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Just a quick query....

Is there something about the gluten free breads/pastas etc that makes it impossible to eat alot of it?

My son seems able to stomach alot of rice but when it comes to eating gluten-free pasta he seems to get full much quicker & he will only eat small amounts of gluten-free bread too... just wondered if its something in the make up of it, or does he simply not really like it? He hasnt ever had 'normal' bread/pasta so it cant really be that hes longing for something else!

Thanks in advance

Julie

Hi there

My son has had blood in his stools on a number of occasions - the first time was when i was still nursing him & had replaced dairy with Soy & his allergist assumed from that that he has a Soy allergy (non IgE). He also had blood in his stools when we tried him with Oats, Corn & Millet.

Sounds like an intolerance of some sort...

I understand how discocerting it is to see the blood so I hope you get to the bottom of it soon.

Take care, Juliex

Thanks for everyones advice.

I spoke with the allergist yesterday & he was totally dismissive of any opinion but his own - & that is that my youngest has multiple food allergies & that is that. He said how could I even be suspicious of celiac disease when he hasnt been exposed to grains/gluten yet?

So what about his reactions to basically everything I ate & possible CC & the gluten in the Rice Krispies his nurse advised me to give him??? He tested +ive for a non IgE wheat allergy @ 4&1/2mths (amongst other things) & hasnt tolerated *any* of the grains we have tried so far (oats, corn & millet) but to him thats not indicative of a problem other than allergy.

I briefly discussed my elder son & he said he was an ideal candidate for testing but that the family doctor could do that - he didnt even suggest what tests should be carried out! (luckily I have the list from here to take along with me on wednesday )

The fact also that I recently discovered I have a wheat & dairy intolerance, coupled with my sons current dietary problems seem irrelevant.

It was almost as if he didnt want to consider celiac disease as it would mean he would lose a patient. Hes the top guy here so I am reluctant to discharge ourselves from the clinic - and my son is still so young that we really need dietic advice for him for a while longer, but hes helped me answer my own questions - he isnt the right guy for the job.

Ok, I could be wrong (my gut instinct tells me I'm not though), but he could at least try to put my mind at rest rather than dismiss me like I'm a neurotic mum. So I have made an appt for out family GP for this wednesday to request the full set of tests for my son & to heopfully get a referral for a pediatric GI.

Thanks to everyone once again,

Julie

Believe me, you can see it visually. I also disagree Larry Mac. That is one of the ways I can tell for sure when I get glutened.

-Laurie

I was talking with my youngest sons dietician yesterday about my concerns over my eldest sons dramatic weight loss etc & she actually asked if his stools float & if they were pale. When I said that they always do & always are she told me that really wasnt a good thing & that it indicated a malabsorption issue which we will be raising with the consultant on friday.

HTH

Julie

I have a 10.5-month-old who has a gluten allergy/intolerance (diagnosed through elimination and challenge). She most definitely reacts to exposure through breastmilk, including tiny amounts (one mouthful of bread at communion). As a matter of fact, after the 10 days of runny nose, erratic bowels, rash, and irritability (aka screaming most of her waking hours) she last experienced when given gluten directly, it's the only way I'm willing to test it at present. And we'll wait quite a while. When I've spoken to the pediatrician about it, he said that most kids outgrow pediatric allergies and that he didn't think it was worth testing for at least another year. "Just avoid it," was his advice.

I wanted to come ask what the likelihood is that with gluten allergy at this age that she will eventually be found to have celiac. If anyone knows, I'd love to hear.

I'd be interested to hear others opinions on this too... my youngest was how you describe (runny nose, foul smelling frothy erratic bowels, rash, irritability, screaming every waking hour) every single day for the 4&1/2 months that I nursed him. Right now he has a *v* restricted diet & still isnt 100% (either that or he is just a *v* difficult baby! ) If it is celiac disease then he could be getting gluten elsewhere of course - toiletries or CC

I spoke with the dietician y/day & she seems to agree with me that there is def some sort of GI issue - & she mentioned celiac disease before I did. I assume she wouldnt have mentioned that if she felt he would outgrow the intolerances he currently has, but thats just a hunch.

I see the allergy consultant tomorrow so I will ask his opinion as to whether hes likely to outgrow a gluten intolerance (like they say can happen with other ped allergies/intolerances) - if thats all that it is...

Juliex

Hi All

I ask because my youngest DS is currently under the care of an Allergy Consultant due to multiple food allergies.

He's currently on a dairy/wheat/gluten/soy/nut/egg/fish free diet (with a few oter exclusions thrown in there for good measure!) but until I discovered this site I was unaware of the risk of CC or the fact that Rice Krsipies (recommended by one of the allergy nurses ) contain gluten.

Having recently discovered that I'm allergic to wheat & dairy myself, and having monitored my older son & his poor weight gain/moodiness/sore tummy/headaches & floating poo (sorry for tmi!! ) I'm now strongly suspicious of celiac disease and am trying to prepare my speech for the Allergy specialist when we see him on Friday - we see him about every 6-8wks currently. I would like him to assess DS1 who has dropped from the 50th to the 9th centile in 12months but I want to get my argument right.

Will he know enough about celiac disease to rule it out or confirm it - in all 3 of us if need be? or should I insist on see a ped GI for the kids who tbh I'd prefer to have a diagnosis for so that I can get bread etc on prescription & get the eldest boys school to take the issue of glutening seriously...

All help appreciated

Julie

I don't know whether they can test from the UK or not. You can look at their website ... they are in the States.

CC can be a big problem. Even toasters, cutting boards, wooden spoons, body care products (shampoo, etc.). Plus, it takes time to heal ... it doesn't happen overnight.

I hope you get some answers soon.

Thanks for getting back to me again Carla

What should I be looking our for in body care products then? I assume the culprit isnt actually listed as gluten in shampoo etc?? I did see a list of 'safe' toiletries on the site but with being in the UK I imagine I'll be using alot of different brands.

Also, is there any link between low levels of B6 & B12 & celiac? (I ask only because when I was told of my wheat intolerance/allergy last week I was also told I was lacking in both & have seen other posters mention one or other...)

Finally... (sorry!) I take it the gene test simply shows if you have the Celiac gene and not if you are Celiac? I just wonder if I should ask for this & the blood tests for DS1 & 2 when I see the consultant on Friday as a starting point...

Many thanks in advance once again

Julie )

Open Original Shared Link is the only test I know of that can be done while gluten-free.

Are you sure that ALL the gluten is out of his diet? What about your body lotions? Small things like that matter ... when he cuddles or kisses you, or when you prepare his food. Even a small amount of gluten will cause symptoms. I don't know if he's gluten-free or gluten-lite, but it needs to be gluten-free. I'd keep the diet simple for some time till he's better -- meat, eggs, veggies, fruit, rice, potatoes. I would also avoid restaurant food for him, too much of a chance of contamination.

It does take time to heal, so even if you do have all the gluten out of his diet, it still could take time.

Is he off dairy, too? Sometimes that makes a difference in the beginning.

Many thanks for your reply

Yep, my youngest son is off dairy - basically all he eats right now is rice (or rice pasta/bread/milk), 5 fruits, 5 veg, chicken & beef & arrowroot (for making custard/white sauce)... he has multiple food allergies so his diet is v restricted. I suppose he could be getting gluten from elsewhere though - from me like you say, or bath products etc. It wasnt til I found this site (about 2 days ago) that I realized how easily he could be CC

We are in the UK though and I assume that enterolabs is in the US?

I will speak to the allergy specialist next week but I would much rather go with all the right info - for-warned is for-eamed as they say.

Thanks again

Juliex

Hi all

From what I have read it would seem that being gluten free (or at least gluten light!) would have a bearing on the result of the tests for Celiac... just wondering if there are *any* tests that dont require you to be eating gluten at the time of being tested as my youngest DS is pretty much everything free right now lol & still has some symptoms - I would hate to have to put him through a few months of misery in order to get a diagnosis...

TIA

Julie

Hi Mari

My sons not been diagnosed with celiac disease as yet but does have multiple food allergies which we knew about before weaning onto solids as he'd reacted to pretty much everything in my diet while I nursed him.

We see a dietician pretty regularily & were told to start weaning with 'pure' baby rice (some brands have other things added believe it or not), then move onto what are considered the least likely allergenic foods - pear & carrot to start.

From there we moved onto apple, potato, apricot, parsnip, peach, cauliflower, plum & brocolli in that order. We lasted quite a while with these in various combinations (although DS reacted to apple, parsnip & potato unfortunately!) & then moved onto chicken, courgette & banana, followed by beef & butternut squash...

The next cereal we were advised to try was oats (unsuccessfully) @ about 10mths, then corn, then arrowroot, then millet (corn & millet both unsuccessfully) & thats as far as we have got - DS was a year old last week & the dietician isnt concerned at his rather limited diet - 5 fruit, 5 veg, rice (& rice pasta, rice milk & rice bread) & arrowroot, with chicken & beef so that should keep you going for a while!!

HTH

Julie

PS Should add that we were advised to introduce one new food every seven days & to stay away from citrus fruits & berries - or anything with lots of seeds initially... if there is a reaction to any food you withdraw it for seven days before trying anything else new to let the gut heal... even herbs/spices count as new foods... and nothing new should be given in times of illness or when baby is out of sorts as you wont get a true reaction...

Hi all

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 )

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

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

Does anyone have experience with a gluten-free, peanut-free, rice-free (possibly milk-free, as I feel better off it) diet? I have been label reading and cooking a lot already... I suspect that's going to continue.

April

Hi there

I'm very new to all this... just actually registered with the site today but your post struck a bit of a cord with me as I also have a young son with multiple food allergies. At 4&1/2mths after pretty much permanent gassiness, diarrhoea, passing blood, vomiting, fussy feeding, irritability, refusal to lie flat (or lie down at all really!) etc etc DS had +ive allergy tests to wheat, egg & dairy & had reacted to soya. I tried a strict elimination diet - no dairy, wheat, gluten, soya, nuts, shellfish or soya - in order to continue nursing him... unfortunately he was (and is) a very reactive little baby and after over a week of this he was still as bad and he changed him onto a hypo-allergenic formula (Neocate). This was the only way we had 100% control over what he ate as he was obviosuly still have problems with my diet.

Since starting weaning (hes a year now & its a long slow process believe me) hes reacted to potato, parsnip, apple, oats, corn, & millet and I am now strongly suspicious of celiac disease & plan to request testing when I see the allergy consultant next week.

I had read that this tends to run in families so wasnt at all surprised when I went for allergy testing y/day & came up +ive for wheat & dairy myself (they didnt test for gluten) & now its all falling intoplace with my older DS who is constantly complaining of sore tummy, headaches, has diarrhoea & poor weight gain - I always thought he was just a picky eater but now I'm thinking differently & hope to get him tested too.

Anyway, just wanted to say that even on such a restricted diet its impossible to tell what else your son might react to - unless you do a v strict elimination diet introducing one food at a time (starting with the least allergenic like pear/carrot etc - Dr Sears has a good guideline on his website) & cooking everything from scratch. The problem with this is that you'll need lots of dietary supplements & your diet will provide you with no 'comfort'...

HTH & hope things improve for you & your son...

Take care

Julie