Reality Check

[SolveigB]

We have a almost 9-year old daughter who has struggled with her stomach since she was 6 months old and we started giving her food besides breastmilk.

Since then we have been to several doctors, tested for every food allergy there is (both in blood and on her arms), tests for lactose intolerance are negative (genetic, in blood and we also did a breathing test), she doesn't have Chrons or ulcerative colitis, the genetic test for celiac disease and the celiac panels are all negative.

Now I'm starting to think that I'm exaggerating her symptoms, maybe she's fine.

These are the facts:

She has had diarrhea "forever", sometimes as thin as water sometimes as thick as porridge. I apologize for the details. she visits the toilet at least 2 times every day.

After christmas she had blood in her stool, this is confirmed in 3 stool samples. There isn't blood every day, but from time to time maybe once or twice a week.

She is anemic, her ferritin? (my dictionary didn't have a translation from norwegian) is dropping from 31 in January last year to 14 this February. Her hemoglobin is 11.7, and some other ironlevels (MCV/MCH) are slightly low.

Every other test is fine and negative as I wrote.

She has stomachaches every single day, mostly in the evenings combined with the diarrhea.

This week we have started a fooddiary, maybe I am able to see a connection between food and pain.

I think I just need some confirmation that this isn't normal for a 8-year old girl. Any thoughts anyone?

[Brittany85]

I'm certainly no expert, but that definitely doesn't sound normal to me. I've read that celiac tests can show false negatives. Did she have an endoscopy?

[Nannu]

We have a almost 9-year old daughter who has struggled with her stomach since she was 6 months old and we started giving her food besides breastmilk.

Since then we have been to several doctors, tested for every food allergy there is (both in blood and on her arms), tests for lactose intolerance are negative (genetic, in blood and we also did a breathing test), she doesn't have Chrons or ulcerative colitis, the genetic test for celiac disease and the celiac panels are all negative.

Now I'm starting to think that I'm exaggerating her symptoms, maybe she's fine.

These are the facts:

She has had diarrhea "forever", sometimes as thin as water sometimes as thick as porridge. I apologize for the details. she visits the toilet at least 2 times every day.

After christmas she had blood in her stool, this is confirmed in 3 stool samples. There isn't blood every day, but from time to time maybe once or twice a week.

She is anemic, her ferritin? (my dictionary didn't have a translation from norwegian) is dropping from 31 in January last year to 14 this February. Her hemoglobin is 11.7, and some other ironlevels (MCV/MCH) are slightly low.

Every other test is fine and negative as I wrote.

She has stomachaches every single day, mostly in the evenings combined with the diarrhea.

This week we have started a fooddiary, maybe I am able to see a connection between food and pain.

I think I just need some confirmation that this isn't normal for a 8-year old girl. Any thoughts anyone?

Hi,

I am also not so old in this forum, but from whatever i have in posts here, may be it is worth trying GFD for a while, and your DD feels better with her symptoms. Sometimes, people have benefitted within one week of starting GFD. May be more experienced people here are able to give a better view. All the best and i hope you are able to get your answers soon

Take care

Nannu

[SolveigB]

She has not had a biopsy done yet, and the doctor didn't seem to be very willing to refer us to one since all the celiac bloodtests are negative. I don't want to try gluten free until I know whehter she will have a biopsy or not.

She has had a good week with very little stomachache, only in the evenings and it hasn't been very painful. The fooddiary gives me no answers, but we have only been doing it this week. And then I start to wonder if it's normal, and maybe it isn't as bad as I have been telling the doctors. We have been through this before and I know there will come days where she lies on the bathroom floor crying because her stomach hurts. I was so sure it was celiac disease, and now I'm not sure of anything.

We will try milk free, and then gluten free. We just have to wait until all the tests are done, and I will fight for a biopsy. She has blood in her stool, and I want to know why.

[researchmomma]

I could have written your post except our issue was constipation. My daughter was negative on blood and does not have the genes so they wouldn't biopsy.

We decided to take her off gluten for 3 months and see if helped. Well guess what? It did and it has been fabulous.

Now her doctor has diagnosed her as Non Celiac Gluten Intolerant. I went in with a list of symptoms and crossed off the ones that had resolved and the doctor was very pleased.

Those symptoms you mention are not normal for a child so it certainly can't hurt you to try gluten-free.

You know what my favorite change is? Her moods. She was in pain for so long from gluten that she was just miserable and not really fun to be around. That is no longer the case. I wish I had tried gluten-free earlier! She is still zero percentile for weight but we are hoping that changes soon.

I say give it a try.

[mushroom]

Perhaps you could strike a bargain with your doctor. Have her eat gluten free for one week, continuing with her symptom and food diary, and see if there is any change. If she improves, the bargain would be that the the doctor would order the biopsy (you would have her resume eating gluten untill this could be scheduled, and one week off gluten should not affect the results). Of course, there is always the possibility nothing would change in one week but it is worth a trial and there is nothing to lose..

Then you wuld put her back on gluten free, permanently if positive and for a good three month trial if negative to see how she responds. She may be non-celiac gluten intolerant or she may have one of the more uncommon celiac genes.

Best wishes in taking care of your daughter.

[SolveigB]

Thank you so much for answers.

I'm going to call the pediatrician on wednesday, and I will insist on a biopsy. If he won't give us one I will ask for a referral to a nutritionist, together with her we will start a dairy and/or gluten free diet.

I keep telling myself that diarrhea isn't normal, that we need to find out what is causing this. Right now she's fine, and it's so easy to "forget" how bad she gets.

[researchmomma]

Perhaps you could strike a bargain with your doctor. Have her eat gluten free for one week, continuing with her symptom and food diary, and see if there is any change. If she improves, the bargain would be that the the doctor would order the biopsy (you would have her resume eating gluten untill this could be scheduled, and one week off gluten should not affect the results). Of course, there is always the possibility nothing would change in one week but it is worth a trial and there is nothing to lose..

Then you wuld put her back on gluten free, permanently if positive and for a good three month trial if negative to see how she responds. She may be non-celiac gluten intolerant or she may have one of the more uncommon celiac genes.

Best wishes in taking care of your daughter.

I wish I had thought to do that!

[SolveigB]

I talked to the doc yesterday, and he is referring us to an endoscopy. I asked for a gastro?scopy too (the endoscopy is just the colon, and the gastro?scopy is in the small intestine where evidence of celiacs would be) , but he wasn't very willing to do that. He promised to talk to the doctor who is performing the scopies, and in the meantime he wanted us to try a very strict dairyfree diett.

[mushroom]

Generally, when we talk about an endoscopy on this forum we are referring to an upper endoscopy, or apparently gastroscopy as it seems to be called in Norway. The lower endoscopy is usually referred to as a colonoscopy and cannot diagnose celiac - only the gastroscopy can do that.