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Autoimmune disease

Bowel problem - potential coeliac

10 replies

Span88 · 25/04/2021 08:05

Hi everyone,
I was looking for some advice from anyone who has similar symptoms to me or been diagnosed with coeliac disease.
Back in October 2020 I had a laparoscopy and dye operation as we were struggling to conceive after there years of trying. (Before this operation I was fine with regards to stomach/bowel troubles)
First few days I was constipated after the op then after that I had diarrhoea for months. Several stool and blood samples later the GP tells me my stool sample shows inflammation and my blood test show I coeliac but would need a biopsy to confirm as I was tested for is 3 years back and the results were negative.
It’s been three months since I was told I could have coeliac and this last week has been the worst I have felt. Soo tired, light headed and dizzy, pains in my lower back and stomach and 3/4 trips to the toilet before 9am. It’s really got me down this last week. Are these normal symptoms for coeliac?
Any help or advice would be hugely appropriate x

OP posts:
Youdontknowwhatyoureonabout · 25/04/2021 08:31

Celiac disease can impair nutrient absorption and may lead to iron-deficiency anemia, a condition caused by a lack of red blood cells in the body ( 17 ). Symptoms of iron-deficiency anemia include fatigue, weakness, chest pain, headaches and dizziness

Diarrhoea is the most common symptom of coeliac disease. It's caused by the body not being able to fully absorb nutrients (malabsorption, see below). Malabsorption can also lead to stools (poo) containing abnormally high levels of fat (steatorrhoea). This can make them foul smelling, greasy and frothy.
www.nhs.uk/conditions/coeliac-disease/symptoms/

Have they told you to keep eating gluten until biopsy? I hope you get a date soon, sounds miserable.

Corri88 · 25/04/2021 09:16

No they haven’t told me to keep eating gluten, they told me to stop which I have and things havnt settled.
I hope they settle soon and due to covid the biopsy could be months away yet.
Maybe the iron deficiency is the reason I have been so dizzy and light headed. Thank you

PainAgain · 01/05/2021 06:59

Hi there. If you were told to stop eating gluten before a diagnosis, you're being treated by someone who doesn't know about the disease and need a different doctor. That said, resuming eating gluten made my symptoms much worse so be careful to reintroduce slowly.

I would push for more attention, including a full set of results to look at nutritional deficiencies. As you may not be absorbing them through your digestive system, injections may be the way to go for now. Good luck to you.

GlutenFreeGingerCake · 01/05/2021 07:06

So you were fine before the laparoscopy and this all started up after? And it is not clearing up with a gluten free diet? It does sound like they should consider other possible causes.

CovidCorvid · 01/05/2021 07:11

How long since you stopped eating gluten , three months?

Because once you stop your villi should heal and malabsorption stops being an issue. Though obviously if it’s been a long term chronic thing you may need supplements to recover from the anemia. But symptoms should still be improving not getting worse? And really the stomach pains should have stopped.

I’m just wondering if you’ve got something else going on instead of coeliac or possibly alongside coeliac....IBD/Crohn’s? You really need an endoscopy and possibly a colonoscopy as well.

Previous poster is correct in that you need to still be eating gluten prior to your endoscopy or if coeliac you will get a false negative. Once you have a date you can eat gluten for six weeks beforehand, but this relies on you having six weeks notice of the procedure. The doctor is shit for not explaining this because you’d probably have been better off continuing to eat gluten.....when you reintroduce it to a healed body the symptoms will be worse.

The other possibility is that you think you’ve gone gluten free but actually you’re still consuming it. How strict are you being? Are you thinking about cross contamination, so different toaster, different butter, jam, etc. Different bread knife, wiping down surfaces carefully, different bread board?

Dd had similar symptoms to you and in fact nearly died while waiting for her endoscopy. She kept collapsing and we’d just made the decision to not bother with the endoscopy and proper diagnosis as it was making her so ill. She kept collapsing, vomiting daily. Three days later we couldn’t wake her up properly one morning, she was semi conscious. She was admitted to hospital and they said she was chronically malnourished and days away from death. Funny that I’d rung the GP and the hospital the week before and said I thought she’d be dead before she had the endoscopy and they said I was being dramatic! So yes, it can make you very poorly.

CovidCorvid · 01/05/2021 07:14

Sorry, I completely missed this all started after a lap and dye procedure...makes you wonder if they’ve damaged the bowel during this? Seems a massive coincidence otherwise.

Bostonbullsmumma · 01/05/2021 08:49

Your biopsy results will likely be negative if you have stopped eating gluten already. I was told to keep eating it until I was tested. Very similar symptoms. Dizziness and headaches were the worst and the doctor initially diagnosed panic attacks 🤷🏻‍♀️ I got very poorly before I was diagnosed and it took a long time to feel better- I kept thinking I had something else but eventually I did feel better!! Hang in there xx

Corri88 · 01/05/2021 09:37

Thanks everyone for your responses.
Yup I was completely fine before the lap and dye procedure. Initially I was told IBS and just stress from the procedure but I went back as I knew it wasn’t that.
End of jan I was told coeliac and am still awaiting my endo referral. I have an appointment with the doctor this week.
I also had more bloods taken on Thursday to check iron/Vit D etc.
I just find it weird that it started after the operation, and worry damage was done but the surgeon at the review appointment told me she was no where near my bowel and that it was likely I had an undiagnosed bowel issue 🤨
Fingers crossed I get some answers from these set of bloods and start to feel a bit better soon.
Covidcorvid - cross contamination is a possibility as I don't use separate toaster, butter etc. I will start. Thank you.
After all of this I was told the lap and dye procedure won’t make a difference to having a baby and I would need IVF. I really wish I hadn’t had it done.

choirmumoftwo · 01/05/2021 09:44

The coeliac may be a red herring though. My DD was diagnosed 2 years ago (biopsy confirmed) but was actually being investigated for other things. Once she was found to be coeliac they stopped looking for anything else, then COVID happened.
She's increasingly poorly and we're certain there are other autoimmune issues going on. Seeing GP again soon. So definitely coeliac but that doesn't exclude coexisting problems, which may be the case with you OP.

CovidCorvid · 01/05/2021 16:37

It is possible coeliac I guess but kind of related to the operation. People with coeliac have the gene but doesn't mean that the gene will activate. There is emerging evidence that a trauma, illness, period of stress could activate the gene. So could tie in with an operation.

Yes, if going gf cut out cross contamination. You only need a microscopic crumb to cause damage. But if having an endoscopy you shouldn't be gf until after the procedure.

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