Could this be Celiac?

[Rhyanna C]

Hey everyone,

We are pretty new to this but some of the threads i've been reading have made me pretty confident that my youngest has celiac, even perhaps myself.

So earlier this year my 5yr old daughter started having stool accidents and the occassional wee accident, mostly the wees were a little dribble and the poos were small amounts.
The doctors palmed it off as behavioural but no amount of reward, growling, bribery or anything has worked at all for her and she's getting quite self concious about it. After the docs decided it was behavioral, I decided it was constipation, rang the nurse and she confirmed it well could be and prescribed laxatives which helped clear her out and she seemed fine for about a week then they started sneaking back in again and i've just palmed it off again and again but they recently got bad again. Laxatives are't seeming to stop the accidents. She says they sneak up on her and she can't feel them - sounds to me like encopresis.

She is an rather strong willed difficult child. She has very big emotions and her moods can change at the drop of a hat and she's very fragile emotionally. Can cry or blow up over absolutely nothing. 

She was allergic to dairy as a baby and that always used to cause constipation but she seemingly outgrew it.

Family history: About 2 years ago my 1st cousin on my dads side was hospitalised with a mystery illness, turned out to be celiac. His immediate family were tested and my Aunt has celiac, my cousins sister has the gene but not active though her 2 kids are celiac.
My grandma on dads side apparently suffered life long struggles with constipation and my aunt thinks she was likely undiagnosed celiac. I have also suffered with life long constipation too.

We have an appointment at the doctors to discuss it and hopefully have bloods next week (we are still currently eating Gluten) but I just wanted some other opinions as I keep convincing my self of it, and then out of it based on what I read.

What are your thoughts, Thank you for reading 
 

[trents]

Welcome to the forum, Rhyanna!

Sounds like your 5 year old could very well have celiac disease. Symptoms and family history on both sides make that a strong possibility.

At her young age, it would be important to get a "full" celiac panel, and not just the tTG-IGA antibody test which most physicians prescribe. This would include:

• total serum IGA (very important as lower than normal in this one can individual IGA antibody tests downward toward the negative range).
• tTG-IGA
• EMA
• DGP (both iGA and IGG)

The tTG-IGA is great for adults but often produces a false negative because a young child's immune system is immature.

Here is a primer: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Our experience as a community is that many doctors are not knowledgeable about gluten disorders and you need to be politely assertive, armed with knowledge, if you want through testing done.

By the way, I love your name. It is quite unique. Is there a family history behind it.

 

[Scott Adams]

Be sure she keeps eating gluten daily, lots of it, until all tests are completed:

 

[Rhyanna C]

Thank you both for the reply, We are definitely still eating our usual amounts of gluten. I'm fairly convinced it is Celiac. I wish that the process didn't take so long before we could move to a gluten free diet. I'm dealing with almost daily accidents with my daughter and it's severely affecting life now.

[trents]

Keep in mind that the doctor may also want to order an endoscopy with biopsy to confirm the antibody results if they are positive. She should not cut back on gluten until all testing is complete. Though, at her young age, the doc may be reluctant to order an endoscopy.

Edited July 19, 2023 by trents

[Rhyanna C]

Thank you, Yes I am aware the process may be drawn out, Thank goodness I've health insurance to hopefully speed it up a little if required, it's just so frustrating being in this limbo state.
This morning she complained so vigorously of being too tired for school and I just don't know what to do - Are you actually tired or have you cottoned on to whatever we've been discussing and are just putting it on to get out of school. She's always been a bit that way - boy who cried wolf so I am just so torn. 
 

[Rhyanna C]

Is it common for symptoms to progressively or suddenly get worse? She's always been more tired than my other child and more difficult and complained of sore tummy's etc but I always put it down to her just wanting to be difficult. Things seem to be getting worse though perhaps thats because I'm now aware of what I'm looking for whereas I wasn't before?

 

[trents]

5 minutes ago, Rhyanna C said:

Is it common for symptoms to progressively or suddenly get worse? She's always been more tired than my other child and more difficult and complained of sore tummy's etc but I always put it down to her just wanting to be difficult. Things seem to be getting worse though perhaps thats because I'm now aware of what I'm looking for whereas I wasn't before?

 

Progressively worse, yes but rarely suddenly. We have some reports on the forum of people who believed the onset of their celiac disease coincided with contracting COVID, or at least that it ratcheted up as a result of COVID. Mood disorders have been connected with gluten disorders and you will find them on many celiac disease symptom lists. Plus, when we hurt and don't feel good we generally don't put forth our best foot behaviorally speaking and children aren't mature enough to mask it like adults.

[Rhyanna C]

Interesting about the covid angle!

[Wheatwacked]

Trust your daughter.  She is not faking. She is dealing with physical responses that everone tells her are not real. Very confusing.  Tell the truth and be called a liar and faker.  About the mood swings, get her vitamin D level checked.

I was 63 before I discovered the reason I could not breath through my nose was not "just the way it is".

Pancakes, bacon and eggs.  I could never finish the pancakes but plenty of room for more bacon and eggs.  Add a glass of milk to the pancakes and I would get nauseas. I had to finish the pancakes first.  Accused of just being picky.

When asked what I want for dinner, I always answered spaghetti and meatballs.  It was what I wanted, why answer different? As punishment mom gave me spaghetti and meatballs for a week, expecting me to tire of it, but I was in heaven.

Best of Luck!

Dr Amen has done a lot of work with ADHD and gluten free diet.  Asperger also responds well to gluten free, nutrient dense diet.