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Anyone had High BS or Ketones after Coeliac Biopsy?

acox75

Well-Known Member
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63
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West Midlands
Type of diabetes
Parent
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Pump
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Idiotic people, know it alls who know nothing, lazy home educators!
Hi, My 3 year old had an endoscopic biopsy to confirm Coeliac Disease yesterday but since then, his bloods have been a little high and he has high ketones present. Has anyone been affected in a similar way after a biopsy? His DN said it shouldn't make a difference so maybe a coincidence? We have treated him as normal to reduce both numbers.
 
It may be that the procedure caused him stress? Stress can play havoc with blood sugar numbers and some people report higher numbers and others find lower ones.

I will bump your post up to see if anyone can identify. I do hope he is back to normal today.
 
Thank you for your reply. He's still a bit high today but that makes sense, it could be the stress of it all. Will wait to see if anyone else has experienced this.
 
As CC says stress would possibly be the culprit. After he is only a little man and it must have been very strange and scary for him. Hope he soon perks up.
 
Thank you. His BS is still a little high but ketones have come down. He has been his usual playful self since yesterday but then he is a very happy boy. Been on a lot of temporary basals which seem to be working so I'll keep those going!
 
Sorry to hear coeliac confirmed in your little chap.
Some ops and stress do cause this.
Keep an eye on the ketones and make sure they are lowering.... If not do contact nhs professionals.
Glad to hear he is a happy chappy today though....
 
Thank you donnellysdogs. Yes it's a shame about the coeliac and I know everything has to be changed but it's manageable. My husband and I will also be going gluten free so we can support him properly.
I'm checking ketones every 2 hours and setting temporary basals to reduce them which seems to be working so I'll continue with that. Called DN on Friday but will call again if he's still high come Monday.
Yes he is a happy boy. Been playing hard all day!
 
Ah ok didn't read the coeliac was confirmed. This will in all probability cause some blood sugar problems as your son if now gluten free will be absorbing food better. This will mean a gradual change in basal and bolus needs. (been there and worn the Tshirt)
 
@acox75... Its tough as parents of a diabetic and for you both to go gluten free us fantastic too.

I am not coeliac but have slow colonic transit and avoid all processed foods pretty much. It means the world to me that my hubby does the same.

@iHs has good knowledge if coeliac. Hugely knowledgeable on T1 too.

It is manageable but not easy. Especially when there will be school, parties etc.

There are some fantastic foods to eat though...

Glad temporary basals seem to be working. So glad he has been playing hard all day... Sort of a relief in a way as when children are feeling bad they don't play hard!!

So sorry though that you've joined the T1 club as a family. I really do wish above all else that children could not be "D". It saddens me to read of another child joining the D club.

Are their grandparents and close relatives that understand the implications of wrong foods? Its hard on parents to ensure that relatives and friends (schools) etc understand and don't think "oh a little bit of that won't do any harm" or go the ither way making your son feel "different" with food and eating....
 
CarbsRok - biopsy was to confirm coeliac as blood results were high. Biopsy results back in a week or so but very likely he is coeliac. Been told to make no diet changes until results are back and we need with dietician, although I have done plenty of research of what we can/can't eat. Sorry for not explaining in earlier posts!
 
I don't think anyone fully understands anything unless they're in the same situation. We understand that once gluten free, the tiniest amount of anything could cause problems for weeks but some think a little won't hurt - erm, yes it will!!! I will be taking my own supplies on family visits as I wouldn't risk my son getting ill! Same with school as when he starts nursery in September, the DNs will go in to educate staff about T1 and coeliac so fingers crossed, he won't be glutened!!!
 
Agree - manageable but not easy. And T1 and Coeliac - twice as hard as I'll have to re learn carbs for non wheat foods! Oh well, I've done it before so I'm sure I'll do it again! Investing in a breadmaker too which should be fun!
 
I was tested by blood for coeliac years ago and had a biopsy... It came back negative but
Was then diagnosed with Pernicious Anaemia instead (which has also been undiagnosed since.

Like you I read up and also at the time went and tried gluten free shop foods...then the results came back negative.

Now ( I think its about 10 years on) I do have complete intolerance to anything that is processed or pastas, rice, bread, cakes etc.

My consultant wanted to test me again for coeluac but as I don't eat gluten products daily etc whats the point in eating them to just prove a test (or not again). I know that weeks ago I went out with hubby and had a panini and within 90
Mins I had a lump the size of a tennis ball in my stomach. It was a one off and there is no way I would intentionally eat bread and gluten to have more tests done. Its very rarely ate (once a year at most) so I don't miss it at all.

Agree with actually waiting for biopsy results... (I am an adult though) as they may come back negative as mine did years ago.

A worrying time though for you as parents.....
 
Bread makers are good for gluten free bread making!! My friend does it. She say its much nicer than the stuff on the shelves in shops.

Yes you would have to ensure that gluten free knives and cutting/chopping boards were used.

Glad your DN getting involved with educating school ref your sons needs...

Hope if you live in UK that you are also claiming DLA for your son.
 
That sounds awful! Don't blame you for not wanting to eat wheat!

My son's consultant said it was very likely he has coeliac because his blood results were high but like your case, it's not definite. Think it's I best to wait for results as another week or so won't make any difference. We just want to know so I can stop giving him foods that are no good for him. I cook a lot from scratch anyway so that won't be different, just different ingredients.

Glad to hear a bread maker is worth having! We are also planning on getting a new toaster, cutlery, utensils, pans etc... Chopping board is glass, is that ok?

DNs train staff at school and put a care plan in place. I don't work and the school is actually a 2 min drive away so I can go in if I'm needed if they're stuck!

Yes we're in the UK and we get DLA.
 
donnellysdogs said:
Bread makers are good for gluten free bread making!! My friend does it. She say its much nicer than the stuff on the shelves in shops.
Click to expand...
Bread can be had on prescription, I haven't found one that is lower in carbs or nice to eat though
There's a local baker to me that makes bread rolls that are GF and taste just like real bread. The Genius triple seeded loaf is very yummy as well (if you like seeds)
Morrisons, Tesco and Sainsburys are the best shop for GF goods.

No1 rule though is check and recheck all food labels.
 
Hi everyone, just wanted to thank you all for your replies. My son's BM and Ketones all went back to normal around Monday afternoon I am thinking you were right in saying it was the stress of the biopsy as he's had a good week. Will update once results come back. I have today bought a gluten free pizza for his dinner tomorrow just to see what it's like! I am planning on making my own once his results are back and we're fully gluten free!
 
Hi Everyone,

Got my sons biopsy results today - and they were negative. We're pleased he's not Coeliac but will be looking for some answers as to why his blood results were high. Awaiting call from his DN once she has spoken to his Endo! Should be tomorrow.
 
Really pleased your little man is clear
 
Thank you. Just not sure what's going on until we hear further. So frustrating!
 
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