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More Questions Re 20mth Old Daughter

Guest DONNAJ

By Guest DONNAJ
in Parents, Friends and Loved Ones of Celiacs

Recommended Posts

Guest DONNAJ
Guest DONNAJ
Posted

Hi, you will see my story a little further down (new - asking some questions)

I am wondering if anyone can tell me if I've gotten the right info or not. If my daughter has the gene test done

* she does not have to be on wheat and;

* if she doesn't have the gene this means there is no chance she has celiac?

sorry probably sound like stupid questions but I'm really lost and need to decide what we are going to do with her - my husband is already saying just put her back wheat/gluten free.

how does the prick testing vary from blood test (she already been testing for egg/dairy etc and it's all come back clear??)

we put her back on wheat 2 days ago and she's already started the horrible behaviour and nappies are awful again and up most of last night with her crying. :(

Any advice about tests would be appreciated. Sorry forgot to mention I'm in Sydney, Australia. But anything you can tell me is appreciated. Thanks Donna

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penguin Community Regular
penguin
Posted

Celiac isn't technically an allergy, though it kind of behaves like one. It's an autoimmune disease like diabetes or rheumatoid arthritis. Allergy testing doesn't show celiac.

The Celiac panel tests for specific antibodies related to Celiac, but they are often unreliable in small children.

flagbabyds Collaborator
flagbabyds
Posted

Allergy testing will not show celiac, you need to have the blood testing done. A prick test will not show anything related to celiac.

You can send me and e-mail w/ more questins.

celiacmolly08@mac.com, I don't check PMs so don't send me one.

Jnkmnky Collaborator
Jnkmnky
Posted

She has to be consuming wheat in order for the blood test to have a chance of being accurate. Testing in young children is not reliable. The dietary challenge IS reliable. My tests came back neg for the gene and sensitivity. My dietary Challenge indicated that I CANNOT eat gluten. I am healthy when I don't eat gluten, I am miserable with brain fog, joint pain and endometriosis pain when I eat gluten. My son has Celiac disease and had joint pain, muscle pain, chronic D, BRAIN FOG TO THE MAX, and failure to thrive. BE CAREFUL with a young child with celiac disease or possible celiac disease. The ramifications of messing with those formative years is long term developmental delays due to lack of nutrition caused by inability to absorb nutrition, poor speach, lack of concentration, small stature, weak muscle tone ... not fun.

jaimi alderson Enthusiast
jaimi alderson
Posted

hello!! sorry like always I only have 1 second to write but you are speaking of GENE testing your daughter not just the celiac panel? from the brief research my wonderful mother has done for me thus far the Gene testing does not matter if she is on or off wheat-it is a test of her genetic makeup so that does not vary. I have taken both my toddlers off gluten since my dx 2 weeks ago due to the bad things celiac can cause if there is even a chance they have it I am not going to risk it. so I want to have their blood tested as little as humanly poss as I hate to see them in pain so I am doing the gene testing next week when ped. returns from vacation. if it comes back that they do not have the gene or genes then they will never have to be tested for an abnormal celiac panel again. if it is positive then they will have to at least yearly celiac panels to see if antibodies are showing up thus damage being caused. let me know if you have anymore questions. this is so terribly confusing but my mom is researching this around the clock with my surgeon stepdad so I can figure out the right plan for the kids. I still dont understand it all as I have no time to do my own research!!!!!

TinkerbellSwt Collaborator
TinkerbellSwt
Posted

hello.. I am like jaimi keeping my son gluten free. He is only 11 months old today, but since there is no test besides the panel to do and he has had so many tests already, I am just keeping him gluten free for the first two years. I dont want to look back and see he has damage when I could have prevented it. It would break my heart. I dont want him finding out he is sick like I did at 33 years old.

JakeARoosMommy Newbie
JakeARoosMommy
Posted

I had my son off of gluten for a couple of weeks, when he popped up positive for gluten and milk intolerance. The gluten in the test is ran by seeing if the blood will produce antibodies. The doctor was able to tell us that at that time (the time the blood work was done) that Jake was not experience any current reactions to gluten. We haven't had him formally tested at the GI clinic. That won't be until next week. This has been my experience. I hope that we are all talking about the same test.

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      High DGP-A with normal IGA

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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      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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      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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