My little boy

My poor little boy :( So my mum and me can't eat a drop of wheat ( I was really I'll from chip spice for example) both been tested for coeliacs but reckon its just wheat intolerance and IBS (except I can't tolerate barley, rye etc either or dairy)

Deliberately kept my littles off gluten from birth due to family history of intolerance also autism and ADHD, and bowel problems anytime introduced ( can't eat it once without constant pain and diarrhea)

Anyway that's the background so my little boy is six and I went to doc as having bad headaches, tummy aches and weight loss. (He was at his dads who lets him have gluten foods as a "treat" and then drops him back and hes ill for days.)

Doc referred him to paeds. He tested homozygous positive for hnl..dq2 but they want me to introduce gluten so they can do a biopsy. I can't bear the thought ( couldn't manage it for myself never mind my baby!!)

What to do???

16 Replies

  • Oh bless you. I can't answer that. I'm got a similar dilema also. Can't win.

    I hope all works out for you and your son.

  • Hi muschi2010,

    I don't know if this will help you any. But my husband and I were chatting alot last night and he said something that reminded me of your situation.

    He said that 'health comes before diagnosis' cos the latter takes so long and is potentially damaging. And that if our boys show any signs of my issues then 'we'd simply put them on the same foods as you [aka me] when or if the time comes" his logic is that eating gluten makes us so bad that it's not worth waiting for the diagnosis. The internal risk of long term damage isn't worth the trade off the a label is.

    This is our view but I hope it helps.

  • Yes I agree and have had him gluten free since birth but these symptoms have started after me and his dad split up last year and he gives him oreos and burger buns at MacDonald's for "treats" before he drops him off with me!!

    When I've said it makes him ill for three weeks after he said it'd be out of his system by then?? I'm not sure about doing biopsy either its just he's failing to thrive and having a lot of headaches / bellyaches/migraines and getting sensitive to other foods I can't have like bananas which obvs don't have gluten in lol. I might ask for skin allergy tests, would these show anything for wheat etc?? Thanks for replying.

  • It's so hard when our children are ill. I've read that the current blood tests for gluten and wheat only look for 3 out of (sorry I can't remember how many, but more then 3) markers. Maybe talk to dr about all the tests they can do? Plus, maybe the capsule camera might be better for your lad?

    It's hard to decide in these cercumstances. I really hope all works out for you both.

  • The only test they did was a genetic test I'd never heard of. There was no point doing the immune ones as he hadn't consumed any recently.

    Trouble is with all this my mum had biopsy years ago which was negative, I had colonoscopy for bleeding and they didn't mention any concerns (same again blood tests would be no use) they just said I had irritable bowel but that doesn't give you joint pains, migraine/brain fog etc.

    I am certainly not symptom free even tho I'm gluten free I think I'm reacting to the gluten free oats?? I asked my mum and she said she can't eat oats either.

  • 10% of coeliacs are unable to tolerate GF oats - the subject is an ongoing study in Australia.

  • Hi babe I feel for your little boy having to go through eaten gluten yo get a diagnosis its so cruel but thats the only way they will find it my sister took so long to get a possitive result for coeliac disease becouse first she went gluten free for a long time because she felt better with the cramps & feelen like hell & never far from the toilet with the horrible cramps & urgency then she went bak to gluten food & messed up the test when they were tyen to find it but I told her you have got to eat as much gluten to get a accurate result for coeliac disease I felt so cruel tellen her that becouse she felt so bad when she went bak to gluten mine was so different from my twins they thought mine was ibs untill I lost so much weight with eaten gluten & went down to a waif unknown to me for eaten gluten that I had coeliac disease but before they found it I had to have a urgent blood transfusion becouse I had severe anemia brought on by not getten the right nutrients & eaten gluten they sed I had so much damage in my intestines so hun try & find a way round it so yur little boy dusent suffer to much before they find it stay strong patricia

  • It's sounds like you are looking for a diagnosis and a label so that your partner will be forced to act more responsibly with your son and not feed him junk food. If you know that your son is made ill by eating gluten, then that really should be enough for your partner. Your son shouldn't have to go through with a health threatening gluten challenge just to confirm what you already know.

  • My ex seemed very shocked when I told him our son will need putting to sleep and a bit taking out of his bowel because if it so I'm hoping that will do the job!!!

    The paediatrician is the one wanting it confirmed as he said there can be other complications like thyroid and diabetes connected to it?

  • Can't thyroid and diabetes problems be confirmed with blood tests? Why the need for a gluten challenge?

  • I need to research it all first and I'm going to ask to get a second opinion and a dietician and about skin allergy tests.

  • I think a second opinion would be a very good idea. Good luck!

  • Perhaps Coeliac UK may be helpful. I would have hoped that finding the gene would be a good enough diagnosis.

    Good luck.

  • Thanks, apparently the gene just tells you who is susceptible to it.

  • What do you want to happen? Because currently if you want a proper diagnosis then you need damage to the gut - that's what the biopsy is looking for. HLA DQ2 is one of the genetic markers but it doesn't automatically mean coeliac - because its a common marker.

    I understand that it is possible for children who have been on gluten to be diagnosed via blood tests (not gene).

    Anyway, what's wrong with your partner? Is he trying to get at you by being abusive to the child? I'd be getting the paediatrician on side and taking the idiot along with me.

  • PS I had to look what 'chip spice' was - it seems to contain MSG.

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