6 year old coeliac with constipation and poor health

[KatieJBS]

Hi , I’m looking for anyone who may have had similar experience. As finding any answers is proving very difficult with the doctors.

My daughter was diagnosed with coeliac a year ago . She had symptoms of lathargy, constipation, hives, spots, anxiety, being snappy and worn out as well as ketotic hypoglycaemia since she was 2. It took a long time for doctors to listen to us and finally think outside the box and test for coeliac .

A couple of months after being diagnosed she seemed to thrive . Then September came around and she has gone more and more down hill . Daily stomach aches which vary in intensity, pale and dark around the eyes again. Tired a lot and energy levels very up and down . She is now dairy free too . We did a private food sensitivity test and it came back with dairy being a problem . She has been off dairy for months now.

She constantly has the feeling to open her bowls and can go around ten times a day. We upped her movicol to try get her to have a few proper bowl movements instead of lots of little ones but not much changed. She finally had a tummy X-ray which showed faecal loading . She underwent the disimpactment regime and is now on 4 sachets a day .

This has not helped her tummy aches or her overall health . She is still white as a sheet and up and down like a Yo yo . Over Xmas her blood sugar levels were low on two occasions. (2.0 and 1.8!!) they have been fine since but no one seems to want to look into this more ?! It was original blamed on the coeliac but she has been gluten free for a year now .

I just want to know if anyone has had similar experiences and what was the outcome . We are so frustrated trying to find some answers for her !

Thank you :-)

I should also add she’s had thyroid tests -all ok
Full blood count- all ok (previous iron and vit D deficiency)

And still going to the toilet around ten times a day .

For quite a few years after my DS had a positive diagnosis I had a feeling something wasn't right. Initially there was a big improvement once we eliminated gluten, but after quite a long time I felt he still had food related issues. For him he continued to have bloating, was still quite pale and often irritable. He had the lactose breath test but it came back fine. Eventually he was tested for fructose malabsorption and that was the problem. We have made the necessary changes to his diet and it has really helped.
My advice would be keep trust your instincts and keep pushing. Try and notice if any days are better/ worse than others and see if you can see any triggers.

Thank you for sharing !!

This was definitely on my list to enquire about . Just to mention we recently paid for a private food sensitivity kit . (Send off some hair for testing) it came back with all dairy being a problem and other things such as garlic and additives . (The list was quite long) however no fruit sensitivities were recognised . I don’t know if this is any indication to whether or not fructose could be a problem . I will def be mentioning this though .

Heartbreaking watching her not being 100% !

Thank you and I’m glad to hear your son is doing better !!

I was diagnosed Coeliac at 21 years old after years and years of being ill - I was actually only tested because my blood sugar kept dropping extremely low too.

I was gluten free for a year when I had a repeat blood test which still showed my antibodies were extremely high and I couldn’t understand why until I was realised I was still sharing a toaster, butter etc with my family so I was being contaminated all the time. Have you made sure she’s not being contaminated any way or getting any hidden gluten/dairy? Some Coeliac’s are very sensitive.

I’ve been gluten free for 10 years now and some days I can still go toilet 10+ times a day.

Her stomach still might be healing as well, it took me about 2 years before I felt better.

There is no evidence that hair testing is accurate at all for food sensitivity or allergy

Thank you . Your right ... think we just felt desperate and thought we would give the test a try . That’s how we eventually got the consultants to test for coeliac.. by doing a private test at home which showed she was positive .

Thank you Vicky, yes we are very strict and she has no gluten whatsoever . She has recently had updated blood tests which show she is now negative for the antibodies to .

That’s interesting about your low sugars , did this resolve as you got older?

Thank you for sharing xx

@KatieJBS that’s good! Maybe it’s just taking time for her stomach to heal - it can take a long time!

I notice now my bloody sugars drop if I get ‘glutened’ but they’re fine most of the time. I just eat little and often to avoid any problems.

Thank you that’s good to know x

Just seems such a shame, she was so well for about 8 months and now she looks like she did pre diagnoses 🥲

@KatieJBS I know it’s hard, must be even harder when it’s your little one it’s happening to

I did get diagnosed with Lupus a few years afterwards.. usually once you get one autoimmune disease you have a higher chance of getting more so might be worth looking into something else that might be going on.

@KatieJBS Also it could be that she’s suffering with refractory Coeliac disease.

“ Some people with coeliac disease do not respond to the gluten free diet or may initially respond to the diet and then start to experience symptoms again. This is called non responsive or refractory coeliac disease. If you have ongoing symptoms, there are specialists who can help.”

www.coeliac.org.uk/information-and-support/coeliac-disease/about-coeliac-disease/refractory-coeliac-disease/

Thank you so much :-)

This to is on my list, I had mentioned it before and it was shrugged off but I will keep going until she is looking and feeling better.

I have been in a similar position. Dc was 5 when diagnosed with coeliac (I'd been pushing for answers since dc was 6 months) .
Initially improved but didn't improve fully and repeat biopsies also showed continued damage.
Was referred to an immunologist 'to rule out other causes' had many repeat gastroscopy /colonoscopy/ct/mris/bloods/genetic testing etc.
Eventually aged 13 was diagnosed with primary immunodeficiency and refractory coeliac disease. Then followed several years of medication regime changes. We actually found the only way to have a 100% health was to be tube fed and eat nothing as well as taking immunosuppressive drugs which wasn't what dc wanted long term, now dc is tube fed 50% along with medication is reasonably stable and bar a few blips is maintaing.
It has been difficult at times especially as when we were looking for a diagnosis refractory coeliac disease wasn't thought to be something a child had.
Ask for a second opinion (in our case the consultant wanted us to), our consultant also consulted with a specialist coeliac doctor (I think in Sheffield) in adult services but is known worldwide for his work with coeliac disease. Keep going its hard but will be worth it, at its worst dc was only in school 50% and were being threatened with fines, dc was falling behind and lost confidence and was suicidal - having passed gcses (with much higher grades than expected) has gone on to six form and doing well health has really effected every part of dc life but as a result is very resilient and much more aware than alot of his friends.

@Maybemay123
I’m so sorry to hear of the hard time your DC and yourself have gone through. It’s so unfair !

Thank you for sharing , I have just come back from seeing the consultant who is still unsure as to what the problem could be. He has suggested a few weeks off any sweet stuff to see if that makes any difference .( he doesn’t think it will) If it does then we can look at the fructose test .

He said he is going to think of any more relevant blood tests and get back in touch . He is also going to order a stool sample. He said although she doesn’t look well her weight and height are not a major concern. I did say they weren’t a concern prior to coeliac diagnoses either.

He said she probably still has ketotic hypoglycaemia and it’s not anything scary to worry about . As I can get her sugars back up and it’s not happening very often . However I have asked them not to forget this still happens when they are considering future tests.

No real answers still unfortunately. And she is still having daily tummy aches and such a lack of energy compared to how she was in the summer 😭

Coeliac UK has one of their Live Chat sessions tomorrow (Friday). I recommend speaking to them for advice.

(I also recommend burning the results of the hair test for intolerance, they're a scam with no scientific basis. There are many, many articles by respected GPs and NHS specialists warning people not to pay them any attention)

Thank you for the heads up that’s really helpful . :-)

I know this is a dead thread but OP if you're still around did you get any answers for your DD? Going through something similar with my ds10. It's breaking my heart.