8 year with Coeliac

[Dan Maggs]

Hello

My daughter who is 8 was diagnosed with Coeliac at 4 years old. Her symptoms were tummy pains and very bizarre stool colour, extremely pale.

She is strictly gluten free and we now know if she has accidentally had gluten as she immediately is very sick and just sleeps after.

Since her diagnosis she still complains of tummy ache, is quite gassy and her stools can still be, sometimes, pale and float. This makes me think that there is still a malabsorbtion issue.

We have been back to the Dr but find them quite 'wishy washy', in other words, not much help.

My husband and I have started a food diary and have cut milk out of her diet to begin with to see if this is causing an issue..

Has anyone else experienced something similar or know what could be causing the problem...

 

Thank you

[trents]

Welcome to the forum, @Dan Maggs! It is a good idea to try cutting out dairy because celiacs are often lactose intolerant or cross react to the protein casein in dairy. Oats is another common cross reaction offender because the protein avenin in oats is similar to gluten.

[Scott Adams]

Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months.

Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal.

Is there any chance that your daughter could be getting gluten at school, perhaps from her friends at lunchtime?

 

[Dan Maggs]

Hi Scott.

 

Thank you for responding.

Emily has been strictly gluten-free since diagnoses 4 years ago. We have had the odd slip up at the beginning but for the last 2 years she has been totally gluten-free.

We removed oats about 5/6 months under the instructions of the DR.

Now if Emily has gluten-free she immediately projectile vomits, however little and has bad tummy pains - she knows immediately when she has eaten Gluten. So I don't suspect school or friends (plus most of the time she takes a pack lunch.

 

We have started a food diary and are eliminating Mill at the moment to see if that makes a difference. 

[Scott Adams]

This article may be helpful:

 

 

[Paula McVicker]

Hi DanMaggs

Congratulations on taking extreme care with your daughter's health. I bet no one has ever said that to you?!

I have a question, which you may or may not have thought about.

Has your daughter become a victim of some "bullies" that think it's funny to contaminate her food without her knowledge just to see her reactions?

It's an awful thing to think about but I myself experienced a lot of this type of thing growing up & it's extremely hard to detect.

After all an ounce of gluten is all it takes.

Good luck on your discovery journey I wish you well

[RMJ]

Has your daughter had repeat antibody tests?  If so, are they in the normal range or still elevated?

[trents]

  On 6/28/2024 at 6:43 PM, RMJ said:

Has your daughter had repeat antibody tests?  If so, are they in the normal range or still elevated?

Expand Quote  

Good question and should be pursued to rule out cross contamination or other overlooked gluten exposure.