My Daughter Is Miserable, Possible Celiac?

[AKSheridan]

My 10 year old daughter has been having a number health concerns. After some allergy testing revealed several possible food allergies, we did an elimination diet to see what she would react to. We discovered that almost all of her symptoms went away on the diet. YAY! We slowly brought everything back in and determined that gluten was the culprit so I took her back off. Well now of course I have put her back on it for the testing. We have 3 weeks left to wait and it's agony! She feels terrible again. I want to just give up and remove the gluten. Should I stick it out for that test?? What is the minimal amount of daily gluten she needs for the test to be accurate? The worst is her mood swings...she's an emotional mess. It makes me so sad for her! 

 

Symptoms:

- daily episodes of seeing colored shapes in her vision for a few minutes at a time (this is really the only thing that did not get better during the 3 weeks of being gluten free)

- wild mood swings/irrational anger/panic attacks...between meals and especially after ingesting sugar (hypoglycemic?)

- noticeable abdominal bloating, burping, flatulence and reflux

- loose stools containing globs of mucous

- occasional stomach pain couple times a week, but every few months it's quite extreme and causes her to scream and cry in agony, and turn pale and sweaty

- occasional unexplained vomiting, a couple times a year only

- dark under eye circles

- slight hand tremor

- tingly fingers

- multiple seasonal, enviromental and food allergies

- very tired and irritable

- Slowly falling on the growth curve. As a toddler she was 90th percentile for height, now she is at the 50th.

 

She's scheduled for an EEG next week, and an MRI March 7th. because of the vision issues.  Her neurologist is running pages and pages of labs on her while she is sedated for the MRI (she's  terrified of needles), but did not order a celiac panel. When I asked to add it, she told me to have her pediatrician or allergist order it! I'm a little annoyed by that! 

 

Thank for any input and advice!!

 

Edited to add - She was only gluten free for about 3 weeks.

 

Also, could these symptoms be just an intolerance and not celiac?

[kareng]

Open Original Shared Link

 

What is a gluten challenge?

A gluten challenge is the period of time when gluten is added back into a person’s diet to assist in the diagnosis of celiac disease. Antibodies take time to build into the blood stream before they can be detected through blood analysis. For a gluten challenge we recommend eating 1/2 slice of bread or a cracker each day for the duration of the challenge.

• Prior to blood testing we recommend 12 weeks of eating gluten.
• Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten.

In the case of a severe reaction to gluten, a medical professional may opt to shorten the 12-week challenge and move immediately to an endoscopic biopsy.

 

 

This Celiac Center site has a lot of good info.

 

Maybe show the doctor this list:

 

Open Original Shared Link

[bartfull]

I can understand why the neurologist does not want to do celiac testing. It's not his field of expertise and he probably wouldn't know which tests to order, nor how to read them.

 

But I'm glad you are seeing him because those colored shapes she is seeing don't sound like anything related to celiac.

 

Even if she tests negative for celiac, she could well have non-celiac gluten intolerance. After all testing is through, no matter what the outcome, give gluten-free a good trial and if her symptoms go away you will know she needs to be gluten-free for life.

[AKSheridan]

Thank you for the replies!

 

As far as the vision issues, there is actually a type of epilepsy that can cause these symptoms, which just so happens to be linked to celiac disease in some cases. The celiac disease causes calcifications on the brain and causes the seizures. That's why I was a little surprised that the neurologist wasn't concerned with celiac.

 

Today has been  pretty good. We're holding strong on the gluten challenge.  My daughter is indulging in her favorite pastries because she knows it's over soon and won't be able to have that stuff!

[nvsmom]

I used to see coloured shapes when my hypotension became a bit too much and I was getting tunnel vision before passing out, but I don't think it was celiac disease related. Uveitis creates floaters in your field of vision and can be related to celiac disease.

Her symptoms could definitely be from celiac disease. I am glad she is being checked. The best celiac disease tests are tTG IgA and IgG, DGP IgA and IgG, EMA IgA , and the total serum IgA. Best wishes.

[AKSheridan]

nvsmom - thanks for the input. I'll be sure to watch her blood pressure readings at her upcoming appointments. Her eyes have been thoroughly checked.

 

Yesterday, my daughter chipped her tooth while eating...further adding to my stress and suspicions!! She also has poorly shaped teeth, that look yellow compared to my other 2 kids.

 

 

I found out something very interesting today. My grandfather's sister passed away from lymphoma. She did not know she had celiac disease until she was in her 70's, and passed away shortly after from the lymphoma. It's a distant relative, but makes me wonder how many other relatives may have it, and don't know it.