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ytt

small bowel inflammation endoscopy

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ytt

Hi all

My DD 17 had an endoscopy this afternoon, doctor came briefly out to tell me that her small bowel had a lot of inflammation which is consistent with her symptoms - anything from extensive constipation, explosive diarrhoea, diarrhoea with constipation,  vomiting after meals when fully constipated, pain and diarrhoea after drinking milk, extreme pain, pain in stomach... gee I'm sure there is more. So much we put down to her mental health (vomiting diarrhoea) and when her mental health got better symptoms didn't plus they have got worse when her mental health has got worse.

I asked for a blood test for celiac which showed numbers in the 150 (can't remember the name of the test) when it should be under 15. After 6 week gluten free diet (Covid so no endoscopy going on in the foreseeable future) the marker went down to 48. Saw a gastro who quickly booked in for an endoscopy (just 6 weeks eating gluten again).

Gastro came out after op saying there was quite a lot of inflammation in her small bowel and she took biopsies for celiac and other things. Then she said it will take 2 weeks to get results.

So does anyone know what this all means. I've got two weeks to wait and right now DD is not in a good mental health state, I think she is not absorbing meds properly. I'm desperate for answers and now have to wait two more weeks. Google is no good to me and I suck at it. I kind of was hoping doctor would see celiac damage and say it was possibly celiac because on Friday we are meeting with her child psychiatrist and psychologist and handing her over to the youth team so I was hoping to say the endoscopy showed X that could attribute to her decline in mental health.

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Kabu84

I’m sorry you and your DD are going through this! 

Just wanting to share my experience with you as it’s a similar type of issue. I was recently diagnosed with Crohn’s disease at 36 (inflammation patches all through my bowel) and it is an awful thing, like having gastro and never feeling better. I had episodes of diarrhoea and then constipation, extreme bloating and waking up in the night with stomach cramps. The fatigue was extreme. I also started losing some hair. My iron was really low and I wasn’t absorbing many nutrients from my food so I was lacking lots of things.
I noticed my mental health is really low when I was getting flare-ups. Like it is more than just ‘feeling crap because I’m sick’ kind of low, it is like there is a connection between my stomach and brain, and when my stomach issues are inflamed then my emotions became inflamed/depleted, if that makes sense. When I am sick it is like I see the world completely different and it is a very dark place. It actually amazes me how much it affects my brain.

I have had to really learn to look after myself properly- self-care is no longer a luxury for me, it is a must. If I start to get stressed and run-down or tired then my gut issues start playing up and if I don’t stop I get a flare up. 


I have to cook most of my meals at home. I can’t have dairy anymore. If I am tired and need an 11 hour sleep then I just have to do it or otherwise I risk getting sick.

Fortunately I’ve learnt to manage this illness and am now living my life almost as normal - working/parenting, hobbies, holidays etc but it has taken 12 months of trial and error, breakdowns, lots of tears and a big lifestyle change for our whole family. I can now finally say I feel better than what I have done for years (I think I had this for years but just thought I had a sensitive stomach!).


I wish your DD lots of luck and fingers crossed she gets a clear diagnosis and a plan for recovery.

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ytt

Thank you so much for your reply, it was really good but also scares me because due to DD' issues and her age she is not looking after herself. She can't regulate herself but if a doctor said she can't eat gluten I'm pretty sure she would follow this but if I said she was intollerat she would go against me (joys of mental health issues).

To be honest I'm worried

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FeralZombieMum

What were her iron levels like?

I am kind of hoping her results are positive for coeliac disease - as that could be the cause behind some of her issues - and is easily treatable with a strict gluten free diet.

 

If she's coeliac - then her body hasn't been absorbing enough vitamins and minerals - a deficiency can be cause mental health issues.

 

I'd put her on a gluten free diet asap  - but keep it clean - ie avoid overly processed gf foods as they can be full of chemicals for flavour - eg flavour enhancers on rice biscuits (eg fantastic brand is not good! https://fantasticsnacks.com.au/products/original-rice-crackers/)

If she is coeliac - her gp will refer her to a dietician for guidance on what to eat.

Good luck!

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ytt

Her iron levels are pretty good - probably because we have haemochromatosis in our family. Even as carriers we have high iron, although saying this DD has had very low levels in the past.

On top of the amazingness of all this she has an eating disorder, in 2 years she has put on 20kg... yes she was very very underweight now not so plus puberty.

Right now DD has no self care and is at a point of actually self sabotaging any care. 

DH is doing a keto diet and so every meal is cooked from scratch and is gluten free for him (I love cooking) but DD is not so happy with this and is craving junk food and has a horrible coke addiction (we have the gluten option ie pasta, pizza base, wraps and bread).

DD sees that she needs to change her diet but also sees that she does not deserve to look after herself and become well - it's a catch 22 and to be honest as much as I've supported her the last 4-5 years it gets harder and harder to support her :(

thanks for the replies

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Prancer is coming

My DD (now 13) has coeliacs disease.  Diagnosed about 6 years ago.  She had high numbers in the test you did too, over 100.  And her iron levels were really low - pretty much non existent.  After the endoscopy we were told the scope showed flattening of her vili and we were told to go gf straight away.  She had a GF meal in recovery.  So whilst it took a few weeks to get the biopsy back, we were told it should be reasonably obvious from the scope.

 

I remember the pain from the blood test and the scope where she needed to be eating gluten but was so sick and in so much pain - so horrible.  Hoping you get answers soon.

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SplashingRainbows

It’s not always obvious from the scope. Certainly wasn’t for my child and gastro said as much. 
 

That said, there’s not likely to be much harm decreasing gluten in her diet now she’s had the scope. 
 

when my child was diagnosed around age 7 (so quite possibly similar levels of cooperation lol) we changed one meal at a time. 
 

we started with breakfast as dinner was already substantially GF (I’m coeliac too). He spent the first month eating a GF coco pop type cereal.  It didn’t last forever. 
 

after a week of GF breakfast we moved to GF lunch. 
 

It does take some time for the body to heal. 2-3 months of less than optimal but GF food to allow time to heal is better than food making them sick IMO. 
 

I found as they got better they were more receptive to more nutritious foods and we swapped in cornflakes and GF weetbix for breakfasts including sometimes eggs on toast. 

1.5 years down the track he’s now quite a good eater.

 

i know you’ve got far more challenges than us  I guess I’m just encouraging you that little steps on this one are still wins  even if they feel like they’re sideways.

 

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ytt

Thank you for your experiences. The doctor office rang and said they had to postpone the appointment for another week. I nearly cried, I know it's not the receptionist fault but I'm hanging for the results to fix her mind/brain :( When I said I was really hoping to get the results as it's important and if I could see her in another room (only operates out of our semi rural GP once a week) the receptionist said that if it was urgent the doctor would ring... A celiac diagnosis isn't urgent, infact any diagnosis that DD could have isn't urgent as such but the rapid deterioration of DD's mental health is urgent to us :( 

We are introducing new psych teams and with this going on it's getting a bit crazy here. Lots of time off for appointments and trying to get DD through this hurdle.

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SplashingRainbows

Email the doctor/rooms and state

 

urgent response required due to deteriorating mental health then ask for the results in your email. Or better yet get another doctor (eg psychiatrist) to call the gastro. They tend to take calls from other doctors particularly specialists. 
 

I was certainly afforded better care by our private specialist for my two kids whose cases were much less complicated. 

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ytt

Last two days I've been speaking to the GP for MH tests and keep forgetting to ask about the results. I'll be in there tomorrow as DD needs bloods and ECG so I will ask the nurse if she can look up her file and see if there is anything from the gastro on file. DD was out and had a very very large accident where DH had to take her new clothes :( she was mortified. She has had a few small accidents at home but this was a tsunami that she couldn't stop. Poor kid , at 17 :( 

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