So, You Have Celiac

A comparison of the history of Celiac symptoms/signs in our family.

History- Paternal Grandfather, passed away in 1998.  Was grain free since early childhood.  Attributed his inability (severe) to digest grains to the drinking of kerosene when he was two years old…  (I’ve always pondered how a 2 year old would actually swallow enough nasty kerosene to do that kind of damage to the stomach and bowel?). Death prior to widespread knowledge and testing for Celiac, believed to be the genetic connection. Grandpa was small in stature and very thin his whole life.

Polka Dot Mommy- Symptoms began in early childhood.  Small stature, failure to thrive, “sick” appearance, refusal to eat many foods, cravings for pasta/grains/breads, joint pain (especially behind the knees), bowel issues on both sides of the spectrum (never normal), frequent belly aches.  Frequent illness (strep, bronchitis) and asthma.  Developed PCOS, insulin resistance and infertility, labeled IBS. By 20, on hormone therapies, weight shifted to carrying an extra 20+ lbs throughout adult hood.  Belly/GI issues remain constant.  Frequent migraines.  Increase of seasonal, pet, and chemical allergies. Probable Celiac screen, negative Biopsy, development of Dermatitis Herpetiformis about 6 months post biopsy (recurrent rash lasted ~ 9 months before cleared with Dapsone and changes in hair/skin products).  Small outbreaks of DH still occur, mostly on scalp/hairline and upper back.  Not on a full GF diet, working toward it.

Kenzie- Onset in infancy.  Screaming to have BMs, GI issues always on side of constipation.  Belly bloat. Failure to thrive (9lbs 7oz at birth- 16lbs 2oz at 12 months).  Terrible “baby acne” and ezcema.  Screaming fits for no apparent reason. Tested negative for Celiac around 12 months of age.  Treated symptoms (Miralax, pediasure, vitamin supplements), labeled “difficult” child.  Throughout early childhood, suffered frequent facial discoloration (to the point we thought that was her “normal” appearance)… red and blotchy, especially around mouth and chin.  Purplish tone to nose and slight swollen look, aggravated when upset.  Bowel/GI issues remain constant, behavior resembles ADHD, frequent fits. Dx with asthma after a rough winter with three treatments for pneumonia, Spring of the same year, we received a probable Celiac Dx, removed gluten and have never had an asthma flare as severe. Response to a GF diet combined with elevated blood work, no biopsy. Facial discoloration and eczema disappeared immediately following implementation of GF diet.  Behavior improved dramatically within 6 months.  Bowel issues come and go, along with mood changes based on accidental exposure to gluten.  Full GF diet 3 1/2 years.

Kelsey- Biopsied negative (at the age of 3) despite other elevated liver enzymes), small stature (at 6 she weighs 38lbs), daily belly pain, bowel issues, reflux onset at age 3, frequent complaints about not feeling well, behavior issues (similar to ADHD), frequent fits, eczema.  We “should” have her screened again now that she is 6 and more likely to get an accurate result, however, since we are all moving GF it probably won’t happen. Gluten free diet- 2 months.

Kaylee- the “healthy” & “easy” child.  Onset probably between 9-10 years of age, but its possible we missed signs earlier.  Belly complaints (pain) started within 2 months of Dx, weight gain of about 20lbs over previous 15 months (not consistent with amount of height growth), including increase in belly bloat.  Developed headaches, ASTHMA, night time vomiting (we thought due to coughing hard from asthma?), lethargy, overall mood shift to more glum, less interested.  Occasional (becoming more frequent) complaints about joint pain (especially behind the knees), “allergic shiners”, disrupted sleep, spending more time in the bathroom but claims no bowel issues (and at her age, I don’t watch for bowel changes anymore).  The biggest correlation between Kaylee and Kenzie was the severeness of the asthma onset/flare in conjunction with Celiac.  Kaylee’s classic symptoms were so mild (in comparison to Kenzie’s bowel issues) that they flew under the radar.  We received a Celiac Dx inadvertently.  I had her in the peds office A LOT over the last month because this kid hasn’t been herself, the asthma, constant cough, lethargy, etc… was extreme.  When the Doctor decided to run blood work, I suggested we do a Celiac panel to “rule it out” due to our family history since they were poking her anyway.  Of all the blood work done, I was expecting to find either an infection in her lungs -OR- allergies.  Instead, we came back with a Celiac panel elevated to high moderate range in all three screens (tTg, EMA, DGP).  Our (amazing) pediatrician said that with all three screens elevated dramatically and a strong family history, she WOULDN’T put her own daughter (who is the same age as Kaylee Girl) through a biopsy.  She did give us a referral to a pediatric GI at OHSU/Doernbecher in case we decide to go through with a biopsy.  I immediately put Kaylee on a GF diet and we’ve decided that the biopsy won’t change how we handle this (since I biopsied negative, we know a biopsy may be incorrect or inconclusive).  The pediatrician has said this is Celiac, she feels strongly enough about the results & history coupled with her extensive experience to not feel the need for a biopsy confirmation.  Kaylee’s only medical history was the removal of her adenoids/tonsils due to chronic green sinuses (and I do mean chronic, she was the “booger” girl), sleep apnea/walking and severe snoring.

So, while I am apprehensive about moving our entire household to a gluten free diet (mostly due to the cost), I am hopeful that we will see improvements in everyone’s overall health.  Our household has been SICK for the last couple months, it seems like we have just been overran with skin rashes, asthma flares, coughs/colds, allergies, etc… I’m ready for everyone to start feeling better… hurry up SUNSHINE!

We are continuing with supplementation around here.  I’m trying to get back into the habit of culturing kefir and making smoothies for everyone (this family is really in need of healthy gut flora!).  I’ve switched the kids and myself to a whole food based multivitamin (I’m taking prenatals, since you never know.).  Everyone is still on Omega 3’s (fish oil) and I’m pondering Children’s Calm or Focus Factor, especially for Matt, Kenzie, and Kelsey (who all have a tendency toward elevated activity levels and behavioral shifts). I’m NOT doing dairy free any longer, but I am limiting Kenzie’s intake since she has a Casein allergy (which appears to be improving, she can tolerate small amounts of yogurt and cheese but still isn’t drinking milk but is drinking milk kefir).

My (so not a medical professional) advice…

If you suspect Celiac (remember, symptoms are very different in everyone), get a Celiac panel done BEFORE going gluten free.  Use your discretion regarding the biopsy, especially if you are going to do the diet anyway (many people improve dramatically on a GF diet, even in the absence of Celiac).  Ask for the test if you have any history or any suspicion, even the best doctors may not test right away if your symptoms are not classic.

What we ate for dinner last night:

(Fed 10 plus leftovers)

5 cups brown rice (cooked with 10 cups water)

2 jars Bertolli alfredo sauce

1 package frozen Tilapia fillets

1 lb  frozen mixed vegetables

Large mixed greens garden salad w/ toms, cucumbers, & mushrooms

First I started the rice in the rice cooker and then prepared the tilapia in butter, salt, & pepper.  Once the rice was done, I poured it into a large serving bowl, topped with the warmed alfredo sauce and added the fish (crumbled) on top.  We heated the frozen mixed veggies and served on the side along with a large green salad.

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About PolkaDotMommy

Wife to a teacher extraordinaire... Mama to Five littles... Conservative Catholic Christian with a Strong Environmentalist Mentality... Respecting Life... Living for our Savior... Learning to trust God in all things.
This entry was posted in Family, Food, Gluten Free, Gluten Free Recipes, Supplemental Nutrition and tagged , , , , , , , , , , . Bookmark the permalink.

2 Responses to So, You Have Celiac

  1. amie says:

    Did they go a gene test or just test IgA levels? I have 2 copies of the gene and so far 4 of my kids have one gene. My grandma wad diagnosed with CD over 20 years ago so I’ve been getting IgA levels checked annually.

  2. I’m a double gene carrier, 2 of my girls have 1 gene and the 3rd we haven’t tested genetics yet.

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