Coeliac and Crohn's: what were your symptoms?

[OneSmallPieceOfCheese]

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.

Both my kids have Crohn’s. DD main symptom has always been tummy pain. Ds more normal symptom as had blood in poo. Are they doing a colonoscopy as well as Crohn’s can be in large intestine. Have they done a faecal calprotectin test as that can be useful and less invasive. Glad that they are taking it seriously as tummy pain can be so easily dismissed.

Hi @Zebee thanks for your reply. That's really interesting that your daughter's main symptom is tummy pain, when I've looked at the list of symptoms it always seems to be low on the list. I keep waiting for them to conclude its 'just' anxiety, but they keep trying to find a medical cause, thank goodness. Yes we had a normal calprotectin test a few years ago, repeated this week and awaiting results. I asked about whether she should have a colonoscopy, but I guess that will be decided on the results of the calprotectin test.

My symptoms in the months before diagnosis were constant nausea and stomach pain, multiple mouth ulcers, heartburn and loose stools. I also felt incredibly faint/lightheaded probably due to severe anaemia. I was diagnosed with Crohn's disease after a colonoscopy. I'd previously questioned coeliac disease with my GP due to mouth ulcers.

Mine was as above for a couple of months minus lightheaded and then the diarrhoea started with a vengeance, mostly all night. It was months before my Crohns diagnosis as I was told it was stress related etc although I had lost 3 stones in weight (I was a 25year old adult) I went private and it was diagnosed almost immediately and had surgery that week.
My son messaged me when he was a late teenager to say he had just been to his doctor to tell him that he had Crohns and Dr asked why - I have my mothers symptoms and he was right and was also admitted for surgery almost immediately. I have been fine with it and not affected me too much except limiting some foods but my son has suffered quite badly with it at different times.
Crohns and Colitis UK has lots of info online

I’ve got both and the symptoms for both are pretty much the same. With coeliac disease the added benefit of vomiting and foul foaming stools.

Thanks for the replies everyone. I think from these replies that Crohn's is less likely than coeliac. But of course it might turn out to be neither.

@Peterpieper please can I ask how you got the diagnosis for both? What tests/procedures did you need? Thanks

The main symptom I remember was utter exhaustion, like first trimester and newborn baby rolled up into one miserable package, I’d be falling asleep at work, caring for my little kids etc. I was also breathless all the time from barely any movement, and would sometimes be crawling instead of walking. No issues with stools or anything, mainly just those two symptoms.

I was lucky and had an excellent GP who really went to town on the blood tests and tested me for a whole bunch of weird and wonderful things. During the testing process we found I had fatty liver (non alcohol one!) and then she called to say it looked like it might be coeliacs disease. I then had a gastro thingy magiggy and a biopsy done and it was confirmed. From start to finish it took about 3-4 months to be diagnosed officially, but once the biopsy was done I went gf and was feeling better, apart from having some birthday cake on one day after which my symptoms returned with a vengeance so I was fairly confident that I had it before it was official.

I had ulcerative colitis which can be a precursor to these (and other) conditions, diagnosed by a colonoscopy. Mine is in complete remission (3yrs) after significantly changing what I eat. The last calprotectin test showed such minimal levels of inflammation the consultant signed me off. They had wanted me to take anti inflammatory medication for the rest of my life, but I asked to try changing my diet first. Hope your daughters situation improves

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.

i was diagnosed first with coeliac diseases at a time when gluten intolerance wasn’t identified in adults. . Massive weight loss, ulcers, vomiting I had a endoscopy to confirm the diagnosis. My bread came in tins from the chemist, and supermarkets didn’t have a gluten free aisle. So sticking to a GF diet 30 years ago was hard. But I didn’t ever knowingly eat gluten .
when I got the symptoms of stomach pain , ulcers fatigue , it was put down to not having a totally GF diet and accidentally eating the wrong thing. I knew that I was sticking to the diet, but put it down to poor food preparation by others , for example a friend putting soy sauce in a salad dressing.
at first the symptoms weren’t too bad
about 10 years later I began to get the same symptoms as coeliac disease really bad ly. Stomach aches like labour pains, Constantly needing the loo, like about twice sun hour, ulcer's, it was horrendous.
The consultant kept thinking about crohnes but having the two things together is extremely unusual, in his career he’d only seen four patients with both, so he kept looking for different causes, eventually a colonoscopy showed up crohnes . I was number 5..
so basically an endoscopy for coeliac disease and a colonoscopy for crohnes.
ulcerative colitis only affects one part of bowl
Crohnes disease the ulcers can be all over your body, mouth, eyes ,legs intestines etc
coeliac disease the villi in the jujenum are flattened, which means they can’t do their job of absorbing food.

@Londonnight thank you for replying, that's a real eye opener as that sounds incredibly similar to my daughter- even the breath thing! Her skin is fine but she's always pale, even in summer. With dark circles.

Diagnosed with coeliac disease 2 years ago via an endoscopy.
Symptoms were acid reflux, a skin condition similar to eczema, upset stomach, constipation and loss of appetite.
Going GF has sorted all of this.

Sorry to hijack the thread but can i ask @renomeno what is the diet you are on? My dh has uc symptoms were loose stools particularly at night with ood and weight loss, very high calprotectin. My dh has been on so many drugs now on another immune suppressor.
My 16 year old dd now has similar signs so is doing a calprotectin test.

I know diet upf is bad but, I have never really seen much evidence of diet resolving IBD. I am very interested in the nutrition behind health

My 10 year old was diagnosed with Coeliacs 6 months ago. She started with very vague, widespread symptoms like dizziness, muscle and joint pain, headaches and tummy aches, pallor, dark under eye circles and lethargy. This went on for a year or two and was put down to anxiety (by myself -this started during lockdown and in the midst of a few family crises) and growing pains and vit d deficiency (by the gp). I pushed to see a rheumatologist who did blood tests which were mildly positive for coeliacs.

While we were awaiting endoscopy she started vomiting. She did not stop vomiting for the entire 5 months we were waiting. It was awful.

In summary, there was a slow build up of vague symptoms and then a quick escalation where there was clearly something very wrong!

Interestingly, despite the mild blood results, the endoscopy showed total destruction of intestinal villli.

The endoscopy itself was quick and painless btw.

@Londonnight please can I ask whether your son had a calprotectin test? I don't know whether to push for a colonoscopy as well as an endoscopy for her.

@Icannoteven thanks for this, it sounds very similar to some of my daughter's symptoms. Without a diagnosis the suggestion of anxiety being the problem still keeps lurking. Thankfully she isn't vomiting, that sounds like it was absolutely awful for your daughter.

Coeliac diagnosed as an adult. Constant,vile smelling diarrhoea, stomach pain. Would go to dr, he’d diagnose a stomach bug, starve for a day, then light diet of toast. So on and on. Massive weight loss, hair stopped growing, nails were falling out, periods stopped Total exhaustion. Anaemic. I too had bread in a tin and eating out was a nightmare.

Have crohns, short bowel syndrome and dumping syndrome. Had numerous ops and a colostomy. Was diagnosed late teens but had symptoms all through childhood of;
Ulcers from mouth downwards
Really sore eyes
Disgusting poo. Really awful. Made people sick (smell)
Would have bouts of severe stomach pain where I was hospitalised.
Inability to eat for long periods
Constant sickness.
Exhaustion.

From what I have read though the vast majority of people don't need surgery and can be managed. I have never been in remission unfortunately and go to a specialist bowel hospital.

Does it affect your skin in any way? I know about the rash that coeliacs get, but how about things like chapped lips and dandruff?

@Allthecatseverywhereallatonce I cut out all wheat and gluten, upped my fermented foods (homemade kefir every day, plus kimchi, sauerkraut etc) and cut sugar/carbs. It took a while to adjust but once my symptoms improved I didn't miss all the things I had cut out. Basically lots of good fats, protein and green veg...

Now I very occasionally I have wheat and am a bit more relaxed about carbs (the odd roast potato etc) but the benefits have been so significant I'm happy to stick with it indefinitely

@renomeno I probably eat the opposite of that diet. Low residue....
And vitamin injections regularly.

@OneSmallPieceOfCheese
I can't remember if my son had a calprotectin test before his diagnosis -- this was 14 years ago. He has had many since when he has been flaring.

He was also diagnosed with OFG [ Orofacial granulomatosis ) which is crohns related. He had massive sores in and around his mouth [ like very large cold sores ] His were weeping badly too ---- they were really bad as the GP were dismissive of symptoms so he just got worse.
He also had large ulcers inside his mouth and cheeks [ also found during the colonoscopy through his digestive tract ]

He also got, and still does at times, a type of psoriasis on his head, similar to dandruff. He also had it on his eye lashes at one point and lost all those.

I was diagnosed more than 25 years ago so my memory is hazy, but I recall having abdominal pain, diarrhoea, weight loss and tiredness. I also remember GERD- type pain in my chest. I was diagnosed by MRI scan as I was a teenager and very reluctant to have a colonoscopy.

My DD had diarrhea for months. It wasn't just diarrhea, you could literally see the chewed up bits of apple peel etc still. She also lost energy, got breathless, her hair went brittle and dull and she stopped growing. Then she had a constant mild fever (around 37.5). Then she started spiking fevers of 39-40 for 24 hours. Then she started randomly vomiting every few days. She had very little stomach pain, though that is a common symptom for others. She barely wanted to eat anything except wotsits and mashed potato. And every time she did eat, she would have to run to the toilet after about 2 minutes.
She was very very thin. She also had one episode of agonizing rectal pain.

I have about 6 family members with coeliac and we hoped it was that, but the consultant more or less ruled it out before colonoscopy really, based on her blood results. Her t levels were fine but her platelets were high, her ESR was elevated, and her vitamin levels low, plus a CRP of 17. He told us her bloods were very typical of IBD, probably Crohn's, there and then.

My sister's coeliac presented as very severe anemia, ulcers in the mouth, and swollen hands and feet (related to the anemia). She had intermittent diarrhea and constipation.