Celiac... Or something else?

[CaptainMummy]

The last few months, dd2 has not been hersfhe whatsoever.
She has gone from non stop ball of energy, to tired, lifeless and miserable. She complains of a sore belly multiple times daily, on and off constipation (sore belly is not due to constipation though) very pale/grey looking, very gassy, wakes up in the mornings still tired, lost all life about her and hardly ever plays around.
She doesn't ever seem to put on weight and is extremely skinny apart from quite often having a sticky out belly.

I took her to the doctor today, and said I am absolutely sure there is something wrong with her. She took her weight and height (she is 9th centile for height and just above 2nd for weight) said she was going to ask the HV to send records of her previous measurements. Obviously being that low isn't always an issue in itself, but she wants to see if she has dropped centiles. She eats alot, and the things she eats would definitely make me put on weight so she has no reason to not gain.

I told her I wanted her tested for celiac, and she absolutely agreed that we should get bloodwork done and see whats going on. She has to go to the hospital for the blood test as they don't do them on little ones (especially those that have never had one before) so it's just a waiting game now.

Has anyone been through similar? Just beside myself with worry as it's awful seeing her the way she is. She is not the same child as she used to be at all.

 

[eegor]

Yes, me.

DS is now 13, we have been going through issues since he was weaned (30mths old) which coincided with an ear infection and his first ever dose of antibiotics.

His bloods came back + for coeliac markers and other allergies, but not specified.

He has had 2 scopes so far - 3yo and 9yo - both clear for coeliacs, but was found to have pretty intense esophagitis at his 3yo scope - he's had silent reflux since a newborn, now classified as GORD due to his age. After his 9yo scope the gastro paed's diagnosis was IBS. Basically, the diagnosis when they had no idea what's wrong. He's due for another scope at 15yo if he still has issues... He's not looking forward to having one as a big kid.

Lactose is an issue, and he has a gluten intolerance - although I feel gluten is getting better. Certain foods are an issue, but I don't know why. Cacao is ok, but not cocoa. 2x bananas a week MAX. Fats and oils also seem to be an issue. And tonnes more foods.

We alternate between constipation and diarrhea (sp?). It's a constant trial and error with foods.

Unfortunately for us, the specialised allergy clinic only takes anaphylactic patients, so we can't get in depth allergy testing to try to find the ore of his issues there.

If you Dr does organise a scope to have a look-see inside your DD's digestive system, she has to be on a full normal diet for a few weeks beforehand to make sure the scope does pick up anything for coeliacs.

 

[Rainbow82]

My DS is coeliac and was diagnosed at 13 months, before diagnosis he was having horrendous diarrhoea ten plus times a day, no energy, refusing foods that were high in gluten and stomach pains. He’s three and a half now and if he eats something with gluten he might get diarrhoea or constipation, stomach pains, and feels sick. His blood tests only showed borderline positive but they diagnosed on that basis due to his age and that he had been refusing most high gluten foods. They should also check for any deficiencies when they do a blood test. Are they referring her to a paediatrician? If so once you get the appointment our HV was fantastic at getting it brought forward by contacting the paediatrician.

 

[Natsku]

Maria was diagnosed with coeliac disease when she was 4.5. She had on and off belly pains for a long time and was always on the small side (but since diagnosis and going on a gluten-free diet she has grown and is now average height and weight). They did a blood test which indicated coeliac disease, then a gastroscopy for confirmation (which went much better than I expected, they put children to sleep for it so it was fine, just a bit of a sore throat when she woke up). Make sure you keep her on a normal diet with gluten (at least one portion of bread or pasta or other gluten containing food a day) until all testing has been done so you don't get a false result

 

[_Meep_]

eegor, sorry if this is something you have tried, but has your son ever been on a probiotic? A dose of antibiotics in some children can really wipe out ALL the bacteria in their body (and gut), good and bad, especially as babies. Babies who have had to be on antibiotics often suffer with horrible reflux when they are small. I know your son is older now, but if he hasn't had one before, it would definitely be worth trying a decent probiotic to see if that can put back whatever it is he might be missing.