Postpartum celiac onset

[Ouchhh]

Hello!

Sorry if this should be in a different place.

I have another thread on postnatal health about the birth of my baby boy and the health complications I've had as a result.

As well as all of that I've had a fairly unhappy tummy for a few months (currently nearly 4m pp), I've been to the drs had numerous blood tests & ultrasound . Been advised it's probably ibs. Celiac bloods came up as unlikely.

Decided to follow a strict elimination diet 3 weeks ago as I've been in a lot of pain and distress with it. Symptoms greatly improved. Recently added gluten ( crisps contains gluten and a pastry) and had severe diarrhoea (sorry tmi) about 4 hours after & the same horrible gripey pains I was having before.

Could this potentially be a gluten sensitivity or intolerance ? Has anyone else developed this after giving birth? I used to be the pizza and sandwich queen before having my little boy! Never had any issues like this before,

Because of my birth injury and the ongoing complications of that (need further surgery soon) I wouldn't be able to get a colonoscopy at the moment and tbh I know they tell you that you have to eat gluten to get a diagnosis but I can't carry on eating things that give me so much pain. Especially as I have other things going on and I'm looking after a young baby at the same time.

Just reaching out to see if anyone has had a similar experience/ advice .

Thanks xx

Also just realised I've not spelt coeliac correctly 🤦‍♀️😅

I don't personally although coeliac disease runs in my family and DH's. I am pretty sure that this is what happened with his DM and she developed it 30+ years ago after the birth of my sister-in-law. My SIL doesn't have coeliac but does have chrohn's disease and I know she's wondered if there's a link.

Yes, I did although I realised afterwards that I had had some milder symptoms all my life which I had just attributed to digestion issues.

But after DC 2&3 (v close together) the symptoms ramped up massively to the point I was avoiding eating altogether and eventually I did an elimination diet to try to pinpoint the issue.

Unfortunately for me I now can’t tolerate even a tiny amount of gluten, I get a severe reaction with intense pain, pressure, cold sweating, shaking, vomiting and diahhroea (never know how to spell that).

Because of this I cannot be tested for coeliac disease as the test requires a gluten diet for some weeks / months prior and that’s out of the question now.

Given there’s no treatment except elimination of gluten from the diet it doesn’t really matter either way on a day to day, but in terms of understanding the wider impact of coeliac disease I’m a bit stuck not knowing.

Coeliacs can develop later in life. I've been diagnosed since early 20s but my sister didn't have any symptoms until nearly 40. There's a coeliac panel blood test gp can do which is an indicator but confirmed diagnosis needs to be the camera down. I'd speak to gp and if they are doing blood test you're right that you need to eat gluten for a true result however its not loads. Between blood test and camera I was told a slice of bread a day. The only outcome from a diagnosis is a gf diet so maybe have the blood test and then see where you feel with things? If it comes back as positive you could always just eliminate gluten yourself without an 'official' diagnosis but you'd be better talking to Dr in case it's something else. We're pretty sure our eldest is coeliac but he doesn't want the tests so just eats gf.
I was diagnosed with lupus after 3rd pregnancy so I often wonder if there's something about changes in hormones in pregnancy that can kick start dormant conditions

Yes, pregnancy can absolutely trigger the coeliac gene turning 'on', that's what happened to me.

My doctor explained that the coeliac blood and endoscopy tests measure how damaged you are, not whether you are coeliac or not, so it's possible to have coeliac disease and your inflammation test be 'negative' - you've just caught it earlier. He said this is how autoimmune diseases work. You aren't completely healthy and then wake up one morning and suddenly have severe lupus/coeliac/whatever where you didn't the day before, it's a gradual process where you are increasingly damaged and eventually you are damaged enough that the tests are positive. This is why it's common to hear that someone has a negative test, get sicker and then a year later test positive.

I'd hazard a guess that you are lucky enough to have caught the disease 'early' - and four months is early, it takes a while for villi to wear down.

I'm actually in the same situation with my DC. They are negative on inflammation tests, but symptoms that had been going on for a few months all stopped when I stopped them eating gluten. They have the gene and I have coeliac, so it's likely they have it. There's no value in continuing to give them gluten and them getting sicker and sicker, just to get a positive test result at some point. The treatment is the same anyway!

You could have the genetic test to see if it's more likely to be coeliac disease or an intolerance, but again - the treatment is the same either way

Thank you for all your advice everyone ❤️

@mynameiscalypso do you know what your SILs symptoms of crohns was?

@Mamette it's so rubbish there's not another way to test for it, it's really terrible to have to suffer and damage yourself.

@NeverAloneNeverAgain it's crazy how pregnancy can just completely change your body isn't it.

@puffinstealer thank for explaining that the tests just detect the damage, I didn't know that but it makes a lot of sense now . What does a genetic test involve?

Had a really crap couple of days, starting to now doubt it's gluten as I've had a dodgy tummy not long after eating GF fajitas & tomato soup with cheese which are both gf :(

Does anyone know if a food intolerance would present with diarrhoea straight after eating the food you're intolerant to or would it be from something that you ate the day before ? I'm so confused and frustrated. Going for some surgery in a few days too and don't want to have diarrhoea 😫

Going to have to go back to the elimination diet I think

For me, diarrhoea always presents the following day. Never the day of. I have about 18 hours of grace after eating something before the nightmare starts ...

Digestive reactions are also stimulated by the act of eating, so unless it's vomiting/rashes/immediate things like that it's very difficult to isolate the exact cause even if it 'feels' like something you just ate.

Sorry you're having such a rough time, I hope you manage to get to the bottom of it.

The genetic test for coeliac is just a blood test. I don't know how easy it is to get in the U.K., as I'm not there. Presumably you could get it privately.

Thanks so much for your response @puffinstealer !! Really appreciate it . It's so confusing not knowing what to eat & whether it's what ive just had or something I ate the day before :(

Xx

gall bladder
also look up sphyncter of odii dysfunction.

@greenacrylicpaint thanks for info. I've had an ultrasound on my gallbladder, pelvic area, liver etc and all normal xx

Coeliac disease can cause lactose intolerance - so it is possible that the dairy is an additional issue. If that is the case, it should resolve once the damage from the gluten improves.