Because recognizing and diagnosing Celiac disease can be much like the wild and seemingly endless quest to Finding Nemo, this post is titled after the very popular Pixar film. Similarly, the beginning scenes of this post are a little unsettling, leading into a dangerous but comical adventure with beautiful and fulfilling results.
Inspired by questioning, I will share our family diagnosis story here. For privacy reasons, I will not be using my family's real names.
Our story begins with Lane, our first daughter, who was a 'text book' baby, meaning that she had a perfectly normal and uneventful fetal experience and delivery, and was developing right on track. Until 18 months of age when she began vomiting every time she ate wheat. That seemed simple enough, she must be just like me, allergic to wheat. So I took her
off wheat (not gluten). While she stopped vomiting, the problems moved south. By age 3 she was having severe, uncontrollable
diarrhea (she was potty trained but began having explosive accidents). As sad as it was to see her tummy ache, the blood in her stool was my biggest concern. Still, my first instinct was food allergies so I took her to a pediatric allergist in Dallas, who, after listening to her symptoms, very precisely and arrogantly refused to test her for food allergies and referred me to a pediatric GI down the hall. Being young and new to mothering in general, as well as sleep deprived (because I also had a 6 month old at the time) I didn't question his blatancy and just followed his recommendation.
I took Lane to the Pediatric GI who insisted on a colonoscopy before speculation as to what could be causing this inexplicable diarrhea. After a very traumatic procedure (which details will remain untold) the doctor diagnosed her with
ulcerative colitis, prescribed an arm load of steroids and other drugs, told me that she would have colon cancer by age 25, and dismissed us. Refusing to put her on all those drugs I
took her to my holistic nutritionist who had helped me with all my food
allergies. She informed me that colitis just means inflammation of the colon
and that I needed to figure out what was
causing the inflammation, and
that no matter what, Lane would benefit from a gluten free diet because gluten is hard the gut. Immediately, Lane was put on a gluten free diet and her symptoms improved to a
tolerable amount of infrequent tummy aches. Unfortunately, her symptoms worsened again when she was 5 years old. After keeping a detailed food diary for her, I was sure it was food allergies and I proceeded to take her to a local (Flower Mound) allergist to have her tested. The results were conclusive, she was allergic to corn. Of all things, CORN! I poured over the Internet, researching everything corn tainted and wearily wrote down the handful of things that did NOT have the allergen in them because it was simpler than trying to compile a list of the thousands of products that DID have corn. Lane was now gluten free and corn free and eating a lot of rice and salad, and still having the occasional bout with diarrhea.
Just after adjusting to our new corn free diet, we began having problems with our middle daughter, Drew, who was 3, and another 'text book' baby. Drew suddenly began breaking out in hives every time she ate....anything. I promptly called up our friendly local allergist and took her in, only to discover that she has no food allergies. None. What was I to do now? I fed her Benedryl with every meal. Let me note here that I am not paranoid, there were two factors that led me to use small amounts of benedryl with Drew, 1) I myself have had anaphylactic reactions from allergies and they are very serious, 2) I am well versed in the quick progression of food allergies, and know that what starts out as a rash upon one encounter can turn to blocked airways upon the third. I vowed to be cautious until I got answers, which was in the very near future fortunately.
Dumbfounded, I took her to our family doctor who is a nice cross between a homeopath and a mainstream
medical physician. She was open minded enough to do a blood test to look
for IgA antibodies to gluten on Drew. Sure enough, she had them. That
was the first indication of celiac in our family, aside from Lane's undiagnosed aversion to all things wheat. I had read about Celiac, and the diagnosis process, and I was leery of what was to come next. Typically, the Celiac diagnosis process follows this standard: blood work, colonoscopy, gluten free diet, follow up colonoscopy, diagnosis. I was not interested in traumatizing another one of my children and fortunately, neither was our family doctor. She recommended we put Drew on a GF diet and follow up with her in a month. In the mean time, she suggested that we all get tested for IgA because celiac is genetic and everyone in our family is at risk.
Lane had been GF
for too long for the blood test to be accurate, so we tried putting her back on gluten before the blood test, but it made her so
incredibly sick to her stomach after one encounter that we couldn't go
through with it. Lane still does not have a firm diagnosis, all we know
is that she cannot, in any way, tolerate gluten.
The rest of us
were all regular wheat eaters and got blood tested. Much to my surprise, I was
not the carrier. I have several food allergies, including wheat which
led me to believe I would be the one with Celiac disease, but much to our surprise, it was my husband, Alan.
I'll digress here and tell you a little about
his history. Alan's problems started when he was about 3 also. His mother, an enlightened RN at the time, took him to the doctor for stomach problems
and diarrhea and demanded he be tested for celiac (imagine back then,
they probably didn't even know what it was!) Alan's test, if they even did
it correctly, was negative. So they went the dairy free - it must be
lactose - direction and he grew up with continued bowel problems,
thinking he was lactose intolerant. **SIDE NOTE- damage caused by
undiagnosed celiac disease often causes lactose intolerance.** When I
met him, he was 23 and very thin, like the malnourished product of a third world country, with
the distended belly and all. He was also a picky eater. Alan never ate
pasta, pizza, or anything with bread on it. He would order a sandwich
and then take the bread off and just eat the meat. I thought it was very
strange, he always said he just didn't like breads and things of that nature. As in many cases, his instincts were protecting him. He went gluten free when he
found out he had celiac and has never felt better. He has since filled
out and doesn't have the stomach problems that he has always had in the
past.
My third daughter Avery, also tested positive for gluten antibodies.
Meaning she did have or was going to have full blown celiac. At the
time of her diagnosis, she was 16 months old and we thought she was asymptomatic, she didn't seem to have any food related issues. So we thought. After her test results, she too went gluten free, and the Angels descended from the Heavens and blessed us with peace. Avery slept through the
night. Something she had never done until now, at 16 months of age. She was a colicky baby and never slept more than
an hour at a time, even at night, but I never attributed that to
GLUTEN. Until she became a 'normal' baby almost overnight after she went gluten free. Needless to say, she, too, will be GF forever.
As I learned more and more about the gluten free diet and glutinous foods, I discovered that I had inadvertently be feeding Lane a few things that I shouldn't have. Like Oats. There is a huge learning curve with the celiac disease, the gluten free diet is very complex and hard to implement. Prepare yourself for this and be patient.
What should you do if you suspect gluten is an issue?
1) Start by keeping a food diary. Write down what you eat, when you eat it, and how you feel later. After a few weeks you should be able to go back and see a pattern.
2) Try a GF diet for a month and see if your problems go away.
There are flaws with this option, of course. First, a gf diet is tricky and it
would be hard for you to make sure you are completely GF. Second, once you've been gf
for a while (long enough to notice improvement) you cannot be tested for
celiac unless you ingest gluten regularly for about a month or so. Which sounds easy, but you must know that the
longer you've been off of gluten, the sicker you'll get when/if you go back
on it.
3) See a holistic doctor, a nutritionist, or a GI
that specializes in Celiac, and ask for the IgA blood test for celiac.
That is the first in a series of steps to getting (or ruling out) a
diagnosis. Note, that if you go to a GI, they are going to require a
colonoscopy for diagnosis.
4) Get allergy tested, even if you've been tested before, food allergies can develop at any time just
like seasonal allergies.
As always, I hope that this information helps you. Please share it with others who may be suffering from undiagnosed celiac disease. The wide range of symptoms is too long to list here, but is available at
Celiac.com and several other places. 1 in 90 people have Celiac disease today, and if ignored, it can lead to severe and irreversible health problems.
If you remember the opening to this post, you are probably wondering where the beauty and fulfillment is in all of this. Let me tell you. The fulfillment is in the answers. Knowing there is something wrong, but not knowing what can be frightening, even for the strongest faith. The beauty is in the divine complexity of our bodies. We have been empowered with the responsibility of maintaining these intricate 'machines,' and this story reminds us to listen to them.
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