Celiac Symptoms In 3 Yr Old, Pos Igg Neg Iga/ttg

[WorriedMum]

Can anyone share experiences or offer any advice.

My daughter is 3.5yrs old

She has complained of regular stomach ache for the last 18 months and has constant bouts of loose stools

Since 6 months she has dropped from the 25 centile to between 2nd and 9th for both height and weight

She suffers with ketotic hypoglycemia and is allergic to eggs

My mother has celiac disease

We have finally managed to get the docs to take blood tests.

They first did EMA tests IGA and IGG. IGA was negative and IGG positive

They then did TTG IGA which was also negative (1.2).

They told me that IGA levels were fine and iron levels are good (14)

Their feeling is that this concludes that my daughter does not have celiac disease

I am worried that this is not conclusive and from what I have read, small children do often get negative results. They have offered no explanation as to why her IGG was positive

Has anyone encountered anything similar. We are in the UK so in the NHS process which is slow and laborious in getting to see specialists

Thanks

[shopgirl]

Can you try the gluten-free diet with her to see if she improves?

The lack of anemia isn't really conclusive to anything. Some Celiacs are anemic and/or vitamin deficient. Others aren't. My vitamin levels were fine and I was symptomatic for quite some time.

It seems like you could either wait to get her into a specialist (sorry, I don't understand NHS as an American) or you can do a gluten-free trial run. You'd at least have your mom's insight to guide you through it. If she improves, then you'd have to decide whether or not to put her back on gluten for a diagnosis or just keep her off it.

[WorriedMum]

Thank you for your response. Its interesting to hear that you weren't deficient in vitamins. Our doctor used it as a form of dismissal - well her iron levels are fine so she can't be!

NHS is our 'free' well paid for by our taxes, health service. Its great to have free medical treatment but its a very slow process trying to get assessed and to see the right docs. Am going to look into private options but its very expensive as most people don't have private health care insurance (we don't).

Appreciate you posting back.

Thanks

[domesticactivist]

I'd just try the diet and go from there. I'm interested in more info about small children being more likely to have negative results... I'm about to have bloodwork done on my daughter because she doesnt have gi issues but is very small. (4'4" at 11.5 years)

[beebs]

Your story sounds so much like mine!

My son started getting loose, pale stools at the end of 2009 when he was 3. It just went on and I could see he was getting really sick.

He ended up severely anemic and developed a heart murmur because of it. My mother is celiac. I have been struggling and fighting with the medical profession to take him seriously for over a year.If I could do it over again - not sure I would bother, I think I know much more now and I think I would have just put him on the diet to see if it made a difference. I have seen my boy - who was so bright and quick to pick up things go from that to a little man who has no concentration and the worst temper tantrums. He has not put on any weight in a year but has grown taller, he has accidents in his pants all the time. He has more invasive tests than I care to remember - and still no answers.

Its is heartbreaking and frustrating. Fact is those tests really seem pretty useless with kids anyway. Maybe its worth going gluten free just to see and if you want to do a gluten challenge and endo later when she is older??

We have just started the gluten free diet - I really hope I haven't left it too long!