"C" is for Celiac

Our dear sweet Abby has experienced months of GI issues. We have finally found the "culprit": Celiac Disease.

Celiac Disease is an autoimmune disorder. It is a permanent sensitivity to gluten (gluten is found in wheat, oats, barley and rye). Unlike an allergy, you cannot outgrow it.

Up until the end of last summer, Abby had no symptoms. She was growing well and we never noticed a reaction to any foods we introduced. She had her first solid foods at five and a half months of age. I made her Super Porridge from whole grains like brown rice and millet from the Super Baby Foods book by Ruth Yaron. Her baby food was all homemade organic fruits, veggies, beans and meat, with the exception of store-bought jarred organic prunes. We did not notice any reactions to any of the foods. Her growth always hovered around the 70% for height and 20% for weight.

Sometime in late summer 2009, when Abby was at least 2 1/2, her bowels became loose. At first, we dismissed it as a little virus. We were not concerned because she was otherwise healthy. When it continued to persist, we took her to the pediatrician. He weighed her and examined her. She appeared healthy and growing normally. He was unconcerned. I called when we continued to see no improvement and he suggested taking her off dairy and any supplements (she took fish oil and probiotics). We tried that for a month, but I was not satisfied.

We took Abby to a chiropractor who does food sensitivity testing. She suggested that Abby is sensitive to dairy, egg yolks and fish (including fish oil). So we continued to keep her off dairy and fish oil, stopped feeding her egg yolks, and gave her a rice protein vitamin shake (as we were concerned about her calcium intake since she wasn't consuming dairy), probiotics and flax oil. We did this for a month and felt there was some improvement; however, she continued to have GI issues.

I called her pediatrician's office again. I requested that Abby be tested. The nurse asked if we wanted to schedule an appointment. I said "no" as I knew he would just weigh her and tell me what I already knew: she was not losing weight. I was concerned that she was not absorbing the nutrients from her food as I often could see whole food pieces that she never digested. We also could see that she was distended. I called again a few days later, spoke to another nurse, who was more sympathetic and who was able to get the doctor to write the order for bloodwork (CBC and celiac panel among others) and stool samples (to test for parasites).

A few days later, our pediatrician called with the results: it looks like she has celiac disease.

The good news was the CBC was fine. She was not anemic yet. Also she had not lost weight (May 2009: 26.5 lbs, December 2009: 29 lbs, March 2010: 29 lbs). He recommended us to see a GI specialist at Childrens.

I was frustrated at that time, because I felt that he had originally minimized my concerns and only tested her after I was persistent and pushed him to do so. I was frustrated because, in addition, he advised us to put her on a gluten-free diet right away. This advice was wrong. Luckily, my good friend has a background as a PA in a pediatric GI clinic and explained that we should not change her diet until she has an endoscopy, or it will affect the accuracy of the results.

Another friend responded to my Facebook inquiry for a recommendation on a peds GI specialist at Childrens. She recommended Dr. Josh Noe and was able to get us in sooner that the scheduling department at Childrens was booking (5 days vs 1 month).

The same night we learned the results of Abby's bloodwork, I had already ordered two books off Amazon. Luckily, they arrived in time for us to read most of them before our appointment with Dr. Noe.

We have learned that celiac disease is relatively common: 1-2% of the population have it. It is terribly underdiagnosed/misdiagnosed. According to many sources, about 97% of those who have it are unaware of it.

Dr. Noe strongly encouraged the endoscopy to confirm the blood test results. While the blood test results are 98-99% in terms of accuracy and specificity, the only confirmation of celiac is the biopsy of the small intestine. It is a 10 minute procedure and would require that she go under anesthesia....but because the impact of the celiac diagnosis is so great, requiring a lifelong change in diet, a definite diagnosis is highly recommended.

We are blessed that this disease is treatable with a change in diet. We are blessed that it was caught relatively early. We are blessed that we can afford the alternative food choices. We are blessed that we have access to so much information, resources and food choices/substitutes and that awareness of celiac disease is so much greater than in the past. We are blessed to have a store like Good Harvest Market nearby, with its great gluten free selection and labeling. We have the tools to heal Abby.

We are so especially blessed to have our little girl, Abby!!!

Five Month Old Lorelai

Weighing in at approximately 13.5 pounds, Lorelai hit the 5 month mark this past Sunday! She is a sweet, smiley baby.

Her siblings have a ball with her, as Lorelai is such an attentive and responsive audience for them. Ben loves to make Lorelai laugh... he tickles her, he makes faces, dances and sings for her...these efforts are often rewarded with Lorelai's smiles and giggles which continue to encourage him! Abby loves to hug and kiss Lorelai.

Lorelai is an easy napper (for her mother anyway). She will sleep about 2 hours in the am and 2-3 hours in the afternoon on the days I am home with her. Nighttime lately has been a different story. She will go to bed rather easily around 7:30 PM. The early part of the evenings is easy/smooth...then around 11 PM or so, when Mom is ready for bed, she often makes her first plea for attention. The night is a bit of a blur and morning usually finds Lorelai in bed next to Mom. We wake between 6 and 7 AM. At least Lorelai starts out in the crib...it is improvement over her carseat! She did sleep better in the carseat.

We have tried to put her to bed in her sleep sack, without being swaddled, several times so far. It has not been very successful yet. She still sleeps better swaddled.

She does not care much for the pacifier...Mommy is a better pacifier these days.

She gets a bath before bed every three days or so. She has a good time in the bathtub now, kicking with excitement as soon as she realizes she is in the water.

Lorelai is still exclusively breastfed or offered pumped milk. We will start her on solids at 6 months old. She feeds about every three hours during the day (on demand). When I am at work, she usually takes about 15 oz between three bottles.

Lorelai continues to roll from front to back. She still is not very interested in being on her tummy. She rolls to both sides and grabs her feet to stick in her mouth, but won't make the conscious choice to roll from back to tummy.

Her spit up is minimal, but the drool is constant! We change Lorelai's outfit 2-3 times a day, basically because Mommy is too lazy to put a bib on her. She loves to be held, sung to, and tickled. She puts everything in her mouth and reaches for Mom's food.

Lorelai had her first fever on March 1st (100.1), but fortunately, it lasted less than a day and did not require treatment. We are thankful that Lorelai has been blessed with good health these past five months.