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Am I Right To Assume?

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buttonburger Rookie
buttonburger
Posted

Hi all :D

Have just joined the forum so bear with me while I find my bearings & forgive me if I ask silly questions...

A little history first.

DS was a year old last week. He was a premmie baby & exclusively breastfed from day 1. After 8 days at home we made our 1st trip back to the hospital as he was making so much noise at night that we panicked when he wasnt grunting. Apart from this he was restless, irritable, wouldnt lie flat at all & wanted constantly to be upright, was gassy & had horrible green foul smelling nappies at least 8 times a day. We were told reflux which I didnt believe for a second <_<

Things didnt improve - even with various medications- and he soon developed a wheeze. We returned to the hospital on numerous occasions but he was gaining weight so no-one felt there was any cause for concern. Then his wheeze got to the point where he was labouring to breathe. He was nebulized twice at the GP surgery, & sent to the hospital where they nebulized a further 3 times before they would even xray his chest.

When the xray was fine & his condition was improved it was suggested I cut dairy from my diet. I did, replacing it with soya (no-one mentioned I should avoid that too!) & he started to pass blood. The ped at this point asked his collegaue (an allergy specialist) for his opinion & he said that DS had probable food allergies. He tested positive for wheat, dairy & egg that week.

Since then lots has happened - he was put on a hypo-allergenic formula as he was still reacting to foods in my very limited diet & we eventually started weaning. He has subsequently reacted badly (passing blood) to oats, corn & millet & has milder reactions to various other foods (potato, parsnip, apple etc) which dont concern me so much. His wheeze has never gone & we've been told its really worsening asthma without an official diagnosis - he has two inhalers & some night time meds plus a syrup for his inflamed gut which he takes in the morning. He coughs like an old man during the day & almost chokes when coughing through the night.

When he reacted to the other grains I started searching on line & have been reading lots about celiac disease & am starting to draw some conclusions. And since I know it seems to be a family thing I wasnt surprised when I tested +ive for allergy to wheat & dairy myself yesterday (they didnt test for gluten). I didnt test positive for oats/rye but have noticed I get heartburn when I eat them.

My older son (5) has always complained of a sore tummy & headaches. I've had him at the GP on numerous occasions because of this and his slight build/picky eating/diarrhoea. The GP brushed it off saying that all kids go through this stage & I listened. But now I'm paying more attention to when he complains in relation to what he has eaten & I see a pattern emerging... & it involves wheat (as well as a terrible case of bad mum syndrome :o )

But where do I go from here? Will my GP test my son and I on a whim of mine? If the little one was tested what would be the result since hes on such a restricted diet anyway? (although he does eat Rice Krispies in the morning which I have just discovered are not gluten-free & he could be CC as I hadnt realized the risk of this til I started reading more today) Could the results be trusted since hes so young? And do I really need to know?? How do I broach the subject with a consultant who specializes in allergies & is reluctant to consider other problems/causes.

I've always been certain that there was another issue apart from the allergies but I dont know if I'm just jumping to conclusions now... sometimes too much information can be a bad thing and all that :unsure:

Sorry for the ramble & thanks in advance for any feedback.

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Juliet Newbie
Juliet
Posted

Honestly, I can't give you too much advice in this arena - my kids don't have food allergies at this time. But I certainly feel for you, and I can say from the bit of experience I do have with this disease and my son, TRUST YOUR INSTINCTS! In the end, I was shocked to find out how little doctors actually do know but still act like they're the authority on the subject and you are just paranoid. We almost lost our son because of this attitude. I now have a new pediatrician who admits he doesn't know everything, but he's more than willing to find out whatever he can and works with me on getting the information.

Good luck, and I would try to get the tests done for everyone you suspect may have it. Just insist on it - that was the only way we were able to finally get some help for our son.

ptkds Community Regular
ptkds
Posted

I am so sorry you are going through all of this!

To make a long story short, when my dd was having problems, I did some research and discovered celiac disease. I then asked my dd's ped to test her for it, and she did. It came back positive.

So just ask your dr to test both of your sons and yourself. If he says it "isn't necessary", just insist. You have to stand up for your own health and for the health of your children. But remember that testing in children is often unreliable. Even if you do get a negative result, you may still want to try the gluten-free diet for a while and see what happens to your dc.

Good luck!!

ptkds

mouth Enthusiast
mouth
Posted
Hi all :D

Have just joined the forum so bear with me while I find my bearings & forgive me if I ask silly questions...

A little history first.

DS was a year old last week. He was a premmie baby & exclusively breastfed from day 1. After 8 days at home we made our 1st trip back to the hospital as he was making so much noise at night that we panicked when he wasnt grunting. Apart from this he was restless, irritable, wouldnt lie flat at all & wanted constantly to be upright, was gassy & had horrible green foul smelling nappies at least 8 times a day. We were told reflux which I didnt believe for a second <_<

Things didnt improve - even with various medications- and he soon developed a wheeze. We returned to the hospital on numerous occasions but he was gaining weight so no-one felt there was any cause for concern. Then his wheeze got to the point where he was labouring to breathe. He was nebulized twice at the GP surgery, & sent to the hospital where they nebulized a further 3 times before they would even xray his chest.

When the xray was fine & his condition was improved it was suggested I cut dairy from my diet. I did, replacing it with soya (no-one mentioned I should avoid that too!) & he started to pass blood. The ped at this point asked his collegaue (an allergy specialist) for his opinion & he said that DS had probable food allergies. He tested positive for wheat, dairy & egg that week.

Since then lots has happened - he was put on a hypo-allergenic formula as he was still reacting to foods in my very limited diet & we eventually started weaning. He has subsequently reacted badly (passing blood) to oats, corn & millet & has milder reactions to various other foods (potato, parsnip, apple etc) which dont concern me so much. His wheeze has never gone & we've been told its really worsening asthma without an official diagnosis - he has two inhalers & some night time meds plus a syrup for his inflamed gut which he takes in the morning. He coughs like an old man during the day & almost chokes when coughing through the night.

When he reacted to the other grains I started searching on line & have been reading lots about celiac disease & am starting to draw some conclusions. And since I know it seems to be a family thing I wasnt surprised when I tested +ive for allergy to wheat & dairy myself yesterday (they didnt test for gluten). I didnt test positive for oats/rye but have noticed I get heartburn when I eat them.

My older son (5) has always complained of a sore tummy & headaches. I've had him at the GP on numerous occasions because of this and his slight build/picky eating/diarrhoea. The GP brushed it off saying that all kids go through this stage & I listened. But now I'm paying more attention to when he complains in relation to what he has eaten & I see a pattern emerging... & it involves wheat (as well as a terrible case of bad mum syndrome :o )

But where do I go from here? Will my GP test my son and I on a whim of mine? If the little one was tested what would be the result since hes on such a restricted diet anyway? (although he does eat Rice Krispies in the morning which I have just discovered are not gluten-free & he could be CC as I hadnt realized the risk of this til I started reading more today) Could the results be trusted since hes so young? And do I really need to know?? How do I broach the subject with a consultant who specializes in allergies & is reluctant to consider other problems/causes.

I've always been certain that there was another issue apart from the allergies but I dont know if I'm just jumping to conclusions now... sometimes too much information can be a bad thing and all that :unsure:

Sorry for the ramble & thanks in advance for any feedback.

HI, Sorry to hear about all of your problems, not rambling, you are asking others for help!!!! I hate to say it, but it sounds like you need a new doctor for your kids. Do you take them to a pedatrician? I would suggest a peds allergist/immunoligist, and a peds GI doctor.. Passing blood can be a serious problem.. I am very lucky. There is a childrens specialized hospital near where I live, and my Ped. has been in practice for more than 30 years. If, you live in NY try Schneiders Childrens Hospital.. THEY ARE WONDERFUL!!!!!!!!!!!!!! Good luck.. Mouth

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      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
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