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Roberta's Story

 
11/17/2008

Roberta's Story

I was always small for my age but so was my older sister (16 months older) and my parents were 5'7" and 5'4" so no one was particularly concerned. Even when I hadn't started periods until age 15 1/2 no one expressed concern. I was skinny so I always thought it was because I didn't have enough body fat (be careful what you wish for...!). Anyway, I remember being told I probably had irritable bowel syndrome in my twenties after numerous tests found no reason for my chronic diarrhea. I was average weight back then and newly married to my first husband whose favorite food in the whole world was take out pizza, so that's what we ate most of the time. I wasn't one of those people who lost a lot of weight so the consistency of my stools didn't bother me that much (enough to keep investigating what was wrong). I am a dietitian so at the time I knew celiac disease existed and that it required a gluten free diet but not much else.

When I remarried at age 39 my new husband and I very much wanted to start a family. I became pregnant about 2 months after we got married but lost the baby after less than a month. The doctor had no explanation but of course said something like "keep trying."

We did, and the next pregnancy was about 4 months later. This time I was between insurance companies, so I did what I knew I would be told to do (avoid any medications and alcohol, take prenatal vitamins, etc) and waited until my insurance was to kick in. Little did I know that I would miscarry my second child after about 7 weeks. This time it was extremely painful and happened about 3 in the morning at home. I was coherent enough to ask my husband for a container because I wanted the doctor to test the "products of conception" to see why this was happening to me.

Which he didn't...other than to say it was a "blighted ovum" and...to keep trying! By this time we were more than a little frustrated. My third pregnancy was about 7 months later and this time I went to the OB GYN's office excited and hoping to see the baby on the ultrasound with a beating heart. Unfortunately that didn't happen. He saw a "fetal pole" with no heartbeat and I had a D&C.

By this time we wanted to know what was wrong. My husband and I had our chromosomes tested and although he was normal with 46 XY, I had a mosaicsm of my X chromosomes (only some of them apparently) which meant that if the eggs carrying these chromosomes were fertilized it could be resulting in my miscarriages. However, at this point I was over 40 so that could have been a reason too.

We were devastated but felt that we still wanted to keep trying for a baby. I became pregnant 3 more times and each time after several weeks of spotting ended up with a miscarriage. We were not in a financial position to either adopt a baby or try expensive fertility treatments, so we basically decided "what happens, happens". If we were blessed with a child, great. If not, we would be ok.

Amazingly around Labor Day 1997 I had a positive pregnancy test and saw a baby with a beating heart at the doctor's office. It was a stressful 37 weeks (my son was born at 4# 13 oz at 37 weeks with apparent intrauterine growth retardation) because I was worrying the entire time, but in the end we had our miracle child. The doctor attributed the IUGR to my "advanced age" (don't you love that term when they're talking about 40 year olds??). How I wish I knew then what I know now. Which is...

I have celiac disease. I didn't suspect it until I attended a seminar of dietitians and heard a dietitian with the condition speak about the different symptoms and risk factors. I started thinking "Could that be me?" I decided that when I went home I would make an appointment with my family doctor, which I did. She was so unfamiliar with CD that she had to get out a book to see what lab tests she would have to order. The blood tests showed I did indeed have CD (sometimes I wish I could be wrong!). I was then referred to a GI doctor who did an endoscopy with a biopsy that confirmed the diagnosis. At the same time my older sister was complaining of GI symptoms and I recommended to her that she go to the University of Chicago's free screening for CD which was to be held that fall. She was skeptical but was tired of my nagging..so she made an appointment, and found out that she too has the condition (confirmed with a biopsy). We have a younger brother who has resisted getting tested up to now but I try to either scare him into it or nag him into it every chance I get.

Since my diagnosis I have become a crusader for more gluten free choices in restaurants and convenience food items and most importantly coverage for nutrition counseling by a registered dietitian for diagnosed celiacs. The gluten free diet is probably the most difficult to follow but in my case the nurse (who didn't know I was a dietitian) left the message about my positive diagnosis on my answering machine along with mentioning she would "put a copy of the diet in the mail". If I didn't have the resources available to get additional information I am sure I would have just given up and decided the diet was too difficult to follow. We need to fight for insurance coverage so anyone diagnosed in the future will hopefully be able to face the diagnosis armed with the knowledge they need.

You know the problem. Now be the solution.

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