I would love advice from coeliac experts

[RTchoke]

I really need advice on what to do with my DD2 who is just under 4 years old and has always had tummy troubles. Relevant background is that her paternal grandmother has coeliacs disease (diagnosed late in life).
 
DD2 has a delicate stomach. If there is a stomach bug going around she will get it, if she has a mere cold she will throw-up with it, she often complains of stomach pain and sometimes it is bad enough to interrupt her playing. Her poos are usually rather too soft and a very light yellowy browny chalky colour. She is plagued by recurrent mouth ulcers
 
18 months ago I got a referal to a peadiatrician because I thought she might have coealicas given the family history. We had not excluded gluten from her diet at that point although she never liked bread or pasta so she was naturally selecting a reasonably low gluten diet. The pead did a blood test and found no antibodies plus she was not aneamic (her iron was on the low side of normal though). He said there was a tiny chance it could still be coeliacs because she was only 2.5 so the blood test was more likely to give a false negative, but given she was normal weight he doubted it. As further investigation required a GA etc we decided not to pursue it. I opted to exlude gluten from her diet to see if it helped but because we had no formal diagnosis I have not been hugely strict about tiny bits of gluten entering her system, so for example her gluten free bread goes in the family toaster which contains wheat crumbs and I don?t check the labels of things like sweets in order to exclude every last microgram of gluten.
 
Fast forward 12 months of this diet and she is 80% improved. She complains less of stomach pain and has fewer mouth ulcers and more energy. She has grown hair on her head which she never had before. However her stomach is still sensitive, she throws up often, her poos are still soft and yellow.
 
My question is does this sound like coeliacs despite the negative blood test and the only 80% improvement on the diet? Should I pursue a formal diagnosis even though I will have to reintroduce gluten and she will beed a GA? Without a formal diagnosis it seems extreme to go for meticulous gluten exclusion but should I be considering that? Basically what would others do in my position?

[RTchoke]

Bump

[terrywoganstrousers]

I think it's worth a try, yes.

[CMOTDibbler]

I'd go for diagnosis before she starts school as many things are better/easier with a diagnosis

[freefrommum]

I agree. I know it will probably be hard re-introducing gluten as it may well bring back all the symptoms (and please be aware that they might be worse this time) but in the long term I think it's worth getting a definitive answer. False negatives are fairly common with the blood test, especially in one so young and given the family history and symptoms I think it's worth pursuing. Going gluten free (properly) for life is a big decision and not one that should be taken lightly. If you get a formal diagnosis of coeliac disease you should be entitled to gluten free products on prescription (depending on your local health board) and advice from a dietician plus regular check ups with consultant.

[megandraper]

yes, i think definitely pursue a formal diagnosis.

if she is coeliac, then the small amounts of gluten that you are letting through to her diet will be causing all sorts of unpleasant internal damage. getting a proper diagnosis will help you and her be strict about the diet.

i sympathise. DS1 is 4 and diagnosed coeliac. We are very sure that DS2 (now 3) is also coeliac, but he tested negative. He is now (strictly) gluten free, and we will do a gluten challenge/test when he's older (about 6 or 7). It is frustrating not getting a proper diagnosis.

[CKCContributor]

Other than her paternal grandmother's diagnosis, you did not mention if she has one or both of the Coeliac Genes? Have you a confirmation of her having either or both of the known HLA-DQ2 or HLA-DQ8 Coeliac Genes. If she has one of these genes then she is predisposed to getting Coeliac. If she does not have one of these genes then it is not Coeliac but may be a Gluten Sensitive.
Coeliacs are part of this larger group of "Gluten Sensitive\Intolerants".

Coeliacs and Non-Coeliac Gluten Sensitives are part of this larger group who have a sensitivity\intolerance to Gluten. Members of this group are known to develope many other autoimmune diseases, illness or allergies as the body reacts to Gluten ingestion.

As a father of four Coeliac kids and their Gluten Intolerant mother we have been dealing with coeliac for the past 10 years and have a widespread of experiences dealing with Gluten Intolerance.
www.gluten.net/gig%20kids/celiac-kids-magazine.aspx

It is important to understand

1. That word Gluten refers to the protein (Prolamines) found in all grains (Corn, Rice, Wheat, Rye,barley, etc...), at different amount, and has different names.
   
2. The misuse of the word Gluten to only refer to Wheat, Rye, Barley, and Oats has come from an original study done in germany that used the term many years ago. This sensitvity to the gluten effects each individuals' body differntly with different sensitivity thresholds, and reactions.
   

Some advice from experience:
First, Get referred to and work with a specialist on Coelaic and Gluten Intolerance. Avoid wasted time, money, tests and body damage seeing GPs who have little experience with this issue.
Second, If it is Coeliac disease then a strict adherence to all possible forms of Gluten ingestion is required, since even 1 part per million can do damage to the small intestine. Although each individual's threshold to noticing a change or having inward or outward symptoms is different!
Third, If it is coeliac Disease or Gluten Sensitivity\Intolerance you should become thoroughly educated in all the (animal and People) foods, products, vitamins, and medicines that can and do contain gluten. Be watchful of the many methods, situations, daily actions and practices by which we can contaminate, inhale and ingest Gluten (Glutened).

If it is not Coeliac and your daughter is feeling and getting better on a gluten free diet. Work with your dietician on keeping her a Gluten Free diet. Also, Still follow the guidence given for a celiac and Gluten Sensitives.
Hope this helps!

[RTchoke]

Many thanks for all the advice. CKC thanks for the links too, I will explore those. How wld I persue genetic testing?

Does anyone know an expert they'd recommend for a consultation? The pead we saw seemed to know nothing of coeliacs. We are London based.

[Seriouslysleepdeprived]

I'm a coeliac which was discovered via biopsy from an endoscopy for something else. My bloods have always been negative & biopsy is the gold standard in diagnoses terms.

I would absolutely get a definitive answer. The constant damage to the intestine can impact on fertility and result long term problems such as osteoporosis and nerve damage.

We see http://www.paediatricgastroenterologist.co.uk/home.htm this guy privately for DS. He has a clinic at the Portland on a Tuesday.

[Seriouslysleepdeprived]

try again