14 yr old: from jenny on 2008-10-19
my 14 yr old son has been ill for ayear.
tingling pains,aches in joints,headaches,tires very easily, mouth ulcers,low moods.
eventually sent to paedeatrician. all blood tests normal apart from positive one for Coeliac test.
put him as suggested on gluten challenge.made him so ill and could barely move joints some days but biopsy has come back negative.Help! so want him to get better and he is deperately missing doing normal stuff with friends
14 yr old: from Peter on 2008-10-19
The symptoms and a positive blood test all suggest the coeliac condition or a gluten allergy.
The severe response to the gluten challenge also supports this diagnosis.
I assume from what you say that your son was on a completely gluten-free diet before the challenge. A negative biopsy is not uncommon in this situation even in those who earlier had a positive biopsy. The negative biopsy should not be regarded as a definitive diagnosis.
Discuss this with your Doctor. A diagnosis of coeliac and treatment with a completely gluten-free diet still seems the most likely one
14 yr old: from jenny on 2008-10-22
not entirely gluten free but had start to reject gluten products eg toast. yorkshire puds and feeling ill after bacon sarnies at school.
he had almost self diagnoised himself in the summer hols and kept telling us he thought he had wheat allergy! maybe his body was telling him something! guess as an intelligent 14 yr old he worked that out
also his 8 yr old cousin was diagnoised with severe Coeliac 2 yrs ago .
the amount of gluten at challeng was far greater than normal .
can a negaitve blood test at time of biopsy be false as well as biopsy
14 yr old: from Peter on 2008-10-22
A close relative who has been diagnosed as Coeliac makes this diagnosis even more convincing. There is a strong genetic component for suseptibility to the condition developing.
The blood test changing from positive to negative after a period of being gluten-free is also normal.
The severe response to a challenge after a relatively short period on a gluten-free diet is also very normal - and something you should have been warned about.
The normal advice is to get tested as soon as you suspect there is a problem before starting a gluten-free diet because of the problems with the test and biopsy after the diet has started. If there are any other close relatives who fail to thrive as small children, or complain of similar symptoms, or avoid bread, get them tested as soon as possible without trying a gf diet first
14 yr old: from jenny on 2008-10-23
thanks so much.
it seems to be such a difficult disease to get the doctors to give a definite diagnoses for if the "gold standard" biopsy proof is negative.
the consultant who performed the biopsy said we could either have another biopsy done in 6 months! (he is 14 with no social life and patchy school since symptons got worse so not even an option !) or do 6 months trial of gluten free diet.
we have started him and rest of family on gluten free diet and as i tend to do home cooking anyway have not found it too difficult.will let you know how it goes.
14 yr old: from jenny on 2008-11-01
think we have all proof we need !
i made a silly mistake and got some Mrs Crimble peanut cookies that were labelled wheat free but not gluten free!
he had had 2 weeks on gluten free and we were starting to see some signs of improvement but within after3 days of eating these biscuits he had strated to go downhill particularly with joint and nerve pain.
felt so silly but still getting used to diet,
will definitely not have biopsy redone as one of the hospital consultants suggested after it
. too awful for son and his paedeatrician agreed and said to start him on gluten free diet
14 yr old: from jenny on 2008-11-07
are mood swings common in people with gluten problems.
we noticed huge lows after eating gluten.
started to see change on gluten free diet with joint and nerve pains and having got older son we realise some are normal teenage moods but the ones associated with gluten are terrible low hopeless moods.
do these improve
14 yr old: from Peter on 2008-11-07
Mood swings and depression are a symptom of eating gluten for some people and they definitely improve on a gluten-free diet.
They can be an indicator of a child not following the diet properly, so keep an eye open for the warning signs.
It can make the problems of following the diet more difficult for the child, as they can easily get fed up with the diet, and eat some gluten - which then induces further depression. The best strategy is to make sure that they are aware that gluten can make them feel bad about themselves, and if they stick to the diet things do get better
14 yr old: from jenny on 2008-11-13
we went back for offical follow up appointment to gastro-enterologist(?) on monday.
because of positive blood tests, obvious reaction to gluten and symptons they have officially diagnosed my son as Coeliac. we also saw dietitian
at least we can get some basic foodstuffs on prescription and he feels he knows what he is tackling.
he is just about managing school but shattered
14 yr old: from Renee on 2009-04-26
I am digging around ont he internet trying to figure out why my son's symptson got worse, when they seemed to be calming down.
He has been doing the Gluten Free for 1 1/2 weeks, just dianosed that he is allergic to wheat, yeast, rye, eggs, milk, cheese, everything!
Again, it seemed like things were calming down and Thursday I have him some BBQ sauce with his chicken. The next day I am preparing to give it to him again and i re-read the label and find that wheat is hiden in the soy sauce that is an ingrediant in the BBQ Sauce. By Friday his symptons were so bad i was in tears.
Is it possible they only got worse because of the BBQ sauce, OR does the body go through withdrawls/detox and get worse before it gets better?
Anyone? I would appreciate any information anyone has. This is breaking my heart