Just Heather

Allow me to give you a few excerpts from my terrible, horrible, no good, very bad day.

  • Took my sick, crabby baby to the doctor. She either has the start of a sinus infection or will require regular medication for seasonal allergies. I never thought I’d say this, but I really hope my baby is sick.
  • Got a phone call from the principal today. Some psycho kid threw a chair at my daughter. Knowing my daughter, however, I’m sure it was provoked. The kid says she was “saying mean things on the bus” which is odd since she hasn’t ridden the bus for two days.
  • Sent said child to bed without dinner because she threw an all out kicking, screaming tantrum when we tried to talk to her about what may have led up to the Bobby Knight incident. She will not, however, be in trouble for yelling obscenities at the kid on the bus as I would have too if he tripped me every day.
  • Had to call up all knowledge of Heimlich for my baby who choked—real and actual choking—on the food her sister left out after lunch.
  • Caught my 4-year-old stealing candy that I refused to buy for her. This stealing thing has become a problem, though this is the first time it has been outside of our own home. I’m raising a klepto here and not really sure what to do about it. She seems pretty remorseful and I’m hopeful our conversations got through to her.
  • Had an interesting experience at the store when a coupon for $1.99 rang up for $1.00. The idiot cashier told me “that’s how it worked” and offered to “explain coupons” to me! Ha! I wanted to scream, “I’ve been on CBS, the front page of the Chicago Tribune and syndicated across the nation as a ‘coupon expert’ and you want to teach me how coupons work?!” Instead, I used my coupon at the back of the store while I paid for Lorelai’s prescription where the pharmacist had no problem getting it to work correctly. Then I came home and shot off an email to their corporate office about the moronic “manager” and how rudely I was treated.

Why does it seem that doctors are more interested in labeling symptoms than finding a proper diagnosis? I am finding this a lot in relation to celiac disease. So many people come to the gluten free lifestyle after years of being diagnosed as a variety of things that are really just symptoms of a disease that has a complete turnabout with a gluten free diet. Of course, the doctors and pharmacies don’t make any money if I simply eat right, do they?

Celiac Disease is listed as one of the top disease doctors miss because they are too busy labeling our symptoms. Constant tummy issues? Irritable Bowel Syndrome (syndrome, not a disease—there has to be a cause somewhere). Extreme fatigue—we’ll call that Chronic Fatigue Syndrome and not bother to find out why. Anemia—wouldn’t the iron deficiency be caused by something?

We are still working out Lorelai’s iron deficiency. She used to get her iron from formula (on occasion) and fortified breads & cereals. Now she is gluten free and can’t seem to handle meat either. No iron for her. The only things she can stomach that are slightly higher in iron are sweet potatoes and raisins—both of which she loves. They seem to be helping with her energy levels, but the diapers are not so pretty. I think we’ll have to start a baby vitamin.

At least we have an answer for Lorelai. So many people still don’t have answers for their issues, including many in my own family. Considering the genetic link for celiac disease I’m sure I know their answer, but they don’t seem to want it. They’d rather take a variety of medications or deal with stomach pains and other issues than live a healthy, happy life without bread.

After my youngest daughter’s diagnosis last year, I did a lot of research on celiac disease, naturally. I started noticing symptoms that we had taken to our pediatrician(s) numerous times over the course of 9 years, but no one had ever connected them.

It all seems rather disconnected, after all. I would never have guessed that joint pain (diagnosis: growing pains), skin disorders (diagnosis: eczema), behavioral issues (diagnosis: undiscovered after repeated visits with child psychologists, school counselors and doctors) and chronic nasal conditions (diagnosis: allergies, sinusitis, ear infections) were in any way related until I saw them all on one symptom list for the first time.

We made the decision in December to have the girls tested, but they balked at the idea of someone “taking out their blood.” Knowing that testing is unreliable in children anyway, we agreed to try a dietary challenge. The idea was that we would remove gluten from their diet, reintroducing it at 3 separate times over the course of 3 months. By day 5 of our first gluten free week, we were having the most peaceful days in recent memory. The first challenge was an utter failure—with the girls in pain less than an hour after their breakfast toast, in the bathroom all day and hyperactive off the charts by the next afternoon. As that last part could be chalked up to Christmas-mania, we were only looking to the gastrointestinal issues for results.

The end of the second gluten challenge a few weeks later had our oldest daughter begging, “Please don’t make me do the 3rd challenge.” The girls have now been completely gluten free for over 2 months. The few accidents we’ve encountered along the way have only served to prove how right the decision was. They now react to gluten with immediate, obvious, physical signs (especially Brenia)—flushed cheeks, hyperactivity, anger issues and complete exhaustion.

I decided the genes had to come from somewhere and decided to have myself tested. The problem is you are supposed to be eating the equivalent of 4 pieces of bread a day for 2-3 months for accurate readings and I have been pretty “gluten-lite” since Lorelai’s diagnosis. It only made sense to cook one family meal every night so my only source of gluten was lunch here and there. Of course, we all know I’m not patient enough for that so I had the blood test anyway. It came back midway in the normal range, which my doctor said given my recent diet was probably inconclusive. In lieu of additional testing, she suggested I go completely gluten free for 3 months.

I’m starting month two and have shown the same significant improvement as all three girls. I would never have referred to any of my “issues” as symptoms, but now that they are gone it has been life-changing. I have more energy than I can remember having in my life. I am more focused than ever—the house first floor (I’m getting there!) has been cleaner and more organized than ever before. The headaches I have had nearly daily since I was a child are few and far between. I lost 4 pounds in the first 4 days—presumably all water weight as I lost immediate inches. I never realized how bloated I was until it went away and came back again in a rush after a gluten mistake.

While I can’t say I’m truly glad to have a lifelong autoimmune disorder, I am so thrilled to have discovered it. I feel great, my house/life are (fairly) in order for the first time and I am enjoy my children more than ever before. Of course, the absence of their attitude and anger-management issues make that so much easier. All I know is, positive test or not, it’s the gluten-free life for me (and my kids)!

Long time, no see!

  • Anyone who could make it around the world in 80 days, clearly didn’t stop to visit family. Christmas alone took us 6.
  • Through a series of gluten free trials and challenges, it would appear that all 3 of our children are celiac. Updates to come when I have more time.
  • The chicken pox vaccine doesn’t work for shit.
  • Sick days plus holiday break makes for a very, very long 3 weeks.
  • The love of baths is clearly genetic. The wonders of an oatmeal bath have created yet another addict.
  • 9-year-olds do not know how to read in a tub without soaking the book.
  • I, however, have successfully read 5 books in the tub since Christmas.
  • Speaking of books, I once told my uncle that I would love to own James Whitcomb Riley books, but they are too expensive in our flea markets. Though I haven’t seen him for several years, I just received my 6th book in the mail from him this week. Also, though I don’t remember ever mentioning that I wanted to find Alice of Old Vincennes (my hometown), he sent an antique copy last month!
  • It’s Girl Scout cookie time! And my cookie mom will be out of town when the orders are due!
  • Also, the internets have suddenly decided that I don’t need to receive any email from said cookie mom.
  • Gluten free diet + sneaky child who loves to climb=very cranky, glutened child who doesn’t seem to understand cause & effect
  • Molars really hurt on the way in, poor baby!

I remove crumbs in a single swipe.
I stop cross contamination with the wipe of a sponge.
I decipher ingredient labels with my finely tuned eyes.
I am…
(dramatic pause)
Allergy Mom!

(Sort of.)

Lorelai’s allergy skin test was this morning and it was a good news/bad news kind of day. The good news is she tested negative for everything. The bad news is we still don’t know why she is reacting to certain foods. The doctor said she most likely has very sensitive skin, which explains the rash reaction to high acidic foods (like strawberries). She turned red with every skin prick, even the negative control, so the fair skin concept holds up well. The other dietary reactions she has experienced the doctor called food intolerance, though not a true allergy.

The good news with that is she will probably outgrow most of it, and we shouldn’t have to worry about anaphylaxis or anything severe. The bad news is it brings us back to the original celiac disease concern. The only way to confirm that diagnosis is with a biopsy, and she has to go back on wheat first. We’re declining that for now, but may consider a challenge when she’s 4 or 5. I see no reason to put something back in her diet that causes any sort of reaction, even if she isn’t officially allergic.

Right now we’re going with the theory that reaction trumps results. If she reacts to food, I don’t care what the test results say. The doctor recommended keeping her off wheat, corn, beef, and chicken. We’ve been avoiding dairy since she was 2 months old, but now that her stomach is healing from the wheat damage we may try reintroducing milk. It would be much cheaper and so much easier to have 1 type of milk in the fridge. I plan to try it after her pediactric appointment in a couple weeks.

Last week I ran across some coupons for a few of Lorelai’s gluten-free regulars. Today I was super excited to find her favorite cookies on sale. Combined with a coupon, they were almost like buying regular cookies! I’ve discovered that my favorite grocery store carries a large variety of gluten free products. It’s helping me balance the new, costly diet with my frugal (read:cheap) ways. These last couple months of buying specialty food for the baby is the first time in 10 years I have paid full price for groceries.

Today I also made her first dentist appointment. She’s younger than he normally sees, but with the chance of celiac disease still out there I’m not taking chances. The disease causes defects with tooth enamel, and our pediatric dentist agreed an early start with her dental care was warranted.

In 2 days, we spend the morning with a pediatric allergy and immunology specialist. We’re looking at a long day of skin testing, and some more blood draws. I’m hoping we’ll find the rest of the normal people food that’s poisoning our daughter. My mother calls me a neurotic hypochondriac, but she’s getting better on an elimination diet so it’s clearly working. So far we know wheat and dairy with almost certainty and suspect corn, chicken, beef, and strawberries.

It will be such a relief to have it over and know for sure what she can and can’t eat. Then we can put together a balanced diet (hopefully—protein is appearing to be a problem with high allergens like eggs and peanuts our only alternatives). We’ll finally be able to make she gets the nutrition she needs.

If you have ever seen me eat, you would be hard pressed to picture me shopping in an organics food store. The recent discovery of my littlest one’s wheat intolerance has found me there quite regularly. I’ve been buying gluten-free toddler puffs and cereal to replace the Gerber puffs and Cheerios she was previously eating. It’s slightly more expensive, but mostly just annoying having to add 1 more store to my weekly errands.

Yesterday I found a new Gerber food that she can eat! I can’t begin to tell you how excited I was to discover the new Mini Fruits freeze-dried foods where just that—freeze-dried fruit with no additives. As long as we steer clear of the poisonberry flavor, we’ll be okay. I can add yet another mainstream food to the short list of Lorelai-safe treats. Plus, I had a coupon! And we all know how I feel about that.

I’m putting together a list for family in case they want her to actually be able to eat her first Halloween goodies as they will need to be both wheat-free and dairy-free. It started out pretty short—banana chips and fruit cups were all I could come up with—but it’s growing by leaps and bounds as I have researched brand names and ingredients.

  • banana chips
  • fruit cups
  • Fritos or Ruffles chips (She should be able to bite into these soon!)
  • potato sticks
  • Gerber mini fruits
  • Newman’s Own organic dark chocolate bars (Actually, a lot of candy is gluten free, but most chocolate is made with milk and most other candy is too hard for little ones.)
  • apple cinnamon rice cakes

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.