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After college, I married and had two wonderful boys.  I tried to have a third child but just couldn’t get pregnant. I decided not to try fertility treatments. 

Four years after trying for that third baby, I found out I was pregnant.  Joy surrounded the birth of my daughter.  Nine months after my daughter was born, my body had other things in mind.  I had an episode of violent abdominal pain, vomiting, and diarrhea. It was the most awful thing I had experienced – thinking it was food poisoning. For the next eight months I had at least one episode per month. 

The second time it happened I knew it was not food poisoning.

I started seeing doctors and specialists. During this process I had multiple blood tests, stool samples, barium swallow test and other tests. I finally asked my endocrinologist to test me for celiac disease (I was diagnosed with hypothyroidism in college – so I already had one autoimmune disorder). He said that celiac was rare but that he would test me since it was a blood test. 

The tests returned a positive result for celiac and I was immediately sent to see a gastroenterologist.  During an abdominal CT scan a strange thing showed up - my appendix was greatly enlarged. Within a month’s time, I had my appendix removed, a colonoscopy and a small bowel biopsy, which then confirmed my diagnosis of celiac disease.

I don’t really know if my monthly episodes were related to the celiac or chronic appendicitis but after my appendectomy and gluten-free diet, I never had another episode like that. I had another small bowel biopsy three months after starting a gluten free diet and the test was normal which showed the gluten free diet was working to heal my intestines.

I now know that infertility can be related to undiagnosed or untreated celiac disease.

Mommy doesn’t feel well

I just didn’t feel well much of my early mom years.  I had head aches, body aches, was always tired, and had a general sense of feeling bad. I can’t really explain it. There was nothing specific.

When my second son was in pre-kindergarten, he wrote in a book that his mommy always took her medicine. I’m sure I was always taking some sort of pain medicine. That made me sad then and makes me sad when I reflect back on it.  Maybe I could have changed that had I known more about celiac disease.

That was six years ago.

Initially, I thought I would “try” the gluten free diet.  But I felt so much better almost immediately, I have never returned to eating it.  There have been a few times I have accidentally ingested gluten at a restaurant and have thrown up. 

I still have issues with maintaining proper levels of Vitamin D and B12 (apparently typical with celiac) and my thyroid levels fluctuate frequently but I monitor those well. I have no idea how long I had celiac disease before diagnosis because the symptoms are so varied and often nonspecific.

But I do know that no doctor recommended I be tested.  Which makes me even more thankful that I knew a little about it to request testing.

It’s a family affair

I have celiac disease and so do two of my children but it does not define who we are. Our story will not be different from many of you. Sometime in my teenage years my mother was diagnosed with dermatitis herpetiformis, which is a skin manifestation of celiac disease. If you have DH then you have celiac disease. She tried to eat a gluten free diet some of the time but much of the food available was terrible. She did not remain on a gluten free diet and now has arthritis, osteoporosis, and constant pain.

My second son was always tired.  He didn’t want to play outside much, had a short stature (5^th percentile), and a big belly. His belly showed a very different body type than my oldest son. I thought it interesting. Even before my celiac diagnosis, we started investigating what might be wrong with him.  Many tests later, no diagnosis.  Because he didn’t have obvious gastrointestinal symptoms nobody thought to test him for celiac. 

Several months after my diagnosis, I asked his pediatrician to test him for celiac.  But she refused because she said I wouldn’t “want” him to have that lifelong diagnosis.

Can you imagine?! I laugh at that statement now. I switched pediatricians.  My new pediatrician said he didn’t think my son would have celiac but that he would test him because of my diagnosis. A few days later he called and to his surprise the testing showed he had celiac (with very high blood counts) and was anemic also. We saw a pediatric gastroenterologist and he reconfirmed the blood work. (Even though a biopsy is the gold standard for diagnosis I decided not to do that for him at age 8 because I was already confirmed and his numbers were off the chart!)

I cried when he was diagnosed – partly out of relief, partly out of sorrow. I knew it would be difficult for a child but fortunately I was already eating gluten free and it was an easy transition for him. He has been gluten free for five years now.

When my son was diagnosed I had my other two children tested for the gene and for celiac. Because there is a genetic component and the variety of symptoms and severity I knew it was important to test the others. They both had the gene for celiac but both tested negative at the ages of 10 and 2.

But within a year my daughter started complaining about stomachaches all the time. We received another celiac diagnosis with anemia at the age of 3 – remember she was negative less than a year before. 

It is important to know if your child (or other family members) has the gene so you can retest regularly or should any symptoms appear. My son and daughter have both done great on the gluten free diet. My daughter is extremely sensitive and cautious. Within an hour of eating something – accidentally because she doesn’t get it at home – she will violently throw up. It lasts a short while and then she will be exhausted. She does great knowing if she can eat something and she just won’t eat if she isn’t sure. She seems very content with her gluten free diet.

My daughter laughs now when I tell her things she used to eat like regular donuts.  She thinks those gluten foods are so awful now and she can’t believe that she ever liked or ate those things. My son is now in the 75^th percentile in height (he was in the 5^th percentile before diagnosis).  My oldest son sometimes has GI symptoms but still tests negative for celiac.

My children’s school provides gluten free meals for them and many of their friends now understand and think of alternatives for them at birthday parties and sleepovers.

When I was diagnosed I wish I had known to test my children. My son could have felt better sooner. We have many favorite foods and so many restaurants are able to offer gluten free foods. We still have to plan ahead but our lives are much better for having proper diagnosis.

While we usually explain celiac disease as a food allergy, it really is much more than that. Celiac is a malabsorption autoimmune disease. It is necessary to eat a gluten free diet all the time. There are so many food options out there and you can find your favorite things. Eating gluten free is easier than you think. We love to eat in our family and I am so thankful for this because food can still be a happy social occasion for all of us – and for you too!

Eat well and be healthy!

What I know now: 
-       I should’ve tested my children for the gene and active celiac as soon as I learned I was diagnosed
-       I needed to continue monitoring some vitamin deficiencies
-        The symptoms for celiac are so varied and that gastrointestinal symptoms are not the only signs
-       I know how that celiac is an autoimmune disorder and that once you have one autoimmune disorder that you are more likely to have another
 
I  recommend:
-       Maintaining a gluten-free diet for life once diagnosed with celiac
-       Understanding that many complications can result from not maintaining gluten free diet
-       Testing all family members for the celiac gene and active celiac and then continue testing on a regular basis if they have the gene for celiac
-       Monitoring literature to understand more about celiac and future hope for cure/prevention
-       Talking with others about celiac so you don’t feel alone
-       Always talking with restaurants about your needs. 

Lori H. is the mother of three children and lives in Atlanta. 

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