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My Stubbourn Teen


MycasMommy

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MycasMommy Enthusiast

Gah, Its killing me.  Maybe I should have placed this down in the parents section but heck, she will be an official adult this summer.  I am listening to her breathing while she types at her computer. She has an appointment on March 5 for a Celiac panel so I am glutening the heck out of her. she is SO SO SICK and she wont admit it. She is sneezing 30-40 times a day, her eyes are sunken in, her skin is turning yellow, she is severely tired ALL the time, her eczema is going insane.  She is fine with going to get the blood test, but when I told her if the blood test comes back positive she would go for a biopsy, she went a bit crazy and stated NO, and YOU WILL MOT MAKE ME! She is serious. She is also a great kid.  I have never had a problem teen. *sighs*  I sit here and also think of the time she came home for girl scout camp and we THOUGHT she had poison ivy on her hands, but no.. the doctor said it was just some bad eczema.  Now that I know and have seen what DH is.. i am just SO MAD! THAT IS WHAT WAS ON HER HANDS.  It was so bad the top of her hands and knuckles were blistered and bleeding and we had to coat them in all kind of substances day and night and cover the "goop" , as we now call it with latex gloves.  It has happened a few times since then. I am just so angry, angry at the doctors for not putting things together, (she also has severe exercise induced asthma and a few other symptoms that require care,   No one put it together. and now ...since SHE is so adamant about not being put to sleep for a biopsy.. she is right.. I cannot MAKE her. I never want her to be as sick as I was/am.  Living life in fear of food and vomiting is awful. So many other ways I COULD have been healthy if I had only known.  She knows all about this.  She sees how suck I have been and how violently ill i get if I get glutened. I guess there is not a real question here.. just have to rant somewhere.


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nvsmom Community Regular

Hugs.

A positive blood test s often enough to diagnose celiac disease. I skipped the biopsy myself yet have no doubt hat I have celiac disease based on my test results.

Biopsies can be done while awake, but it is not very pleasant from what I have heard.

Those with dh do not always test accurately on the blood tests. A biopsy of the area beside the rash is the best way to diagnose dh.

You can always try implementing the gluten-free diet for a few months and keep a close record of any changes. A doctor's stamp of approval is not needed to go gluten-free. Gluten is not needed in any diet, it is just a food of convenience.... Which may make it tough for an independent teen to eat gluten-free if she is against it.

Hang in there.

MycasMommy Enthusiast

I have tried to get her to go gluten free.  Just to see if she would get better.  She is aware of how ill I am and have been over it. She has read all of what Ive sent her.  She did go gluten free at home.  She is 17 though and she has a job and a life and I am not her master. She would buy Cookies at the cookie corner, and snacks at the grocery store after work. She does not lie about it or anything. the only way she will actually go gluten free is to hear from a doctor that it is actually hurting her.  EVEN though she is SO sick right now from all the extra gluten I have been laying on her.. she still denies it has anything to do with gluten. haha  THIS from a child that graduated high school at 15!

 

She does not currently have any skin out breaks ( There is so much gluten she may have one at any moment though).  I did not know that about DH and the blood test. :S great... :(  I think I will just have to have a private talk with the doctor about how he needs to emphasize to HER about the biopsies. 

 

I just hate seeing my baby so ill these past few weeks while I over gluten the heck out of her on purpose.  It must be so much harder for parents that have to do it to their little ones.

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    • trents
      Most doctors don't even order anything besides the tTG-IGA and maybe total IGA when doing blood testing for celiac disease. The EMA is the very first celiac blood antibody test that was developed and has largely been replaced by the tTG-IGA which is less expensive to run in the lab. My understanding is they both pretty much check for the same thing. The IGG tests are second tier tools that are less specific for celiac disease. It is not at all uncommon for the EMA and the tTG-IGA to disagree with one another. We frequently see this on the forum. I do not know why. Please realize that doctors typically run a number of tests when diagnosing a medical condition. If there was one test that was foolproof, there would not be a need for other tests and other testing modalities. It works that way with many or most diseases. 
    • lizzie42
      But yes seeing all those negatives does give me a bit of doubt! I feel confident but those results give me a seed of doubt. Especially since it's a lifelong diet for him! 
    • lizzie42
      When I originally posted I hadn't talked to the pediatrician yet and didn't realize about the budosinide. Now I feel pretty confident. I was concerned that all of the tests didn't come back positive - that seemed kind of ambiguous to me. I didn't realize that was common. Do a lot of people on here have a positive tTG but negative other tests? I thought the EMA was pretty "gold standard."  And yes I do now wonder about the asthma! I hope being gluten free will improve that! 
    • trents
      @lizzie42, So, I'm confused with what you are uncertain about. Do you really have any doubt that your 5 year-old son has celiac disease? Is it because he isn't exhibiting anemia and the rash as did your daughter? The genes are certainly there and the antibody testing certainly indicates celiac. And given the fact that he was on a reduced gluten diet and on a steroidal medication (which would likely suppress immune responses) do you really have any doubt? If you can't afford the GI consult with endoscopy/biopsy, why would you consider a gluten challenge after removing the remainder of the gluten from his diet? Have you considered that his asthma and "sickness" may be tied to celiac disease?
    • lizzie42
      These are my sons results. My daughter was high positive on everything and maxed out the tests in addition to being anemic, bad rash, etc.  Yes, he has been eating mostly gluten free (not completely). He was also on a high dose of budosinide at the time of testing due to some asthma and sickness. I didn't realize that affects the results.  This test along with my daughter being so sick with it prompted the pediatrician to diagnose him. We can always do a gluten challenge in the future. We will do that with our 1 year old. We will have her eat school lunch when she goes to prek and then test after a couple months. 
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