Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

My Stubbourn Teen


MycasMommy

Recommended Posts

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,768
    • Most Online (within 30 mins)
      7,748

    Steve Griffin
    Newest Member
    Steve Griffin
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      The genetic testing results you provided indicate that your child carries two copies of the HLA-DQ2.5 beta chain (DQ Beta 1 *02:01, *02:01), which is a high-risk genetic marker for celiac disease. However, the alpha chain (DQ Alpha 1 *05:01, *05) is only partially present, as HLA-DQ2.5 typically requires the alpha chain *05:01 paired with the beta chain 02:01. Since your child has two copies of the beta chain (02:01) but only one full *05:01 alpha allele (the other appears truncated as *05), this suggests they are heterozygous for HLA-DQ2.5 rather than homozygous. The term "permissive for celiac disease" means your child has genetic susceptibility but not necessarily the highest-risk genotype (homozygous DQ2.5). Since celiac disease development also depends on environmental triggers and other factors, further testing (such as antibody screening or biopsy) may be needed to confirm a diagnosis. Consulting a genetic counselor or gastroenterologist can help clarify these results and next steps.
    • Jenny (AZ via TX)
    • DebJ14
      As my doctor said, you don't have to eat breakfast food for breakfast.  I may have a leftover piece of chicken and left over squash or eggs or I am actually more likely to skip breakfast as I do intermittent fasting.  In that case I eat lunch around 11:30 and have some guacamole and a salad with chicken or tuna.  For dinner I have pork, shrimp, chicken, lamb, or turkey with half a baked sweet potato and some broccoli, green beans, beets, carrots or cauliflower.  I do not eat any grains on the advice of my doctor.  I do not eat commercially processed products, even if they say they are gluten-free.  I make Warrior Bread every few weeks.  It has no yeast and contains almond flour and dried sweet potato.  Very tasty too.  A good book to help in this regard is No Grain, No Pain by Peter Osborne.  Thankfully, I can eat coconut and nuts and use those flours in baking and also use nut milks in cooking.  Since I am allergic to chocolate and vanilla, lemon is my go to flavor for something sweet.  My migraines totally disappeared once I went gluten and casein free.  I can occasionally eat certain high fat cheeses that are low in casein, as well as grass fed butter.  I use lots of Organic Olive and Avocado oil. The problems I thought I had with nightshades went away when I went fully organic.  And, the rest of my issues went away by avoiding the foods I tested positive to as well as avoiding all grains. I will be the first one to say that it is a very expensive way of eating, but thankfully we can afford to eat that way.  The good news is that I take no prescription meds at age 72.  At 54 before diagnosis, I was a mess and on a boatload of pharmaceuticals.  
    • lmemsm
      With that many foods removed from your diet, what do you eat?  I also have histamine issues and migraines so that takes out certain trigger foods and high histamine vegetables.  Have allergies to coconut and issues with nuts so those are out.  I'm beginning to think I may have to remove dairy and some of the grains beyond wheat to get allergies under control.  Just having so many issues figuring out what to make at meal times.  What's a typical breakfast look like for you?  Thanks.
    • knitty kitty
      @Healthforme, No prescription needed for thiamine hydrochloride, Benfotiamine, and TTFD (Tetrahydrofurfuryl Disulfide).  They are available over the counter.   Thiamine Mononitrate is not recommended because the body doesn't absorb or utilize it well.  
×
×
  • Create New...