The years since her diagnosis sort of start to blur together after some time. I was also pregnant at the time, which didn’t help me deal with anything. Let’s just say that although I loved being pregnant and had two uneventful pregnancies, being pregnant just doesn’t agree with my digestive system, if you get my meaning.

I started baking my own GF bread some time between the end of ’06 and baby girl’s birth. Once I gave birth, I had so many things to think about daily that I just “survived” day to day by making sure she had the basics to eat well and not get “glutened” and tried to make some home made bread every so often in our dedicated bread machine.

Then when baby sister, started eating solids… well, yeah, there were many more issues that started cropping up. We actually kept whole wheat bread and pastas and other things in the house for a long time. At least until the littlest one was old enough to undergo testing herself. She also seemed to have symptoms akin to Celiacs (reflux, whining, weird growth patterns), but I was also prone to come to that conclusion easily. Then again, I didn’t KNOW what was “normal” for that age since, as per the specialist, big sister had started showing signs of decreased growth around 9 months of age. Basically, at that age her system was already very compromised since we could SEE she started dropping off her growth curve. It takes time for that kind of internal damage to make such a symptom appear.

In any case, after 2 negative blood tests on baby sister and being SO over cleaning the floor 5 times a day from bread crumbs, thrown gluten pasta and more, I decided to ban gluten entirely. Afterward we ALL started eating my home baked bread as the store bought kind was, well, not that tasty really. This pushed me to start reworking the recipe over and over until it started tasting satisfactory to my gluten loving taste buds. My daughter on the other hand, loved the store bread just fine, she didn’t know any better. But after some time, she came to like mine better, although not every batch is as good. Even baby sister eventually accepted the new bread instead of the whole wheat kind she had been chewing on since she started eating bread.

It took about 3 months, but we did it. There is very little left in this household that has gluten. My husband’s beer (which I think is safe to assume isn’t an issue yet ), some popcorn that I can’t confirm is gluten free and my husband’s luncheon meats, which, let’s face it, with him eating 5 sandwiches a week is just not worth buying GF unless we want him to eat us out of house and home.

That is, a gluten free home until this past January. But more on that next time.

Once all the excitement of the hospital stay, the biopsy and those first few outings to find all these specialty foods were over, what now? We had a meeting with the hospital dietitian the week following her biopsy and she gave us the lo-down on the diet and the hidden sources of gluten. Alright. Cool. But now what?

We bought things left and right to replace staples she liked, Rice Krispies, Corn Puffs, oatmeal, all things she couldn’t have anymore. We found nice alternatives and she took to them without flinching. She really enjoyed every bite and started asking for seconds and thirds! My little girl that barely ate had finally found her appetite again. Come her 2 year birthday, she looked positively glowing and plump and had gained about 5 pounds in a few short months, going from her mini 23.5lbs (yes, at 21 months!) to somewhere around 28.5 lbs on her 2nd birthday. A clear case of “the proof is in the pudding” if I ever saw one.

By that time I made all the minimal efforts I needed to do. Bought what she needed only, none for us and made sure everything was kept separate and that we washed are hands and mouths thoroughly before handling her food, utensils and even her. We probably looked like complete basket cases when we visited other people. But, it worked, her follow-up tests came back clear, we were doing it right, she was growing both physically and mentally.

I mention this as well because she had sort of been “stuck” in her devellopment where she wasn’t learning things she out to. She had still a limited vocabulary, didn’t talk much and was just plain shy. You should meat her today, she’s still shy, but only to a point In the weeks and months after her change in diet, she became this spunky energetic 2 year old that simply blossomed more every day. She started learning more words, stringing them together, running constantly and best of all, I suddenly couldn’t keep up with her anymore. Yes. A good thing. The best thing.

Indeed. We got the “official” results the week following her biopsy. Although the surgeons that had made the actual procedure hadn’t “noticed” anything during the process itself, the analysis proved beyond a doubt that she had Celiacs. The “vili” in her intestines were COMPLETELY flattened out. Which explained the foul smell of her stool and the fact that, well, they were a nice “computer gray”… yeah, not so normal, ya think?

By the time the results came in, we had already started her GF diet, scouring the local stores and the internet for anything that was worth trying. I found a WEALTH of information and stores, but nothing like what I’ve been finding the past year. But we’ll get to that in dedicated posts

Here’s picture of my daughter we had taken the weekend after her biopsy. You can’t see her belly, thankfully, that was the point of the dress, but you can see how thin her face and arms are. I have many more that show her belly with prominence and I might find a spot to add them at some point.

We had a visit with the hospital’s dietician the following week and she gave us a BIG pile of papers with tons of information as well as helped fill out the government aid form she gave us. I was still quite a bit overwhelmed, but was pushing through it all. I had to. My daughter on the other hand was oblivious to all of it, I think she simply apreciated the new cereal better and started anticipating meal times with a smile more and more.

Last day of July. We came back to see the Doc after giving her laxatives for a month, with little change. She’d had her ultrasound showing that she was, well, literally “full of shit” as per the technician (said while trying to keep a straight face and lighten up the mood) but we still hadn’t heard about the blood tests (which I now realize took WAY too long to process…).

We went into the Doc’s office and she asked questions about the laxatives, reviewed her U/S and checked the fax machine, which had return half of her results. She was borderline anemic and was low on B12. After I reminded her of my daughter’s lack of growth and weight gain, again, she remeasured and weighed her herself and put the results on her growth chart. When she saw the results compared to her last well check-up, she practically JUMPED out of her chair to find the clinic’s pediatrician. In the end, she gave us a referral to come back and see the ped a couple days later when she’d be in.

Back we came to see the pediatrician, and would you believe it, still no results. They said they’d fax the hospital so they could forward them pronto.  And we waited. We first got her mineral and vitamin results, which showed she was borderline anemic and deficient in Vitamin B-12. Now, without trying to worry me, the Pediatrician started looking up diseases that could account for these deficiencies. Finally, the specific gluten antibody test came back. VERY POSITIVE…. And the Ped was actually relieved. Why? Because her next tests would have been for Cystic Fibrosis. Glass half full please. This wasn’t such a bad deal between the two, or so she said.

But how was I supposed to be happy about this? My baby actually had something “wrong” with her. Her tests showed she had an antibody count of upwards of 70 units. A normal count is somewhere between 2 and 4 units. Um, yeah, no question, she’s Celiac. She reviewed her growth chart (and the one I brought that I did at home). The next step was getting a referral to the gastroenterologist. Faxes we’re faxed and we should have a phone call from the hospital very soon. I had to keep her on a wheat based diet until she underwent a GI endoscopy to get a positive diagnosis… So I basically had to poison my daughter for still longer. Now you might start understanding why there’s a “feelings” category.

It had already been a LONG month of July, me with my morning sickness and overall nausea, her smelly poops and crankiness and to add to her list of symptoms, she started refusing bread, pasta, basically anything with wheat in it. Could it be that my baby was listening to her body’s negative reactions to all this “poisonous” food? And I had to keep shoveling it in so we’d get that positive biopsy result who knew when.

Through some trials and tribulations, a stupid mistake on my part at one point, help from the nurses and amazing timing (in the form of a cancellation) we got her in to see the Specialist the next day! Upon seeing her he was already positive of her diagnosis, if that tells you anything! He looked through her blood tests, made some muscle tone “tests” (which at this point she had barely any at all) and then showed me a photograph taken in the mid 1950′s or something of a “text book” case of Celiacs … Aside from it being a boy, she looked IDENTICAL to him. The specialist said he hadn’t seen such a textbook case in a long time. He approved the Upper GI endoscopy and I had to get back home and call up to get a date set-up for the procedure.

Now, being that she was a young child, she’d need to be put under full anesthesiology. Problem was, the anesthesiologists schedule was full until November! WHAT?! I had to keep feeding my child food that was in effect slowly killing her for another 3 months? I was breaking down. Not 10 minutes home from our appointment and I found that we already had a message on our voice mail. It was from the specialist’s nurse calling because someone had canceled their procedure appt and we can stick my daughter in that slot!! AWESOME! Add to that, the G-E had told me we could start her Gluten-Free diet the day after her biopsy as he had no doubts that this is what she had.

In the end, the biopsy is simply the only approved diagnosis tool for the government. If you want financial aid (for children) from them, they need this “proof” that they have this disease. Celiacs is considered a “food handicap” by the Quebec’s Government. Since GF foods are easily twice as expensive (and that’s when the normal food isn’t on special, like 33cent pasta!) it’s something that is really worth going through, but ONLY if your child isn’ton a GF diet already. Believe me, going on a “gluten intoxication” diet to prove someone right is just not worth it. But more on that later.

By this time, it was obvious to me that something was just not adding up. On top of being ubber cranky, she just didn’t seem to have the energy to do things other’s her age were doing, like running, walking to the park and running around there. But she still ate a fair amount, LOVED pasta, which she must have eaten about 5 times a week either for lunch or supper.

The only other problems I was seeing was that she still wore size 12 months pants (for height) UNDER her belly, which at this point was really big, to me.  Since she DID have this huge stomach, she had to wear size 24 mo shirts to fit over it at times! They sort of just hung on her shoulders but were sometimes still tight around her mid-section. She didn’t “look” overweight, so I didn’t understand why the shirts had to be so big. Actually, she looked rather “thin” but still had SOME muscle tone.

The other thing that started to bother her, and us, was being constipated for several days (sometimes up to 3 or 4 days), which was still considered normal if you can believe that, but it was also the SMELL! Ok, I know, poop smells, but this, wow, I couldn’t change the dirty diaper bag in the house for fear I would faint from the smell. I had to change it outside. Ick! (This was before I started dumping the solids in the toilet to be that much more environmentally sensitive).

Shortly before her 18 month well check-up, I posted a picture of my daughter on my Pumpkin’s chat forum and asked how they would described her belly (a photo I took of her in her bath with her arms in the air. She looked both like a third world malnourished child with skin and bones and a huge stomach but also so huge that looked like she was about to give birth herself! I was then 3 month pregnant with my second child). My Pumpkins told me they’d called that a “distended” stomach.

That word would come to be her saving grace. I Googled that with constipation and came out with 2 “Google” diagnosis, either “constipation” or “Celiacs”. Now WHAT the heck is Celiacs?? I printed out a couple pages and brought them to her well check-up. I showed them to her doctor and told her I wanted a certain blood test that would reveal if she had indeed Celiacs. My doc, a bit unbelieving that she’d have a mystery disease that *I* could have found myself, prescribed her some laxatives for the constipation, an abdominal ultrasound to see how stopped up she was and the blood tests I had requested. We rescheduled another check-up in a month to get the results of the tests and to see if the laxatives had any effect.

Let me tell you, they did not, not one bit.

Without my noticing it, it felt like having a one year old was just the most tiring job ever, but not from running after her. She still wasn’t running yet. What drained me was hearing her scream and cry for an hour when she should have been resting and napping and then having her whine almost constantly on “bad” days. Of course, at the time, I just attributed it to her frustrations with communicating. She was very good with basic sign language, but she still didn’t seem to know WHAT the heck she wanted or needed from me. So we just plodded along.

Now, the part I didn’t yet mention is I had been part of an online mom’s group since early in my pregnancy and was still very much in touch with all these wonderful women, hereinafter known as The Pumpkins. If you know even a little of what this kind of online group means, you’ll know that we shared a LOT. About everything! How tall or how much they weighed, how often and how long they slept, if they were walking, talking, anything!

So when some of them started saying their kids could reach to this or that, I started looking at my own child in disbelief. How could someone this age be tall enough to do this? Most of the Pumpkins are from the States and the kids usually have another well check-up at around 15 months, whereas, in Quebec at least, we have  a 12 and 18 month check-ups only. Therefore, when all my Pumpkins reported back with height, weights and percentiles, I decided to have our “own” weight and height check up right at home. I was decidedly thrown for a loop when I saw that she had barely grown or gained weight in the 2 month interval since her 1 year check-up (she had her 1 year at 13 months, long story). I shared this with my friends and how most of their children had had growth spurts and mine hadn’t. Well, turns out others in our group had “small” kids, so I just figured she’d fall into the smaller side of the spectrum. My side of the family might be 5′-7″ and up, but most of my husband’s female relatives are 5′-5″ and under. BUT, still, my Pumpkins were there to support and back me up and said to follow my gut if I felt I had to do “more”. I then decided to measure and weigh her every month, just to be “safe”.

Not knowing where to start, I thought it might be useful to start at her beginning really.

I had the most ordinary pregnancy you can imagine, from start to end, nothing of note. Couldn’t breastfeed past 10 days (not beating myself up, could it really have change anything? probably not) and then she had Nestle Good Start Formula until her first birthday or almost.

She was a very fussy infant, spit up a LOT but was also bright eyed and bushy tailed. So we just dealt with it. She was growing on track, gaining weight and height at each well check up. We started her on rice cereal at 4 month to the day (yeah, I was SO “by the book” back then, it’s not even funny, ask my mother!) and changed quickly to barley and to wheat cereals during that first month of eating “solids”.

According to what the “little” book: “From Tiny Tot to Toddler: Practical guide for parents from pregnancy to age two” published for the Quebec government said, she was right on track food wise, no worries. Of course, that was in the 2004 edition. My how fast things change from year to year. In any event, she progressed from cereals to vegetables, to meats and fruits all per what the guides and worksheets I got from the CLSC said. No issues. She ate with gusto and was not a food problem child at all (and she still isn’t in the general sense of the word).

Come her first birthday, she was healthy, if only slightly small-ish for her birth weight, but still nothing to worry about according to our family doctor. At this time, my mother wasn’t convinced that “all was right”. To her, my very shy & calm child seemed “off” somehow, but of course, I was a rascal at that age, so who knew. She couldn’t put a finger on it and I didn’t think of it twice. Why would I, everyone told me to not stress over it, she’s fine, healthy, active, starting to babble, already walking and interested in her environment. What was there to truly worry about? A few short naps instead of longer restful ones? Lots of whining? Both those are still normal things for the age. Adjusting from 2 naps to one isn’t a small feat and neither is trying to communicate without words.

So onwards we went.