What next? Some advice for my little girl please

[Victoria10nz]

Hi, just wondering if you guys could provide some advice for my 8 year old girl.

Her symptoms are: very small in height, constipation, frequent urinary leaking, bumps on the back of her arms, occasional achey joints and vomitting, but these two things are very sporadic, like maybe once a month. During the 2 month gluten challenge she has developed scaley areas on her chin and eyelid, and had a crack at the corner of her mouth, that's now gone away after being gluten free for a week.

Her results are as follows:

TTG IgA Ab: 15.4 U/ml (<15.0) HH

Deaminated Gliadin Peptide IgG: 17.2 U/ml(<15.0)HH

IgA: 0.7 g/L (0.4 - 2.2)

Endomysial Antibodies: Positive A

DQ2 gene: demonstrated

DQ8 gene: not demonstrated.

So her biopsy came back negative for Coeliacs. Which is great. However, I'm now wondering does that mean something else is wrong causing her to have elevated markers. I know that biopsy's aren't always correct due to them not being able to test all the intestine (they took 6 samples), however, I guess I have to go with the results as they are presented, but would appreciate your advice on what else you think may be going on?

So if its not coeliacs, what else could be the issue? The doctors just seem to wash their hands of it and say "it's not coeliac disease, the end". What could be my next steps? Do I need to go back to the doctors? I have taken her to a Natropath who has identified some nutrient deficiancies. Could these cause the elevated markers? Or is there something else I should get her tested for?

I'm at a bit of a loss now! Thanks for your help.

[Lisahelen]

Has she been checked for b12 deficiency?

[Penel]

Perhaps have a look at 'non-coeliac gluten sensitivity'?

beyondceliac.org/celiac-dis...

ncbi.nlm.nih.gov/pmc/articl...

[Victoria10nz in reply to Penel]

Thanks, but I thought non-coeliac GS was when the bloods were negative? but since she has positive bloods and the gene doesn't that rule out non-coeliac GS? Or am I wrong in thinking that?

[Penel in reply to Victoria10nz]

No, my mistake. It looks more like potential coeliac disease. This is a quote from an American site, I don't know if it would be the same in the UK.

"If the celiac disease blood test is abnormal but their biopsy is negative, I will place a child who has growth failure and is close to puberty on a gluten-free diet and will then have the child undergo a gluten challenge after his or her growth has occurred. This cuts down on the possibility of a child's growth being stunted for life. This practice is relatively common in pediatrics where a child's growth is so critical, and if you miss the window of opportunity prior to puberty you lose height for life."

(- Dr. Ritu Verma, Director of the Center for Celiac Disease at The Children's Hospital of Philadelphia and member of NFCA’s Scientific/Medical Advisory Council).

I haven't come across anything else that would give the positive blood test...but perhaps there are other autoimmune diseases that would do so. If she has some nutrient deficiencies, these could be down to problems with absorption caused by coeliac disease, whether or not it can be spotted yet.

[Victoria10nz in reply to Penel]

Wow, thank you for that - I think that is the route we will take, as I don't want to risk her staying small and inhibiting her during her growing years. Of course there is the situation that she doesn't have it and we've made her go g-free for the next 10 years for no reason, but I'd rather take that risk whilst she is growing. I am going to meet with a specialist and talk to him about potential celiacs disease. Thanks for your help.

[Penel in reply to Victoria10nz]

Glad to hear you are going to meet a specialist, I hope he/she is helpful. It's not a well known condition unfortunately, even among the medical profession. There are instances in adults of diagnosis taking several years.

Go armed with as much information as you can find. Coeliac UK is a useful source.

coeliac.org.uk/home/

I wish you very good luck with all this and hope that your daughter is soon on the road to good health. As you say, you cannot risk the possibility of stunted growth. If you do go g-free, it poses no risk to health, whether you need it or not....just watch out for the gf 'junk' food..

Going gluten-free can seem daunting at first but there is a lot of information out there (or on here) if you need it.

[Marz]

I would buy the book by Sally Pacholok - Could it Be B12 ? It covers so many medical conditions and you will be amazed. Docs think if you are in range all is well - sadly that is NOT the case - it is where you are in the range that is key.

A vitamin cannot be patented so there is not money to be made for Big Pharma - sadly.

Check out Sally Pacholok - a nurse who worked in a hospital and her journey to being heard.

[Nickibmibile]

I didn't realise this condition could cause stunted growth, I wish I'd realised. My daughter has similar symptoms to yours and all the biopsy's come back clear or negative, and bloods too. She is now 16 with constant toilet troubles, chronic abdominal pain and her full height is 4'11", she has had tests and we've been told this is as tall as she'll get. I am 5'5" and I've shrunk! I do hope you continue to push the medics for proper answers as the older they get the harder it is to get anywhere. Good luck to you and your daughter x

[Victoria10nz in reply to Nickibmibile]

I;m sorry to hear that. I have definitely learnt that this is such a strange disease with so many different symptoms. It was only because I took her to a random doctor and she said she was slipping below the height/weight ratio, and coupled with constipation, that prompted her to order the cd tests. Other doctors have never put the two things together.

It's so frustrating when the medical world can't help... I've definitely lost my trust in them at times and through this have learnt to search for answers myself.

Thanks

[Zoe26w]

Frustrates me how docs seem to give up if they don't get an answer straight away. My daughter was diagnosed with coeliac disease and went gluten free and( dairy free for 6 months )while her gut healed.) She didn't show a huge improvement, her weight had dropped to under 6 stone, she's 5ft 4! Her consultant pretty much said 'I've no idea what else is wrong,so, bye' 😱 We had to fight to get seen elsewhere, she's now been diagnosed with fibromyalgia and chronic fatigue syndrome 😔She's 17, she missed most of years 11&12 at school/college because of this. Anyway, since taking vitD and staying gluten free, she seems to be on the mend re the coeliac, obviously she will never be over the fibro or cfs, I'm pushing her to go dairy free,(I've gone gluten and dairy free to try to get her to quit dairy too even though I didn't actually need to) my aim is whole food plant based, she's now over 9st and looks so much better. Keep pushing, trust your instincts. Wish you both all the best, it's draining when you have to fight for help, especially when you're feeling so worried. Xx

[Activity2004]

Has she been tested for type 1 diabetes (juvenile)?