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)
Diagnosis of Celiac Disease in Pregnancy and Puerperium PMID: 11942914
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
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’s “Ask 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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