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)!

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.