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Celiac Disease and Fertility/Reproductive Health Issues

Over the past weekend, I found myself in a social setting with several obstetricians and I thought it would be a great opportunity to talk about celiac disease.  Parties are wonderful for launching conversation about gluten sensitivity because it is pretty darn obvious that something is different when you show up with your own gluten-free food!  People are naturally curious, so when they ask why I bring my own food, I am more than happy to talk about gluten sensitivity (quite often, “till the cows come home”)! ;-)

When one of the doctors asked me about Sam’s celiac disease, I seized the opportunity to ask the group of OBs if celiac disease screening is on their radar for patients, especially those battling fertility issues.  I really thought this would be the beginning a great discussion but I was quickly disappointed when one simply responded with what does fertility have to do with diarrhea? then promptly changed the subject.

The encounter has bothered me quite a bit over the past few days, especially given the fact that I went undiagnosed/untreated for celiac disease and dermatitis herpetiformis for 25+ years.  Outside of my phenomenal endocrinologist, none of my many physicians, over the course of my lifetime, ever thought to test me for the root cause of all my atypical celiac symptoms and I presume that is because I did not suffer from any GI complaint, such as diarrhea.  The Following is an excerpt from the Gluten Intolerance Group of North America (GIG) (emphasis added):

Most physicians recognize the classic symptoms of celiac disease : diarrhea, bloating, weight loss, anemia, chronic fatigue, weakness, bone pain, and muscle cramps.  Physicians may not be aware that celiac disease frequently presents with other symptoms, some that do not involve the small intestine.  More often, symptoms can include constipation, constipation alternating with diarrhea, or premature osteoporosis.  Overweight persons may also have undiagnosed celiac disease.  Children may exhibit behavioral, learning or concentration problems, irritability, diarrhea, bloated abdomen, growth failure, dental enamel defects, or projectile vomiting.  Others will have symptoms such as rheumatoid conditions, chronic anemia, chronic fatigue, weakness, migraine headaches, nerve problems such as tingling of hands or difficulty walking, or other conditions that are unexplained and/or do not respond to usual treatment.  People may have one or more of the above symptoms. Patients are frequently misdiagnosed as having ‘irritable bowel syndrome’, ‘spastic colon/bowel’, or Crohn’s disease’.

Just a few of my atypical symptoms growing up:  Headaches (diagnosed with Cluster Headaches), Mouth Ulcers (Canker Sores), Impetigo on my scalp (I believe this was a misdiagnosis for Dermatitis Herpetiformis), Eczema, Psoriasis, ADD, Depression, Irritability/Aggression, and Fatigue.  I also suffered from agonizing nightly muscle cramps (a.k.a. “Charley Horse”) and a severe environmental allergy to grass (which is what my dermatologist and allergist attributed that pesky little rash on my knees to, instead of DH).

Consequently, in addition to now knowing that I have celiac disease and DH (both biopsy-confirmed), I also have Graves’ Disease, and I am awaiting positive confirmation for Hemochromotosis (Iron Overload).  Back in the fall of 2009, I was also told by my Gynecologist that, at the age of 35, I had entered the early stages of menopause.

The following is a excerpt from the Fall 2009 issue of Allergic Living Magazine:

It’s not known exactly why some women with celiac disease have fertility issues, but studies have shown that those affected often have delayed onset of their periods, early menopause and miscarriages. Of close to 2,000 women who took part in the Canadian Celiac Health Survey, the findings of which were published in 2007, 14.5 per cent said they had difficulty conceiving, and almost a third of the participants had had miscarriages. Celiac disease is also believed to affect men’s sperm counts.

Which brings me to the point of this post.  While there has been significant improvement in celiac/gluten-free awareness over the past few years, it is still off the radar for many healthcare professionals (especially when the patient does not present with classic symptoms like diarrhea), which is why we, as patients, still need to be our own advocates.

I would like to share the following video of Alice Bast, Founder and President of the National Foundation for Celiac Awareness (NFCA), where she shares some of her own heartbreaking ordeal with fertility and undiagnosed celiac disease (it took 23 doctors before she was finally diagnosed with celiac disease).

I will add to what Alice mentioned in the video about losing her mom to pancreatic cancer; my uncle (my father’s brother) lost his life to non-Hodgkin’s Lymphoma (a cancer linked to celiac disease) in 2007. While he was never officially diagnosed with celiac disease, given the fact that his niece and great nephew have it, I will never be convinced otherwise.

For more information on Pregnancy and Celiac Disease, read the following scientific research articles, (and don’t be afraid to share them with your healthcare provder):

Celiac Disease and Pregnancy Outcome PMID:8677936

Coeliac Disease and Reproductive Disorders PMID: 20017709

Coeliac Disease and Unfavourable Outcome of Pregnancy (Gut 2000;46:332-335 doi:10.1136/gut.46.3.33)

Women and Celiac Disease: Association with Unexplained Infertility PMID:17592443

Diagnosis of Celiac Disease in Pregnancy and Puerperium PMID: 11942914

Serological Testing for Celiac Disease in Women with Endometriosis PMID: 19400413

Maternal Celiac Autoantibodies Bind Directly To Syncytiotrophoblast and Inhibit Placental Tissue Transglutaminase Activity Reproductive Biology and Endocrinology 2009, 7:16 doi:10.1186/1477-7827-7-16

Primary Miscarriage as a Rare Presentation of Celiac Disease PMID: 20537625

Celiac Disease and its Affect on Human Reproduction PMID: 20337200

Is there a correlation with celiac disease and placental health or low PAPP-A levels?

Be Vigilant for Patients with Coeliac Disease PMID: 19938558

Shirley over at GFE wrote a recent post where she shared some EXCELLENT information about gluten sensitivity and fertility/reproductive health, including some of her own personal journey.

I would like to highlight one of Shirley’s links here, to a post on Sure Foods Living.  The following post was featured in Alison’sAsk the Doc” series with Dr. Jeffrey Aron, and it is on the subject of Celiac, Endometriosis and PCOS.

Vanessa Maltin, also wrote a great article on her blog, Celiac Princess titled, “Special Investigation: Celiac Disease and Reproductive Health.”

Heidi Collins, former CNN anchor:

Do you have a personal story with reproductive issues and undiagnosed gluten sensitivity?  If so, please consider sharing your story in a comment box below, we can all truly learn from one another. :-)

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Comments

  1. Heidi

    Such an important post. Three miscarriages, 'early peri-menopausal symptoms', hair loss and white hair in 30s, DH, Rheumatoid Arthritis, depression, weight gain issues, no celiac diagnosis until my 15 year-old was hospitalized for diarrhea, dehydration, ulcerative colitis and finally after much begging for the blood test and the results of the colonoscopy, celiac disease. Kids got the diagnosis first because their CD symptoms were the more typical GI kind. I learned thru DNA test that I was at high risk for CD and all the pieces fell into place.

    Wendy

    • Wendy,

      Thanks so much for sharing your story! And holy crap, you have been through the ringer! Isn't it amazing what a relatively "simple" change in diet can do? I say simple in comparison to drugs, surgery, chemo, etc.

      It was my diagnosis that led to my son getting diagnosed so early, a mother/child bond is something else, isn't it? ;-)

  2. Alta says:

    You do such a great job with these types of informative posts. Great information. My sister has PCOS (I suspect I do as well), and while both of us are not clinically diagnosed, we seem to be even more sensitive to gluten than my father, who is a diagnosed celiac. His lack of diagnosis until he was in his 40s meant that he dealt with a lot of years with GERD, ulcers, and misdiagnosis of IBS. He also has Type II Diabetes, recently diagnosed. His father suffered from DH-like sores and Type II Diabetes most of his adult life, even though the man had never been heavy a day in his life and ate healthily. We've attributed it to undiagnosed celiac disease as well. I'm still working through additional food allergies myself, and hope that while I'm 30, that I'll manage to reverse or prevent a lot of the more serious diseases that follow celiac disease!

    • Thanks Alta! Kudos to you for going GF, even without a positive diagnosis. I really believe in my heart that if a person has a known relative with diagnosed CD, it is wise to consider going GF. Despite what many "authorities" say, the gluten-free lifestyle is far from unhealthy (but any diet is what you make it). BTW, I made your beet/orange salad…so good!

      xoxo

  3. Becky Stow says:

    My brother just emailed me this interesting article. http://www.techvert.com/toxic-trio-identified-as-
    Wonder where this discovery will take us.

  4. I shared this on Shirley's post and you know this too, but I will share here that I also suffered from 3 (and possibly 4) miscarriages. One before my first pregnancy and the 2 (possibly 3) before my second pregnancy. It was not until I was completely gluten free (and mostly grain free) that I was able to stay pregnant with my second child. My OB said it was a total coincidence and that one had nothing to do with the other. But knowing how amazing I felt after going gluten free and how all of my other health issues disappeared once doing so (even though I do not have Celiac Disease), proves that gluten had much to do with it!

    Great post, my dear! As usual, you are doing an amazing job of bringing awareness!

  5. iLiveinmyLab says:

    Believe it or not my gynecologist actually sends quite a few of his patients in for CD screening because of infertility issues! Slowly but surely doctors are eventually going to get educated, and next time you get the "what does diarrhea have to do with infertility?" comment feel free to stab back with the, "Well what does malnutrition have to do with infertility?"

    • Lab woman: ;-)

      My gyno does too. She really was interested in listening and learning from all my speals! She has since told me that before she refers a patient to a fertility specialist, she screens for CD. She has caught a few cases where the women were able to get pregnant on their own after a year of being GF (and they saved thousands of dollars on fertility treatment! Yea!! :-)

  6. This is a great post Heidi! I had no idea about the link to fertility. Though it completely makes sense.

    I've not been taking my gluten intolerance diagnosis very seriously, after reading that list of sysmptoms. I need to clean up my act. Thanks for the info.

    • Kristin,

      I know how hard it can be in the beginning to fully commit to something this drastic for life, but if you will trust me and grab my hand, I promise it will get easier (almost stupidly so), and you will reap so many benefits. I have to laugh at myself for making it as difficult on myself as possible. It is all in the art of "letting go."

  7. Anna says:

    Superb post Heidi as always. My sister has fertility issues. Not cool.

    • Anna,

      While I did not have fertility issues (seriously, of all the things I do have, the lack of that one shocked me!), being a mom, my heart breaks for women who have struggles, especially for something as potentially "simple" like food. You are right, not cool.

  8. Absolutely outstanding post, Heidi! Thanks for sharing my link. I just shared a little, but you laid all the cards on the table for all to see–bravo! I know this post will help many, many folks.

    Alice Bast is phenomenal, isn't she? She turned her heartache and struggles into a foundation that has helped so many folks and continues to do so every minute.

    Heidi Collins' video is great to share, too.

    Other than what I shared in my post, my list of issues I had before going gf is very long. Sometimes I can't even remember all my previous troubles now that they are behind me. You and I shared many. In addition to the ob/gyn issues I cited in my post, mine (in no particular order) were all the GI issues; daily headaches (sometimes migraines); canker sores; the Charley horse thing and later restless leg (which I still have if I get glutened); gall bladder removal (organ issues are a sign–appendicitis is often the first major symptom per the previous medical director for our GIG group); tonsillectomy in my 20s (tonsils are our toxic waste dump); irritability; mild depression; fatigue; joint pain (to the point I didn't want to go up and down stairs); insomnia; carpal tunnal symptoms; tingling/neuropathy-type issues; compulsive eating; and more. Since being diagnosed as gluten intolerant (and recently finding out I do have the celiac genes), I also found out I was hypothyroid, have adrenal fatigue, and insulin issues. However, most of my issues are completely resolved and only reappear if I get glutened. Whenever there's a post on blogs and gf forums asking what symptoms did you have before going gluten free that have been resolved, the lists are amazing. No two are alike. Celiac/gluten issues, especially with the accompanying malabsorption, does a huge number on the body … that's for sure.

    Thanks so much for this post, Heidi! I will be sharing it with many.

    Shirley

    • Shirley!!!

      You are one of my greatest inspirations for sharing this information my dear. I do hope that our posts like these are helpful to someone and can spare them from some of the pain, loss, frustration, etc., etc., that many of us have gone through. I just love our community and my heart goes out to everyone in it. We understand each other like no one else really can.

      I love Alice Bast, such an amazing woman to turn her loss into a gain for so many others. And Heidi, I have always admired her (and not just for her very cool name!).

      Ya know, we really do have A LOT in common!! My gramps (my dad's father) had restless leg syndrome too. I have also had problems with tingling/neuropathy (I had forgotten as well). Thank you for sharing all of this Shirley, and I am so glad that you not only went GF without the biopsy (and stayed faithful), but that you were able to answer some very important questions for yourself with MyCeliacID, It is extremely important to know our medical family tree, for future generations.

      Much love and BIG hugs!!

  9. Maggie says:

    Excellent and so very thorough. You are an amazing advocate. Thank you.

    Pete's Dad died of cancer when he was just 67. Pete and I truly believe he had undiagnosed celiac disease (Pete's sister and his Dad's sister also have celiac). I will never take a gluten intolerance diagnosis lightly. And I have a hard time biting my tongue on this issue! I will definitely pass this along. xo

    • Maggie,

      I am so sorry about Pete's dad, my uncle was 68 (and my dad is 65 and I am worried). Any form of gluten sensitivity should be taken very seriously, no doubt about that! xoxo

  10. Michelle Olejar says:

    Thanks for an amazing post! All my life I have had issues, and from the very beginning I have believed there was one central cause. I have a great doctor that once said "Michelle when most people hear hooves they think horse, you however are always a zebra" So I have gone through my life a zebra and have pretty much had to determine and prove all of my issues. At age 15 I started preserving my fertility to have children, as I was diagnosed with PCOS and endrometriosis. I went through countless procedures, drug therapies, etc. and thankfully was able to have 2 beautiful children but had very rough pregnancies as far as eating was concerned. When my youngest was 14 months old I had a hysterectomy. My oldest was diagnosed with autism at age 4 and we started the process of trying to figure out what his gut issues were. Even though blood tests were negative, we went gluten free with him because I noticed that certain foods did make him feel worse. It has helped a lot. At age 3 my second son started showing issues and we again tested him and ended up putting him on gluten free. I had myself tested after doing a lot of research and too was found to not have celiacs by the blood test…but once again I am a zebra and therefore the tests don't always apply. So I have gone gluten free. To my amazement A LOT of things have changed for the better. I can't attest to the female issues because I have no equipment. I can however say that headaches, hand tingling, canker sores, bowel issues, and more have seemed to amazingly disappear. My Endocrinologist has been lowering my thyroid replacement since going gluten free because my blood tests keep show I am too high.

    To wrap up my comments, I want to say that I believe I do have celiacs even though I do not have a conclusive diagnosis. It is a no brainer to me that if you have multiple auto-immune disorders, the addition of another one is not to far fetched. I also believe that there may be some connection between autism in children and their mother's celiac, but again I think multiple causes on that is likely. Thank you for an awesome website. I do enjoy reading all your interesting posts and trying your wonderful recipes. Keep up the good work!

  11. Lisa says:

    Wow. Yes, I know I'm gluten intolerant. I had terrible tonsillitis and a tonsillectomy as a child, a belly from an early age, growing pains, frequent nosebleeds to about age 10 (which I've read can be gluten related), brain fog, sleepiness/food coma after eating… what I now realize was after eating wheat, and later, depression, weight loss, then huge weight gain, bloating up, stomach pain, high blood pressure, racing heart, borderline blood sugar, a spot of tooth enamel decay which is very strange looking (on my incisor, no less) and that docs said was due to penicillin (um, no, I doubt it…) and on and on, oh rage/anger issues. I'm sure I'm forgetting another dozen! An IgE test revealed my allergy to wheat. I have played around since July 2010, but I have finally cut out gluten for good this last month. It is no longer worth it to me to have a roll, etc. I like feeling this good.

    As far as infertility, yes! My only daughter is 8 (also mildly autistic… she isn't GF yet, nothing showed up on testing and I haven't seen any signs of gluten intolerance or CD but she DOES avoid most gluten now and might end up GF sooner than later). I have not been able to conceive without preventing for… oh, about 6 years now.

    Thank goodness I'm feeling better, losing weight, much more energy, and maybe everything else will straighten up over time.

  12. Angelique Matthews says:

    Here’s a shocking piece of information: Hashimoto’s, an auto-immune disease in which your immune system attacks your thyroid and if left untreated will destroy your thyroid, is typically not diagnosed by the general medical community in the USA. Reason, they call it low thyroid and treat your symptoms of low thyroid instead, completely ignoring the fact that your immune system is attacking and destroying your thyroid. This disease is exacerbated by ingesting gluten.

    I went undiagnosed for 10 years after visiting specialist after specialist. One of them being a fertility specialist. We were never able to conceive and could never figure out why. Neither could the professionals. I was eventually tested for Hashimoto’s after 10 years and never told I had Hashimoto’s Disease because my doctor felt that telling me I had low thyroid was sufficient. I heard through her nurse a year later that my test results from the previous year showed Hashimoto’s Disease. I immediately switched to a doctor who understood Hashimoto’s (rare) and within one month started feeling like a human being again. Unfortunately the help came too late for my husband and I to have children.

    If you are told that you have low thyroid, INSIST that your doctors test you for: Antithyroglobulin CPT Code = 86800, or Lab Core code 006692
    Thyroid Peroxidase CPT Code = 86376 or Lab Core code is 006676. Most low thyroid is Hashimoto’s and doctors routinely over look this. If your doctor does not understand Hashimoto’s, move on, and quickly.

    Why is it that Celiac Disease and Gluten Intolerance is widely known in the European medical community, but when you talk to your doctor about Celiac or gluten intolerance in the USA they look at you as though you have two heads? Could it be that the drug companies in America are benefiting too much from undiagnosed gluten issues?

    Thank you for giving us an opportunity to speak our mind. It has been a very frustrating journey because the medical community has been tremendously ignorant and downright arrogant about their ignorance. I welcome the medical community to speak up and tell us why they are so lacking when research abounds in this area.

    Angelique Matthews
    Denver, Colorado USA

  13. Anonymous says:

    I was diagnosed with celiac at the age of three, after being given a “failure to thrive” label, and 9 weeks to live. I looked like a white ethiopian baby, who is starving but has a huge stomach. Finally, a specialist at children’s hospital diagnosed the celiac, and I have lived with that diagnosis my whole life. My brother and dad have also been diagnosed with celiac, however my mom has not been tested. Prior to having me, she had a few miscarriages, and after having me, she continued to have miscarriages and had a still birth (the dr said that was due to a microscopic tear in the uterus or something) before having my brother, who was born a premie, and had his own medical issues. She still suffers migraines, and alot of other pain, but her doctor has yet to test for celiac, even though the rest of the family has it…..

Trackbacks

  1. [...] This post was mentioned on Twitter by Jasmine Jafferali, Heidi Kelly. Heidi Kelly said: New Blog Post Celiac Disease and Fertility/Reproductive Health Issues http://goo.gl/fb/xiSI7 [...]

  2. [...] the ball and ran with it, addressing those issues as well as many symptoms considered atypical. Read her article with numerous sources cited and watch the two videos that she included—one of Alice Bast, the [...]

  3. [...] studies showing that it is common. (Heidi at Adventures of a Gluten Free Mom recently posted about this very topic. While you’re there, be sure to watch the video of Alice Bast from the National Foundation [...]

  4. [...] and was placed on semi-bed rest for the duration of my pregnancy.  Knowing what I now know about celiac disease and fertility problems, I am very lucky that Sam is alive [...]

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