Cheating Before Gluten Challenge

[josaturn1]

Hello!  New here.  I am a mother of a 9 year old girl.  Run down of her past:

 

Colic, Sleep problems, Extreme emotional reactivity from birth, pulled hair out from 1.5 until 4yrs, therapy since 3, very intelligent (in gifted program now), petite, growth rate slowed from 75th percentile at age 3 down to 3rd percentile at age 5 (same now), always loose fatty looking stools, stomach pain, diagnosed with acid reflux, gassy, daily headaches. At age six she was writing very scary notes about wanting to not exist and drawing herself with bloody tears and snakes for hair.  

 

Allergies tested: No food allergies, takes claratin for seasonal allergies

Pediatrician thinks her growth rate slowed because she was breastfed.  I don't think that makes sense.  I stopped nursing at 1.5yrs.  

Her father believes he has ulcers and often avoids eating to avoid pain.  Her paternal grandmother has stomach issues as well and says it is colitis.  Her father also had stomach problems.  No one has been tested for celiac.  

 

At age 6, out of desperation and through tons of research, I asked her therapist if she thought my daughter might improve emotionally with a gluten free diet.  At that time she was taking medication for acid reflux but her stomach issues weren't improving 100%.  She said it couldn't hurt. I was frightened at that time for her future.  Within months of changing her diet, her stomach issues disappeared and we took her off the medication and she was able to eat dairy again without problems.  The best part?  Her mood dramatically improved.  Things weren't completely fixed, but she recovered much easier from meltdowns and cried a LOT less.  We were able to suspend therapy and I no longer had to walk on eggshells.

 

Problem is her father, who is loving and wonderful to her, believes cheating once or twice a week isn't a big deal.  He has good intentions, but she comes back from his house a holy mess every weekend.  I get her back to normal (gluten-free rest of week) so when he gets her she is back to normal.  After 2 1/2 years of this, we decided to discuss getting her tested.  I believe my daughter, her father, and other family members need a diagnosis in order to take it seriously.  We are 1 1/2 months into a gluten challege.  The first week was AWFUL!  My sweet girl became violent and very angry.  She flew off the handle over nothing.  She became OCD and believed her sister is contaminated.  She disinfected her bed with lysol and bagged her stuffed animals and pillows overnight for "decontamination".  She had an explosive incident and said "I F******* Hate You!!!!" and threw a marker at my head.  This same girl normally gets very upset when I say "crap".  She can not sit with us while we eat because we "sound gross".  At night when she has had time to calm down she is very remorseful and loving.  Second week the anger mellowed out some and the stomach issues have returned.  The first day of school she laid in the office during recess.  She says her stomach feels "big but empty".  She is VERY gassy and having a headache every day. She is less angry, but cries a ton.

 

Sooooo, even dad is seeing these changes and I think he's even wondering if he has celiac lol.  My HUGE worry is that because she is doing a gluten challenge for three months after such a long time gluten-free that we will get a negative test.  Do you think her cheating once or twice a week at dad's might make it more reliable.  She will be on gluten for three months at the time of testing.  

 

Her dad and I agreed she could stop now if she wants but she says she wants to finish and find out the truth.  

 

Any words of advice or encouragement would be so helpful right now.  Thank you.

[greenbeanie]

Sounds like your whole family is going through a lot - I hope you get clear results from testing! There doesn't seem to be much consensus about how long of a gluten challenge is necessary after not eating it regularly, but this does sound like a case where her previous cheating by eating gluten once or twice a week may turn out to be helpful. 

 

My daughter had three clear positive blood testes and a positive biopsy at age four, after having relatively little gluten for her whole life. We did just a one-month gluten challenge leading up to the testing, with only one child-sized serving of gluten per day during that month. Until she was 18 months old she rarely had gluten because we were trying to sort out allergies and reflex/gagging problems. From 18 months through age 3 she had wheat crackers or cereal a few times a week. She probably also had trace amounts in condiments and whatnot on most days, since we weren't specifically avoiding gluten, but she was eating way less of it that most other kids her age. Right after she turned 4 we finally figured out the problem and got all the tests done to confirm it. Like your daughter, she'd had all sorts of issues with emotional regulation, irritability, tearfulness, colic, sleep troubles, etc. since birth. Of course I can't know this for sure, but I strongly suspect that her tests would have been positive even on her previous gluten-light diet (without the gluten challenge). 

 

If it is celiac, it sounds like a definitive diagnosis would be really important to make the rest of your family take it seriously. It's great that your daughter herself is on board with wanting to know. If you can get the doctor to run as many of the tests on the panel as they can (especially the DGP tests), that may help reduce false negatives. 

 

Hang in there! Although it's hard to feed a child foods that you see making them sick (even temporarily), it will be over soon, and hopefully she'll improve quickly if everyone supports her in sticking strictly to a gluten-free diet.

[nvsmom]

Poor kid, and poor mom.

 

If it's a negative test, I think you have two options:

1. tell everyone she has NCGI (non-celiac gluten intolerance) and stress how it is every bit as damaging and systemically systematic as celiac disease is, just minus the villi atrophy, or..
2. Lie. If they won't take NCGI seriously, tell them it "looks like celiac disease" (which NCGI does) and then just move on from there.

Do you know what tests she is having? The DGP tests tend to become positive sooner on a gluten challenge than the tTG tests would (EMA test generally being the last to become positive). I would push for as many types of tests as possible (tTG IgA, tTG IgG, and DGP IgA, DGP IgG) so you have a greater chance of accuracy.

 

Good luck!