NEW - 7 year old daughter diagnosed but 'not officially' - negligence from NHS

[MTAC]

My daughter had been complaining of stomach paints intermittently for a while now. We had been to the doctors before in which they said it was just general constipation. For a good while its just been something she complained of and we would put it down to maybe its hunger pains because she is fussy with food, growing pains etc. - She was getting nose bleeds quite regularly and doctors just said she should have her nostrils cuarterized at some point (has had them here and there since a baby - but dad had the same when young so didn't question)

Only recently we went to the doctors for tummy pain again and they requested FBC and a coeliac test.  The bloods come back with basically abnormal everything,  lots of lows, high platelets, ferritin, iron level of 2 ug/L  when the range should be 10.3 - 55.8.

I was simply told she was anaemic and to take iron - coeliac result apparently hadn't come back at this stage and no follow up from drs. 

I called a month later to ask for a copy of her blood test results so I could keep them for my own records, the receptionist of the surgery sent them over and included the coeliac testing results ( I had never heard of them coming back with no update etc) 

he results stated - Tissue transglutaminase IgA level (XaJg2) Above range > 250.0 U/mL [0.0 - 15.0]. -  I am STRESSED. I googled a lot and come to terms with maybe they hadn't got in contact because they don't want you to change their diet until further testing had been done? and I was awaiting a paediatric referral. 

I then made a doctors appointment for a separate issue (UTI) and upon attending the surgery the nurse mentioned the results briefly (baring in mind this is the first time I would have been made aware of the results) and said because the levels are so high I need to change her diet immediately. I was sent away with no more information but that. I requested a call from the doctor to discuss the results and they said it will take 6-8 weeks for a call back.

I find a lot of contradicting advice online and in all honestly I don't know what to do. - Don't stop gluten until further testing done, levels being high so I need to stop immediately.

As of late I had cut a lot of processed food/sugars out of our diets and my daughters meals were - 3/4 Weetabix of a morning - cheese crackers for lunch. Who knew I was poisoning her with this food at the time? But ever since I had started on these foods she had'nt complained of a stomach ache once. No other symptoms - she is full of energy, long hair, overall healthy but she is a small frame. I did wonder if she was lacking iron as she had darker undereye but I am also anaemic.

I can't help but think of the worse.  - I have another daughter 15 months younger and have requested her to be tested also as what it states on NHS is recommended - Whether they get back to me will be the next hurdle.

My plan is to remove gluten from our household completely.  Myself, partner and other daughter can eat it if out of the house but nothing to be had at home with it in. (Of course I would not sit in front of my daughter diagnosed and eat something she can't have). Although I'm hoping to test us all just to clarify further.

I don't know where I am going with this, I'm not sure what to do next, is there any further testing I should request or any other things I should be thinking of? At this stage I feel lost with no support and no guidance on what to do now.

 

 

 

 

[trents]

Looks like from your spellings ("coeliac"), expressions ("bloods" for blood tests) and the lack of timely communication and appointment availability that you must be in the UK. It must be very frustrating to have to deal with such a dysfunctional healthcare system. I hope I haven't offended you.

In the UK and in Europe in general, there is trend for doctors to grant a celiac diagnosis when ttg-iga scores reach 10x normal. Your daughter's scores certainly meet that criteria. I am not guaranteeing that will prove to be the case in your situation as I don't think that is yet a universal protocol even in the UK and in Europe. Some doctors may still insist on doing a scoping with biopsy to confirm the celiac blood antibody test results before granting an official celiac diagnosis. Beginning a gluten free diet now would risk sabotaging the results of the biopsy. There are also government benefits/stipends available in some areas of the UK to offset the cost of gluten free food and also some additional follow-up care if there is an official diagnosis.

 

[Scott Adams]

It is shocking that you were apparently not informed about this positive celiac disease test.

In the Europe the protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease.

According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy:

• Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults
• TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases
• No More Biopsies to Diagnose Celiac Disease in Children!  

 

[cristiana]

Hi @MTAC

Welcome to the forum.  I am so sorry to read about your situation.  I'm a UK coeliac so I thought I'd add this  to Trent's and Scott's excellent posts.

Here the UK my TTG test results frequently lag behind my other annual lab results.  I think the longest it took was a couple of weeks, but from memory on this forum I've read at least one other person had to wait three weeks or more.  I've never understood why this particular test takes so long to come back, but it does seem to be the way it is.  I wonder if my American counterparts on this forum have the same issue?

Anyway,  it is dreadful that you weren't told, but I have friends and family in the healthcare sector and I know that staff are often so stretched, somethings are getting missed, despite their best efforts.  (It's happened to me, too -  I looked up some blood results recently on the NHS app to find that my cholesterol levels were elevated and yet my GP never told me.    I dread to think what they are now and I keep meaning to do something about them.)  Anyway, it is so good you asked for the blood test results and that will be an excellent habit going forward.  I've taken to getting my consultant to print them out now, or I print them out when I get home off the App.  

I hope you get some more clarity in the next few days.  Going forward,  I recommend joining Coeliac UK - they do a wonderful App and a Food and Drink Guide that will make it easier for you to shop.

Cristiana

Edited March 17, 2025 by cristiana

[Monkeyvat]

On 3/17/2025 at 12:39 AM, trents said:

Looks like from your spellings ("coeliac"), expressions ("bloods" for blood tests) and the lack of timely communication and appointment availability that you must be in the UK. It must be very frustrating to have to deal with such a dysfunctional healthcare system. I hope I haven't offended you.

I want to stand up for the NHS! Yes, it has its issues, but after moving from the U.S. a few years ago, it’s been a real eye-opener to see just how much better the NHS is compared to the American healthcare system.

For example, I can call my GP in the morning and often get an appointment that same day. Healthcare is provided to all UK residents, free at the point of use, no matter your income or job status. That’s a massive relief. In the U.S., people regularly go bankrupt because of medical bills—it’s one of the leading causes of financial ruin. Here, that just doesn’t happen. Plus, the UK consistently reports lower infant mortality rates and higher life expectancy compared to the U.S.

No system is perfect, but the NHS deserves recognition for what it does right—and that’s a lot.

 

[Scott Adams]

I think both systems have merits and faults, but in my opinion no citizen of any country should be denied health care, and it should be a basic human right, no matter your income.

[trents]

Essentially all of our UK forum participants who are in the process of a celiac disease diagnosis report that after their blood antibody testing is done, they have to wait many months to get the endoscopy/biopsy for confirmation. My impression is that the UK/European health care models do great at addressing routine healthcare needs but poorly at specialty healthcare needs.