Diagnosis Frustration Uk

[Maldivesred]

Hi I'm Emma and I'm from the uk. My 4 year old son has suspected coeliac disease, his just dropped under 0.4th percentile for weight, he has anemia, low white cell count, and persistent smelly loose BM. He also has enamel defects in his milk teeth (brown lines and the surface doesn't look quite right) is this common in a child? he also has a persistent low grade fever. His currently waking with night sweats, his so wet his hair is dripping and I have to change his PJs

His bloods came back negative for coeliac but the consultant feels positive that it is coeliac disease so wants to carry out and endoscopy. My frustration is he was originally referred by the gp in February, saw the consultant at the beginning of April, we are still waiting on an appointment for the procedure. I've spoken to secretary and she said its likely to be in August. That's six months after the original referral !!!

I'm wondering if other people within the Uk have had a similar wait for diagnosis of their child.

Im currently speaking to the hospital PALS team.

Also has anyone's child had speech sound delays along side the coeliac ? Is there a link?

thank you

[nvsmom]

I'm so sorry to hear that your son is feeling so poorly.   It sounds like he has something autoimmune going on, and celiac would be a good fit with his growth, anemia, wbc count, loose BM's and enamel defects. I haven't heard much about the low fever in celiacs, but it is certainly common amoung other autoimmune disorders like the rheumatic diseasese or sometimes thyroid problems, so I wouldn't be surprised if it is a symptom with celiacs too.

 

Do you happen to know which blood tests he had? The deaminated gliadin peptide tests (DGP IgA and DGP IgG) are probably the best for early celiac detection and as such, they will pick up celiac disease when other tests miss it.  The tTG IgA and tTG IgG are the most common tests - they are specific to celiac and pretty good. The EMA IgA is similar to the tTG but tends to only be positive once the intestinal damage is quite extensive. The old anti-gliadin antibody tests are probably the least reliable and are being phased out by the newer DGP tests.

 

Anyway, if you don't already have it, it is a good idea to get copies of your blood work to double check (research) them yourself, There is a disturbing number of celiacs around here whose doctors told them their tests were normal when really it was possible - it's quite disappointing. If you are unsure of the tests, post them here and some of the senior members will help you interpret them.

 

If you have to wait 6 month for the procedure, and you are sure you want to have it done (before going gluten-free), I would suggest letting him eat mostly gluten-free for the next few months and then resume gluten for the last month or so prior to testing to re-enforce the intestinal damage.... It is just pathetic that I wrote that last sentence - the medical system can be so awful.

 

Before going gluten-free or gluten lite, you might want to scheck with the doctor's office and see if there is a chance of getting in earlier. If he is biopsied after being gluten-free for a time it is possible the damage will be gone - kids often heal faster than adults. Hopefully they can move him up.  Having to wait about 1/8th of his life for a medical appointment seems completely ridiculous.

 

Honestly, unless you need the diagnosis on paper, I would consider making him gluten-free right away. My three children all had negative blood work but two of then had celiac or non-celiac gluten intolerance (NCGI) symptoms. I put them on a gluten-free diet anyway and their overall health has improved. There are less loose BMs, attention is better, less headaches, less emotional, and they all had a growth spurt about 2 months into the diet. My oldest son has aspergers, and has some behavioral issues but they have improved a great deal; in fact some of the symptoms of his aspergers disappeared. It could all be a coincidence but I really doubt it.

 

Me and my oldest are also dairy free too. Neither of us completely fixed our GI issues until we gave up dairy. After 6 months dairy free, we don't even miss it... well, except icecream season is approaching.  LOL

 

Best wishes to you and your son. Welcome to the board.

[Celiac Mindwarp]

Hi, I am in the UK too.

3 months or more does not seem unusual to wait for an endoscopy. It is really worth calling to see if you can get an earlier appointment, and be clear you would be available to take a cancellation at short notice (if you possibly can).I am pretty shameless when it comes to my kids health, and I would phone once a week for cancellations.

Sometimes if your gp writes to the hospital to express concerns about the long wait, they might move you up the list.

I am not sure I agree with the above post about going gluten light. If you are waiting that long it seems a shame to risk not getting an accurate biopsy. It would also mean you couldn't take advantage of any earlier appointments. Maybe take advice from the paediatric dept you are dealing with.

Good luck

[Deaminated Marcus]

Those are all the classic symptoms.

 

Which blood test did you get done?

 

The doctors love to give the tTG-IgA test but it's not sensitive for kids.

 

Ask for the DGP-IgG blood test.  

Insist on this test. Do not leave till they give you the requisition for it. 

 

He has to be eating gluten to get the test done.

 

It's important to have a diagnosis now as he's at the start of his life.

[Maldivesred]

Dear All,

 

Thank you very much for your replies and advice.  I'm not sure what blood test they carried out to check for coeliac, I didn't realise there were different types until I starting reading the forums, so never thought to ask.  I will  find out.

 

I've got some good news, the consultants secretary has just called and they have managed to slot him into a cancellation next Friday (17 May 2013).  So fingers crossed we will get some answers next week.  

 

I will let you know how we get on

 

Kind regards

 

Emma

[nvsmom]

 

Dear All,

 

Thank you very much for your replies and advice.  I'm not sure what blood test they carried out to check for coeliac, I didn't realise there were different types until I starting reading the forums, so never thought to ask.  I will  find out.

 

I've got some good news, the consultants secretary has just called and they have managed to slot him into a cancellation next Friday (17 May 2013).  So fingers crossed we will get some answers next week.  

 

I will let you know how we get on

 

Kind regards

 

Emma

 

 

Excellent news! Good luck!

[Celiac Mindwarp]

Emma

I am so pleased at your news

Let us know what happens, and consider a gluten-free trial whatever the results

Mw x

[dbygones]

Really pleased for you! I was scrolling down and thinking how badly the system can work sometimes and wondering if you would get anywhere by logging a complaint - very pleased you've got a cancellation!

 

Hope your boy is feeling much better very soon

[GSRB]

So glad to hear you were able to get an earlier appointment. Good luck for Friday