Are There Any Differenses In The Symptoms Of Celiac And Non Celiac Gluten Sensitivity?

[Mum in Norway]

Is it posible to tell them apart from the symptoms?

 

My daughter is 3,5 years old, and had issues with gluten that startes 2,5 years ago. She was tested for celiac (only bloodtests, and I never saw the results) but test came back negative. We took her off gluten when she was a year, and she was fine without. Along with the doctor we did several challanges. The first two times she got realy ill on the third day, so we stopped, but by the third challange, she showd no reaction, so doc said she had grown out of what ever it was. That was 10 months ago.

Then, latly, she has been complaining about stomace ace and pains in her arms and legs, sometimes so bad she needs painkillers to be able to sleep. She also cries very easily, is afaid of alot of things that's not normal for kids her age and she often seems to forget what she is talking about midd sentence. I had her tested for celiac again, and got the results today, they're absolutly fine, thou not complete by my opinion. So I'm not sure if I should push for any more celiac testing, or just try to take her off gluten again to see if thtas the problem again?

She is growing fine, tall for her age and not under/over weight

[nvsmom]

Not really.

I had celiac disease my whole life, and as a child I had stomach aches after eating, constipation that could hurt a fair bit, and sore joints (knees). I was very tall for my age, usually at the top of the chart or off the chart, and slim. I was extremely "easy" I have been told, and rarely cried. No allergies or any (recognozed) health concerns except for a lazy eye.

 

I have two boys who have tested negative for celiac disease who have gluten intolerance (could be celiac disease - who knows) and they have slightly different symptoms. My oldest's behaviour and concentration is negatively affected by gluten; he also gets headaches, some C, and stomach aches from it. I also suspect his growth was affected by it and has thrown off his thyroid.... just need to find a doctor to agree with me now. My youngest got D from gluten and was in the bathroom a good half a dozen times a day.

 

Around this forum are some with NCGI who have had symptoms much more severe than me with multiple health issues and deficiencies (I had almost none). Some researchers are starting to consider celiac as just being on the "spectrum of gluten intolerance", although that is not widely accepted .... yet.

 

There are over 300 symptoms of celiac and NCGI; symptoms are a pretty individual thing. It sounds like she has NCGI or serologically negative celiac (some just have a positive biopsy). Either way, if she was doing better off gluten, I would make her gluten-free (once testing is complete).

 

Which tests were run BTW?

[w8in4dave]

Wow poor kid!I always feel so bad when it is a child. The thing with celiac. You can have no symptoms or a ton of them. Once off of gluten if your daughter does better if your sure it is gluten. I don't think she will ever grow out of it. I will be a life changing diet. But better for everyone involved. Good luck wish her all the best.

[AlwaysLearning]

I don't have any experience with children of my own, but as I've thought back to my childhood considering possible early indicators, I think there may have been some that were completely different to anything that I experienced as an adult. I still wonder if my constant sleep walking was caused by my GERD, which back then they said was just normal for children and that they'd grow out of it. I did grow out of it, but nowadays, they don't consider it to be normal.

Can you do a food diary for her? That could help you determine if gluten is the problem, or perhaps some other allergen.

[Mum in Norway]

Thank you for all your insights!

I just talked to the doctor. Told him I still strongly suspected gluten even thoug the tests for celiac were negative, and we agreed to make her glutefree for a while to see if she felt any better. He said it coud be NCGI or just a sensitive gut of some sort, but she has been throu so many tests now, that it seems the best way to find out is just to try elimination. If gluten doesen't do the trick, we'll try something else, but so far gluten is the maine suspect.

 

Lately I have talked to her abit about glutenfree, and that maybe the doc would say she needs that to feel better. She asked what 'glutenfree' is, and I said it's about what we eat. That all kins of fruit and veg and fish, meat, berries, juices, most icecreams and popsicles, choclates, potatochips and things are glutefree, but that there are some types of bread, cakes, cookies, pasta and stuff where we will ned to get the right kind that is glutenfree. She said that sounded easy, and this morning she asked me if we had any glutenfree bread thet she could try for brakefast, and asked if she could take some with her to kindergarden as well. So I don't think it's gonna be very hard to make her glutenfree

 

I have been thinking of making her a food diary, yes, so I will start that this week, and also write down any complaints about stomace/joint pain or other things taht could be related.

 

Her tests and results were:

 

DGP-IgG   1   (normal <7)

tTG-IgA     <1 (normal <7)

Total IgA    0,4  (normal 0,3-1,8)

[nvsmom]

Her total IgA (a control test) is pretty low and that could make it harder to get a positive in the celiac IgA based tests (tTG IgA), but those look negative so chances are it is NCGI. There is a chance it is celiac but the antibodies aren't elevated enough to measure through a blood test yet. I think it's a good idea to have her eat gluten-free rather than keep retesting while eating gluten.  I hope she feels really good soon.

 

Udi's and Silverhills gluten-free breads aren't too bad, but you might want to switch to good homemade gluten-free muffins for lunches - my family doesn't like gluten-free bread unless it's toasted.... but they're all picky eaters.  LOL

 

Best wishes.

[Mum in Norway]

Thanks for the advices

I got her glutenfree crispbread and a kind breakfastbread that she really likes today, and baked a loaf of glutenfree bread based on a mix but added proteins and fiber, eggs and butter to make it tasty and healty. She was realy impressed

Will bake more stuff tomorrow, I have a load of gultefree recipes, as I normaly avoid gluten myself, and she used to be off gluten untill last fall.

[w8in4dave]

It is wonderful the way your talking with her and informing her of what it is. Kids will understand more of Why they cannot have that cookie if you explain it to them. She sounds like a wonderful lil girl . Good luck! I hope she feels better soon.