10 year old with Auto immune thyroid (hashimotos)

[Tiredmum10]

Hello....You probably get alot of this but here I go!
Basically a year ago my daughter was diagnosed with Hashimotos...now on levothyroxine....we thought great symptoms will disappear we know what we are dealing with. Her symptoms are as follows!
Positive faecal calprotectin test
Nausea daily...comes and goes sometimes with headache
Stomach pain comes and goes
Mouth ulcers
Tiredness/pale
Episodes on the toilet,goes to bed fine and is woken with severe abdominal pain then on the toilet for 1hr+ back and forward. Poo then goes from normal to extreme mush...like her body is completely emptying itself. This usually happens monthly...not predictable only that it happens at night. Pain is sever and she is left shaking and sweating afterwards completely drained. She has lost a little weight not massive but is short for her age.
She is due to go to Alderhey children's hospital in a few months..just wondering if you can relate to any symptoms and if there is anything I can do to prepare for appointment. Thank you xxx

 

[crohnsinct]

Yes.

Do you have a value for the the fecal calprotectin test? They usually have a value but I know some offices in Europe use a quick test that just registers positive/negative.

Even if it is positive there are chances it could be something else. Celiac could raise fecal calprotectin although you don't have to have an elevated fc to have celiac. Celiac could produce all the same symptoms you are describing and from what I understand a lot of people with Celiac also have thyroid issues (but that is just second hand inform a friend who has celiac and her daughter does also...both were dx'd with Celiac after the thyroid issues were dx'd).

Elevated fecal cal can also be due to infections, recent stomach bug, high and consistent NSAID use (although I don't exactly buy this one. We have a member here who has daughters on consistent NSAID use and they don't get elevated FCP but the literature says it so I list it). The come and go nature makes me think not likely an infection.

Good thing you are getting her in with a specialist. I hope she isn't too uncomfortable while waiting. Try not to get ahead of yourself until that time.

 

[Tiredmum10]

No value given (I didn't ask) only did that it was raised. Her nan is celiac so she had a blood test that came back negative for it...but from what I can gather you can get negative blood tests and still have it. It's hard when you know something is up yet nobody will listen.she even avoids certain foods that hurt her stomach,apples are a no go as she says she has pain almost straight away...she avoids too much bread and meat. The Nausea means one min she is hungry and the next not interested. I asked the doctor what would be next if the calprotectin came back negative...his response was we just leave it...she will probably grow out of it! She hasn't had her bloods done for a while but at the last check her ferritin was low. Should I be keeping a food diary?so I can go in with something?

 

[crohnsinct]

You are absolutely correct in that blood labs can miss Celiac. The gold standard with celiac AND IBD is scopes.

Definitely keep a food diary and a symptom diary. The last thing you want is to wait for a appointment only to be sent home asking you to do that. You will be ahead of the game at that point! Great idea!