Celiac and Anxiety in 7yr old

[Sue M]

Hello everyone,

I'm new here, and hoping to get feedback from more experienced celiacs.  My 7yr old daughter began complaining of a sore tummy back in July.  Aside from saying "mommy, my tummy hurts" she showed no signs of being in pain.  She called from school one day after lunch, crying and complaining of the sore tummy, yet when she got picked up, she seemed fine, asked for a snack, and had all kinds of energy to run around and play.  The complaints began to occur daily, but only Monday-Friday mornings, which had me thinking she just didn't want to go to school.  School drop offs became nearly impossible, as she would cling on to me for dear life, crying and inconsolable - and once she got away with staying home, would immediately relax and appear completely fine (and no more complaints about the tummy).  I took her to the doctor, and left with a pamphlet for a psychologist, thinking she is suffering from some form of anxiety.  The next morning was much the same, and I gave her an ultimatum - school or blood work.  Bless her little heart, she wrote me a letter saying "dear mom, here's how you can help me.  Take for my blood test, and keep me home" - so off we went back to the doctor, and got a requisition for lab work.  Since we weren't suspecting anything in particular, she ran several tests.  The next day, I received a call with results.  Her TTG came back at >250.

this broke my heart.  I'm glad we found out, but prior to this, I was telling her things like "there's nothing wrong with you!" (Because she would be eating, playing, running around, not looking like she was in any pain).  Felt like the worst mom fail in the world.  I now realize that her anxiety came from anticipating pain, and not having mom or dad around for comfort.

my questions - is the high reading on her TTG enough for a definite celiac diagnosis?  The doctor said she didn't think a scope would be necessary with such a high number.  

We have been gluten free since the day we found out.  How long till we start seeing results?  Because she doesn't "look" like she is in pain, I often have to ask her how her tummy is feeling (she doesn't complain often anymore).  She says it still hurts, but not as bad.

Her anxiety has persisted, and is preventing her from doing things she loves, like going into her dance classes.  She does not want to quit, but is paralyzed when it's time to go in.  Back to school was a nightmare for the first couple of weeks, but she seems to be adjusting now. We have been seeing a naturopath, who has given her a few things to help with healing, as well as anxiety, but it feels like slow progress.  I just want her to be happy and healthy again.

any tips on what could help?

thanks in advance for listening

 

 

[StephanieL]

I am sorry about all this.

The first thing you need to do is get to a GI Dr. for testing and a scope.  Even with the high numbers, you really should have a "baseline" biopsy and most Dr's are going to insist on it.  The bad news is that your daughter needs to be on gluten for that to happen.  I am sorry your Dr. wasn't more clear on the appropriate way to test for Celiac.  Doing the biopsy is the gold standard and even top Celiac Dr's who with adults so with a "4 out of 5" criteria- they want a positive scope to dx.  How long as she been off gluten?  We were in much of the same boat as you were when my kiddo was 3.  Super hight tTG's, fairly asymptomatic (he couldn't verbalize the pain really but was a terrible sleeper and had bad GI stuff we didn't know was abnormal as he was our first).  He was positive for the genetics but his biopsy was negative.  Fast forward 5 years and still elevated tTG's with no explanation and a trip to a world class Celiac expert- they want a challenge and scope.  I only tell you this because a reintroduction and scope would be easier now than say 5 year down the gluten free road.   (Again, this may not be your road and I would support you in whatever you would decide is best for your family but just putting it out there that this is how these things can go).

 

Anxiety is often associated with Celiac disease.  Hopefully that will decrease in time though with kids there are often developmental issues psychologically speaking-  often with kids who have "food related" issues the ages of 9-11 seem to awaken some turmoil in them.  There aren't a ton of good child psychs who get the food issues but perhaps you have some in your area.  

[Travelin' Celiacs]

I disagree strongly with StephanieL. Many GI's, including ours who is nationally recognized, no longer recommend/require a biopsy to confirm celiac when the tTG is over a certain level.

There are so many reasons not to do a challenge. Putting the child back on gluten may harm her physically, it will certain do a number on her mentally - "Mommy told you eating gluten would make sick, but now you have to eat it again and put up with the pain in your tummy" - and it may have a big impact on your parent-child relationship: how she trust you when you force her to do something that will make her fell sick and cause her pain?

We were lucky enough to speak with Dr. Joseph Murray of the Mayo Clinic not too long after our son was diagnosed. He said one reason NOT to do a gluten challenge is that celiac children often start to grow, both physically and cognitively, after they stop eating gluten, and a gluten challenge during periods of rapid growth is particularly harmful as it may disrupt or derail the growth. From your post it seems that your daughter is gradually feeling better gluten-free; with a tTG >250 I would expect it's going to take a while for her to feel "normal" again. She's been seriously ill even though she didn't look sick.

Anxiety: my son has serious malabsorption secondary to celiac, and he's been gluten-free more than a decade. We saw a neurologist a couple years ago, and one of the tests he did was a complete amino acid profile. Turns out one of the things my son wasn't absorbing was an amino acid linked to anxiety and brain function. Within a week after he started on specific amino acid supplements his anxiety level dropped by 90%. Part of your daughter's anxiety may be organic, a result of her inability to absorb sufficient nutrients - another reason to let her gut keep healing and NOT do a gluten challenge.

Your daughter should see a GI and have a complete nutritional assessment. That means reviewing her growth since birth (so bring records), evaluating her diet for nutritional gaps and bloodwork to assess her vitamin levels and determine what supplements she may need to catch her up to normal, healthy levels. At some future point you may want to consult a immunologist to evaluate whether her vaccinations "took" and she developed immunity. Anecdotally I know many celiac kids whose didn't, including my son. 

Finally, find a support group and help her connect with other celiac kids. That alone may alleviate her anxiety about being celiac.

[JILLREYN]

I AGREE YOUR CHILD NEEDS TO BE ON GLUTEN FOR TESTS TO BE ACCURATE..

THESE ARE THE LABS THAT ARE RECOMMENDED..IF YOU LIVE IN ILLINOIS I RECOMMEND UNIVERSITY OF CHICAGO CELIAC

Open Original Shared Link

THE DOCTORS THERE ARE AMAZING FOR COLONOSCOPY AND ENDOSCOPES.....ONCE TESTED AND IF SHE HAS CELIAC I RECOMMEND GOING TO A DIETICIAN WHO SPECIALIZES IN CELIAC DISEASE THERE ARE SO MANY FACTORS TO KNOW...YOU CAN REACH OUT TO ME TOO IF SHE IS POSITIVE...I HAVE GENETIC CELIAC AND STARTED TO COMPLAIN AT 5 YEARS OLD OF TUMMY ACHES..AS A RESULT AND KNOW ONE LISTENING TO ME OVER THE YEARS IT BECAME A FULL BLOWN EATING DISORDER WHERE I RESTRICTED EATING FOOD FOR YEARS AND AT 28 YEARS OLD ONLY WEIGHED 97 POUNDS AND MY EYES WERE SUNKEN IN....

TISSUE TRANSGLUTAMINASE ANTIBODIES (IgA, IgG)

GLIADIN ANTIBODY PROFILE (IgA, IgG)

HLA TYPING FOR CELIAC DISEASE (HLA-DQ2, HLA-DQ8,HLA-DQA1,HLA-DQB1   Celiac Genetic Test)

[mommida]

A gluten challenge can be dangerous for young children.  My daughter ended up hospitalized for dehydration.  (She was 16 months old.)  The panel was drawn.  She had 2 positives.  The scope was not done at that time because she was so sick.  (Diagnosed as probable Celiac positive genetic testing for DQ2 and DQ8 along with improvement on a gluten free diet.

When she turned 6 years old, all symptoms of glutening and worse.  She started vomiting up to 5 times a day, small amounts like GERD.  Episodes of "D" and constipation, she wasn't growing and her hair was falling out.  She was diagnosed with Eosinophilic Esophagitis from an endoscopy with biopsies.  No Celiac damage was detected as she had been gluten free for over 4 years at that time.

Testing has risks.  It can be helpful to have a baseline of damage and rule out any other diseases/disorders.

I agree with the poster who suggested malabsorbtion could be a possible cause for the anxiety.  (In particular ~ vitamin B12 deficiency causes anxiety. Another possibility to consider, Pernicious anemia ~if the gut lining lacks the *intrinsic factor* (not sure if I'm wording that correctly) to absorb vitamin B12 it causes anemia.  Strong connection to Celiac.

There is also another recently discovered condition ~ PANDAS.  This occurs with a infection (it seems Strep is most common).  The immune system goes over destructive, but not just on the infection ~ but on the brain.  It seems like a child goes all out OCD almost overnight.  The treatment is to "calm" the immune system and get the natural brain chemicals in sync again.  ( I may not be 100 percent accurate on trying to explain this in the laymen's terms in which it was described to me, so do some research)

All of these are just points to consider, and definitely take her back to the doctor (hopefully specialists) for the best care.

 

[Sue M]

Thank you all for your input.  I appreciate all the information as we navigate through this new phase in our lives.  I will seek a GI to get further answers.

We have been seeing a naturopath, and are trying a few different remedies that seem to be helping with the anxiety.  Her thought is that the anxiety will continue to improve as her gut heals.  However, I'm also going to look into the possibility of malabsorption due to celiac.

Thanks again, everyone!