Just Heather

Today was Lorelai’s 3rd full gluten free day. It came with improved health, more energy, and excellent news from her doctor. Her lab results came back today and doc reports she is not celiac. Because she has shown improvements on gluten free, we—which includes her doctor—are keeping her gluten free for at least the next couple months.

At her 1-year checkup, she’ll be weighed, measured, poked and prodded. He’ll then refer her to an allergist who will poke and prod some more to determine what [other] foods cause allergy symptoms. For now we’re thinking dairy and wheat, but it could boil down to something more specific or completely different under further testing.

I’m happy that it is not the lifelong disease that is celiac, but I don’t like not knowing what is causing her problems. It’s become obvious over the last few days that going gluten free is beneficial to her, so I suppose it doesn’t really matter what the official cause is. At least now there is still the slightest chance that whatever it is could be something she’ll outgrow.

Today was Lorelai’s second day on her new gluten free diet. I don’t know if it is my wishful thinking or discernible results, but I actually think I’m seeing improvement.

Her naps were much less erratic today than they ever have been. Normally, she takes 3-4 naps of around 1-1.5 hour each. Today she took 2 good naps, totaling about 3.5 hours. Plus, hubby reports that she wasn’t overly tired at bedtime, though she did go right to sleep.

Her diapers have never been a real issue, which is why the celiac disease discussion was set aside at first. However, it has always been incredibly obvious when she was filling a diaper. That crap takes a lot of work! Today, she was dirty twice and we didn’t even notice until she suddenly smelled bad.

The last notable change could be an utter coincidence. Her development is not too off, but she is on the tail end of most milestones. However, there is no way to tell when she would have pulled to standing on her own anyway, though there is the chance that she was able to stand in her crib today because she has more energy than usual.

Still no word on her labs, but I’m encouraged by the progress we’re alredy seeing.

In our infinite patience, we have decided to exclude gluten from Lorelai’s diet even before the the test results are back. In all my panic-driven research, I have realized she has numerous symptoms of celiac disease, though the only common symptom is her weight problem. I also discovered that breastfed babies present with atypical symptoms because the antibodies in mama’s milk protect the infant from serious gastrointestinal infections.

Whether she is diagnosed as celiac or not, it seems a gluten free diet may relieve some, if not all, of her symptoms. Non-celiac gluten allergies and sensitivities present with many of the same problems. Our thinking is that a gluten free diet won’t hurt, but there are many indications that it might help. We plan to keep her gluten free until her 1-year checkup even if the test is negative. We can track her progress and weight over the next 3 months to determine if a gluten free lifestyle would be beneficial.

I made my first visit to Wild Oats Marketplace this afternoon to pick up some cereal and finger foods to replace the potentially-poisonous Cheerios and Gerber Puffs. I was rather pleased with both the selection and the prevalence of gluten-free shelf tags. It made the entire foray into organic shopping quite easy. I also wandered the aisles to see what else was available in case the gluten-free, dairy-free diet becomes long term.

Did you know she can still eat pizza? I can’t imagine that soy-cheese, rice-crust pizza would actually taste that good, but to a child who has never known the difference I suppose pizza is pizza. She seemed to like the organic Teddy Puffs I found for her, which taste remarkably like Cheerios even though they are made from rice and corn instead. I also purchased Gorilla Munch cereal and (gluten-free) arrowroot cookies, a staple among older babies and toddlers.

I’m keeping my fingers crossed for a phone call tomorrow. Even though I have a plan and am feeling a bit more empowered by newfound knowledge of the disease, I will be on pins and needles until I know for sure.

For some reason I can’t seem to put into words the most difficult things in my life. Others share their struggles so eloquently, but I tend ignore my greatest challenges here.

For the last 5 months we have been dealing with the dreaded “failure to thrive” notation at Lorelai’s checkups. She dropped weight percentiles at her 4 month checkup, but no one was overly concerned because sometimes a baby’s weight will dip now and then. At her 6 month checkup, it dipped yet again. We then began monthly weight checks. At 8 months she moved up to the 10th percentile and it looked like things were moving along.

Between 8 and 9 months, she lost 2 ounces. That may not sound like much to you and me, but to an infant who is supposed to gain 8-12 ounces per month, that’s a lot of weight loss. So two weeks ago I took my littlest baby girl to the hospital and allowed them to do this:

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The results of her CBC and MP came back normal so doc wanted to play the wait and see game. Because I’m not interested in “wait and see” where my children’s health is concerned (but mostly because I’m incredibly impatient), I made an appointment to discuss the issue and also told them about some rash problems she has had. She broke out in hives after eating an orange (though it was juicy and could have been a skin sensitivity issue due to the mess on her face) and after her sisters ate strawberries.

We went back to the hospital this afternoon so they could take more blood and run a series of tests to detect celiac disease. If that is positive, we get the joy of a consultation with a GI and a lifelong adherence to a gluten-free diet. If it is negative, we move on to a consultation with an allergist and the infamous prick tests to determine what is causing all the allergy symptoms.

Most signs do, indeed, point to celiac disease though the symptoms are fairly generic and could fall into many other categories. I’m keeping my fingers crossed it is something else. While I think I could handle quite easily a few specific allergies, celiac disease is a whole different ball game. CD is not an allergy—it is an autoimmune disease triggered by gluten. And while the disease can be onset at any age, it is not something she’ll outgrow.

I’ve been keeping my fingers crossed that her lactose intolerance was an infant thing that she’d outgrow quickly. If we get the CD diagnosis, it’s likely that the lactose intolerance will stick too as they sometimes go hand in hand. We’re talking a lifelong gluten-free, dairy-free diet.

We should have the CD results within a week, hopefully by Monday. I’m a natural worrier though, so it should be a fun several days.