Wheat or Gluten or what can be?
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Category: Support
Forum Name: Reflux and Allergy Support
Forum Description: Struggling with a refluxy baby? Looking for tips to deal with allergies? Share your experiences here.
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Topic: Wheat or Gluten or what can be?
Posted By: soph
Subject: Wheat or Gluten or what can be?
Date Posted: 18 December 2008 at 6:46pm
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Had anyone experience this?
When my DD was tested positive for wheat and soy allergy, I took her off wheat and soy to see if did any benefit. Meanwhile my DS2 show badly eczema flare up to Soy when I introduced him to soy to coming off breastfeeding at 14months, I took him off soy too. Having found harder to get bread without soy and most soy free bread are wheat free too. So it was easy for me to feed both of them on wheat and soy free bread. It was during that 2 weeks, I notice the benefits to DS2 to have no wheat, his eczema clearing up more. Since then DS2 and DD have been on wheat and soy free diet as well as their usual allergies. Saw paed dr last week, she want to know why I took him off wheat and I explained his eczema was clearing up. She told me there is no allergy (I did actually thought it is intolerance, not allergy!), order him back onto wheat and gave me stronger steriod instead (!!) Honestly I gave in as I was in state and getting fed up. Since both children went back on wheat, they have been having diarrhoea - very running and explosive poo, that can leaked out of DS2's nappy  and very smelly, then pin dropped that was reasons why I did continue no wheat diet for both of them after 2 weeks trial. I honestly can't remember when did last times my DS had good poo since he was on solids before took him off wheat.
Today they had couscous with sundried tomatoes for lunch, four hours later both of them got diarrhoea espcially DS2 just done it on the carpet, just like explosive pop out onto carpet without warning, had to shower him again. DD's poo was also very running in the toilet.... Now is that wheat intolerance or is that gluten intolerance or what do you think?? Thank you, I am thinking about taking them to GP tomorrow but I want to be prepare with some suggestion to GP. |
Replies:
Posted By: soph
Date Posted: 18 December 2008 at 6:47pm
| Oh yes while they were off wheat, friends remarked how well they look and since when they went back on wheat, same friends remarked how tired they look. I didn't tell them what happened... |
Posted By: MrsMojo
Date Posted: 18 December 2008 at 7:10pm
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It certainly sounds like a gluten intolerance to me, which can't be diagnosed with the usual allergy tests. From what I understand you can get a wheat allergy but not a wheat intolerance and you can have a gluten intolerance (coeliac disease) but not a gluten allergy. I got this info from the MFD which is compiled by Auckland hospital nutrition services and NZFSA. It's up to you what to do. There are 2 types of blood test that can be done but neither are definitive. The most common measures the gliadin in the blood and can tell you if your child is likely to be coeliac but false negatives are common (I got a negative result with this test shortly before I was diagnosed), the other newer test is a gene test, it doesn't diagnose coeliacs but can tell you if your child carries the gene, if they don't then there's no way they have or can ever develop coeliacs but if they do then the chances of them having it now given their symptoms is very likely. If you want them to be properly diagnosed with an intolerance to gluten you need to regularly feed them gluten until at least 4yo when there will be enough damage to their stomachs for a endoscopy and biopsy to reveal the intolerance. Alternatively (and this is my preferred option) you remove them both from gluten as you'd already done and don't reintroduce it even if a paed who doesn't know your kids as well as you do tells you to. Good luck with the doc I hope he/she is more accepting that you know your children and know when something's not right with them. -------------  
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Posted By: busymum
Date Posted: 18 December 2008 at 7:48pm
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The best thing about having it properly diagnosed is that they always have that to fall back on in the future, and won't be so tempted to cheat on the diet. Because GF for life is not fun!
I understood the same as Jo, that the options are only gluten intolerance (which can or cannot be coeliacs disease) and wheat allergy. Either can be picked up on a blood test provided there is enough gluten/wheat in the body to react to it. Unfortunately for everyone that is a different level. Because you are having such strong indications of something wrong, I would be inclined to (following the gp visit/blood test) keep them off gluten until some time in the future when you feel brave enough to do a diet test. If you do one of those, introduce gluten but not wheat for long enough to get reactions, that will ensure there is little wheat in the system so you can safely "diagnose" gluten intolerance vs wheat allergy. -------------  |
Posted By: soph
Date Posted: 18 December 2008 at 8:59pm
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Thank you for your help.
Both of them did had allergy test in september on wheat & Soy via skin prick, DD showed both positive but not "big enough" to show serious allergy while DS2 showed both negative. So either he has false result or more toward gluten intolerance? And is poss for child to be allergic to wheat as well as gluten intolerance? (thinking about DD) Can GP authorise to do blood test on Gluten, instead of pead dr? |
Posted By: MrsMojo
Date Posted: 18 December 2008 at 9:20pm
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Yes, it's entirely possible to have an allergy to wheat and a gluten intolerance. The GP will definitely be able to authorise it (my GP referred Michaela for the gene test when she was a baby, unfortunately she carries the gene so now it's a waiting game to see if coeliacs is triggered). -------------
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Posted By: soph
Date Posted: 18 December 2008 at 9:25pm
Thank you very much for your help 
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Posted By: soph
Date Posted: 19 December 2008 at 4:56pm
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Saw GP this afternoon, he been dealing with DS2's problems on/off for last 6months, so he was ideal to talk to about his current problems because he know DS2's history and the problem I am having with paed dr....
I told him everything from scratch about wheat situations and he agreed about gluten's symptoms presents in DS2. He actually thought DS2 is too young to be test till he did re-read up on Gluten senstivitiy and decide to test him on FBC, LFT, Ferritin/Iron and IgA antibody, to see if he got Gluten sensitivity. He actually told me ignore pead dr's advice, get him off wheat if he doing better without it! Then try again in 6months just in case he may outgrow the wheat/gluten problem if test is negative, if not, retest again. At least I got GP on my side this time instead of pead dr! |
Posted By: MrsMojo
Date Posted: 19 December 2008 at 6:06pm
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Great. Sounds like you have a very good GP. -------------
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Posted By: busymum
Date Posted: 19 December 2008 at 7:52pm
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Posted By: soph
Date Posted: 24 December 2008 at 12:50pm
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update: took DS2 to medlab for blood taken on monday then today I took DS1 to same GP for treatment of his skin infection.
I told GP that I have took DS2 to medlab for blood test and he told he know because got some results back quick. Because he knew I used to work in medical lab, he was very careful to tell me some results 
All I know so far IgG, Ferritin, B12F tests not back yet, FBC is normal but LFTs is raised abnormal (not sure which ones as there are 4 of them in LFTs) which require further tests in new year (so it is not urgent, so that mean not serious, phew). Will see him again in new year... Merry Christmas and Happy New Year from all of us! x |
Posted By: soph
Date Posted: 09 January 2009 at 4:54pm
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Update: Saw dr today for all test results, all show normal for all tests except ALP, (one of LFTs test) show very high raised at >400 (or >4000?) so he will be referral to have further test on ALP levels - electroposis test of ALP?
However IgG test show negative for coelic disease  he will need retest in 6 months to keep check his IgG levels and suggested DS2 may have gluten Intolerance instead.
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Posted By: busymum
Date Posted: 09 January 2009 at 9:51pm
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I'm not sure what ALP is but it's all sounding promising in terms of figuring how who is intolerant to what. (I presume you made sure DS1 (neg for coeliac disease - did I get the right child?) was eating a regular amount of gluten at the time of and leading up to the blood test.) ------------- |