Worried About My Children, How To Get Doc's To Pay Attention?

[Ilovetea]

Hello, I have concerns about my children (age 6 and 4) and possible celiacs. My concern initially was only with my son age 4, he has had gastric problems (diarrhea, constipation, pale fatty stools, lots of mucus, blood in stools.....sorry if its TMI) since he was born! he is skinny, even though he eats like a horse, he is always hungry. He has autism and limited speech so it's hard for me to know for sure if he is suffering from pain, but he is very moody and cries a lot. he has episodes of vomiting without any cause that I'm aware of, and constant colds, coughs. he has had a runny nose his whole life! He suffers episodes of fatigue and sometimes I cannot drag him from his bed of a morning. I am convinced he has some kind of allergy, but my doctor will not listen, simply saying that kids suffer from colds, gastric problems etc and he will grow out of it.

My daughter age 6 suffers from loose stools, fatigue, aching limbs, moodiness , excema, reoccuring ear infections, nausea and has problems with some of her teeth growing without enamel.

My cousins daughter aged 3 has recently been diagnosed with celiacs, and when she told me about the symptoms alarm bells starting ringing For both of my children, but I don't know how to get my doctor to take me seriously! what kind of testing should I ask for? Are they likely to do any tests based on these symptoms ?

[nvsmom]

Welcome to the board.

 

I agree that they have plenty of symptoms and should be tested, especially when you consider that it is in the family and that autistics often have intolerances with casein and gluten. (My own son has mild aspergers and when he is off gluten and casein, his symptoms largely disappear - although he did test negative for celiac disease.)

 

The most widely used tests are:

 

• (Anti-Endomysial) EMA IgA
• (Anti-Tissue Transglutaminase) tTG IgA and ttg IgG
• (Deamidated Gliadin Peptide) DGP IgA and DGP IgG
• Total Serum IgA (a control test)
• (Anti-Gliadin) AGA IgA and AGA IgG (older tests)
• endoscopic biopsy

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Make sure the kids are eating gluten until their tests are complete or they may not be accurate.  Best wishes.

[tarnalberry]

Autistic kids who also have GI symptoms often see help from the gluten free diet. Tooth enamel defects early in life are also strongly correlated to celiac.

Your doctor is your service provider; he works for you. You need to either have a serious talk with him ("celiac is genetic and it's in our famile, the kids have symptom X, Y, and Z which are strong signals of celiac. This is a reasonable request, and you need to show me some darn good evidence that its not before I will believe you because you simply aren't speaking sense.") or hire a new provider. You are not entirely stuck with crappy care, though it may cost more to switch.

If you absolutely can't get anyone, anywhere to test them (which is ridiculously unlikely - an ND can order the tests and are generally more open to food issues), you don't need a doctors orders to try a gluten free diet. There are downsides to that, but their health is your responsibility and this isn't something you need a doctor to treat.

[Ilovetea]

Thanks for your replies, I've written down the tests you mentioned and I am going to call my doc's first thing. I hate going to the doctors about anything concerning my children that isn't obvious to the naked eye, because I just get treated like the 'over protective mum' , they didn't even take me seriously about my sons autism, they said he was normal and I was worried about nothing!

I'll let you know how I get on x

[mushroom]

Anyone would think there was some enormous reward for receiving a celiac diagnosis -- at least judging by the way doctors attempt to prevent us from getting the diagnosis    It really should not be this difficult to get tested    But having spent five years on this board, I know what you say to be true, and it is so sad that we have to go there begging to be heard.

 

Try the more assertive approach outlined by tarnalberry -- she knows whereof she speaks -- and don't take no for an answer!