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Original poster

Coeliac and Crohn's: what were your symptoms?

34 replies

OneSmallPieceOfCheese · 12/12/2023 16:47

Hello all
My daughter is 10 and is awaiting a endoscopy to find out if she has coeliac or Crohn's (or neither... or something else). I like to be as prepared as possible so I'm trying to research both. So my question is, if you have either condition, what symptoms did you have? Especially the less documented ones. Her main symptom is constant pain behind her belly button.
Thanks in advance... I'm hoping to get my head around the possible outcome so I'm not blindsided by it, whatever it is.

OP posts:
MumofCrohnie · 18/12/2023 08:49

My DD did not have calprotectin test before diagnosis - though her GP might have done this if he had thought of it.

Dynamoat · 18/12/2023 08:56

For those with celiac disease, did you all have positive blood tests before further investigation? My DC has had 2 negative tests but has severe anemia that wont resolve, growth issues and constant mouth ulcers.

MumofCrohnie · 18/12/2023 08:56

Image of diarrhea I shared with doctor. Warning, do not uncover if you don't want to see poo.

MissSmiley · 18/12/2023 11:30

Dynamoat · 18/12/2023 08:56

For those with celiac disease, did you all have positive blood tests before further investigation? My DC has had 2 negative tests but has severe anemia that wont resolve, growth issues and constant mouth ulcers.

I had negative antibody test for 15 years despite all the symptoms, when one of my twins had tummy issues and stopped growing age 5 I had a genetic test and then an endoscopy, positive for DQ2 and had flattened villi in the duodenum. Diagnosed sero negative coeliac disease.

My son had negative antibody test, normal endoscopy but two copies of the coeliac gene so was told to go GF and still is. He started growing again and put weight on and the stomach pain that he thought was normal stopped.

Cosycover · 18/12/2023 11:33

My brother has crohns and our family got alot of help from a charity here in Scotland. Not sure where you are based but it is worth reaching out to charities.

We used to attend family days with him where he got to meet other kids going through the same thing and it really helped him. He's an adult now but it was truly invaluable. If anyone wants any more info I can DM you.

Peterpieper · 18/12/2023 14:30

Dynamoat · 18/12/2023 08:56

For those with celiac disease, did you all have positive blood tests before further investigation? My DC has had 2 negative tests but has severe anemia that wont resolve, growth issues and constant mouth ulcers.

I had a negative blood test for coeliac disease, but by the time I had the blood test , I was on an exclusion diet of mashed potatoes.

User1343 · 18/12/2023 14:33

Dynamoat · 18/12/2023 08:56

For those with celiac disease, did you all have positive blood tests before further investigation? My DC has had 2 negative tests but has severe anemia that wont resolve, growth issues and constant mouth ulcers.

I had a positive test before biopsy to confirm

Original poster
OneSmallPieceOfCheese · 19/12/2023 16:22

Thanks so much for the replies everyone. I am really grateful for all the information, I'm piecing it together in my head like a jigsaw puzzle. I am struggling with the waiting tbh, even though we've been waiting for years to get help, suddenly even a few weeks is too long. I think that has a lot to do with my anxiety this time round. I don't know anyone else in real life who knows much about it so I don't have anyone to confide in.

OP posts:
Floralbiscuit · 20/02/2024 11:25

Londonnight · 14/12/2023 07:59

My son was diagnosed with crohns when he was 8 [ now an adult ]. He had symptoms for around two years before this. His main symptoms were tummy pain and constipation [ unusual for crohns], lack of energy, absolutely foul breath! His skin was really bad too.
He had a colonoscopy and endoscopy where they also took biopsies. He had major inflammation down his digestive tract and his large bowel. He was put onto meds straight away after the scopes as his was really severe.

I hope that you get answers soon as the waiting sometimes is worse than actually knowing what your are dealing with.

@Londonnight how is your son doing now? My son is 8 and has been back and forth with gastro and we were told not to worry. Oral consultant yesterday said she thinks he may have Crohn's based on the appearance of his mouth ulcers. I'm very worried. Waiting for blood test results and then going to go back to gastro for the umpteenth time.

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