Diagnosis help

[roobiedoobie]

Hi,This might turn out to be very long.

I was diagnosed with coeliac disease 12 years ago, and my brother was diagnosed 29 years ago.

My daughter has suffered with stomach issues all her life.

Pain, bloating, diarrhoea, constipation.

She is also deficient in various vitamins and is always anaemic.

She gets funny dots on the tops of her arms.

We have been to the GP many times and have always been told that the coeliac screen is clear and that it must be IBS but she still doesn't improve.

Last November she had a blood test which showed she had raised levels of TTG.

She was told to do the 6 week gluten challenge at the start of December but it ended up being 8 months in the end.

We saw the consultant who basically said go away and do the gluten challenge and we'll refer you to pediatric gastro but the waiting list is very long.

My daughter was heartbroken, she has suffered through her exams and was really hoping to be sent to have the biopsy to try and get some answers only to be left with more waiting.

I decided that we would start her on the gluten free diet because she wants to go in to sixth form not being the girl who always has to go to the toilet, but it occurred to me today that if the hospital say she's got to eat gluten again, and she reacts the way I do if I get glutened, she's basically going to be in a bad way and unable to function.

What should I do?

I can't say she's been much better so far on the gluten free diet, although it's only been a week.

Any advice very welcome

Cheers

[Littleeric]

Hope things get better soon.My own experience sounds similar.

I just had blood tests and been told that egg white is causing my stomach ache issues.

So i have cut out egg, no improvement yet.

Good luck.

[Researchfan]

Sorry to hear.That’s a tough one. Like a lot at the mercy of NHS waiting lists. If the blood test result showed high 8 months ago. Has she been screened for the TTG or anti DGP (used also in paediatrics), since? If not, and she’s been eating gluten all that time odds are the number will be high. The new guidelines for Coeliac Diagnosis, but was the case in children anyway, is if 10x above the upper limit, Coeliac could be diagnosed without biopsy. Maybe worth a GP appointment? Try and get another blood test? If it’s only been a week gluten free the antibodies take weeks to be raised and weeks if not months to return to normal.

Have you seen a hospital Coeliac specialist Dietitian also? They have some power to order testing again. Emphasis how ill it makes her and can’t continue with the gluten challenge.

Good luck.

[Narwhal10]

Hi roobiedoobie,

I am sorry to read about your daughter. Several things spring to mind as mere suggestions.

GUTS U.K. have a wonderful leaflet about Coeliac disease. It is definitely worth contacting them and they can send it to your G.P. surgery and one for you.

gutscharity.org.uk

I do hope your daughter has had all her vitamins, minerals and possibly, amino acids (building blocks of proteins) deficiencies addressed specifically for her and under the care of a dietitian. They are the qualified health professional in this area.

In order, for you to advocate properly for your daughter and have a good relationship with your GP surgery, it maybe worth writing to the G.P. and copy in the Practice manager. These are just some pointers:-

1) There is first blood relative and family history of coeliac disease.

2) Here is a link to NICE guidelines for coeliac disease [NG20]

nice.org.uk/guidance/ng20

In SECTION 2 (second page) is this:-

Serological testing in people who test negative for anti‑transglutaminase.

‘In people with suspected coeliac disease, IgA tTG is most commonly used as the first‑choice test to detect the presence of coeliac disease antibodies but some people with coeliac disease will get a false negative result’.

[In science, it is called ‘seronegative’]

3) Your daughter has displayed signs and symptoms of the disease for x amount of years which are x, y, z.

4) She has deficiencies.

5) The impact it has upon her quality of life are as follows:-

Please list:-

* Leaving class.

*embarrassment.

*too tired to concentrate for studies.

*socialising or undertake extra curricular activities,

* enjoy family time.

(It also may be worth adding how it can affect her periods and therefore, her fertility in the future years). So, there is an index of suspicion and likely that she has this disease.

Also apply for all her blood results, if you have not already.

You may want to consider private testing so that she will only have to do a gluten for 6 weeks. It is costly but to have the official stamp on her medical records.

Or it may be a case of well, you and your brother have disease. So, why do we have to prove it. Do I need to put my daughter through it AGAIN ? It is a discussion that you as a family need to do.

All the best and hope that helps. 🐳