck even with Clomid. I’ve been gluten free (diagnosed Celiac) since 2012 and I’m really strict as I get violently ill if I get “glutened.” But I was just like you! I’m wondering, with cutting out gluten, did you get cross contaminated at all? It’s almost impossible to avoid and usually, if I do, it’s a crumb from my husbands bread (that’s all it takes). I’m just wondering if that could have an effect on our fertility. We go into the Fertility clinic February so hopefully they can also shed some light!