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New Here And Need Help! 8-Year-Old Daughter So Many Symptoms Even Though We Stopped Gluten Five Days Ago
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That's what I wasn't sure of, but I just found out that anything over .05 is positive, so....yah....she's tested very high.

thanks, and...geesh!

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Hi Worried Seattle Mom

 

I know that you are focused on your daughter at the moment, and that going gluten free is scary(!) but please consider putting your son on a gluten free diet also. I say this because I have had a lot of food intolerances - Dairy, Egg, fruit, fizzy drink, etc, but after going gluten free for 4 months, I now can eat these things - and I feel better. Even if he does not have Celiac, there is a strong possibility that he is gluten sensitive, (keeping your daughters journey in mind also) and that this is causing his other intolerances. I understand that it can take a year or more for the gut to heal enough to be able to eat these previously not tolerated foods (and it depends on the reaction that he has to them whether you want to risk them) In my experience being Gluten free is a lot more liberating than the other intolerances, and although a bit of a learning curve - if you are already doing this for you daughter, then maybe try for your son too?

 

Also - I completely understand your position with regards to the biopsy and having to continue the gluten with your daughter. However... this is the best chance you will have to have the definitive result that many people with Celiac find helps them stay completely gluten free for the rest of their life. Two more weeks of pain now, could prevent 3 months or more in the future, and even then the result will never be as strong. 

 

Best of luck with your journey - is is horrible when family members are ill:(

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Whew.

So what are they doing for her thyroid? As someone with both celiac and hashis I can attest that the symptoms overlap greatly, and the hashis can make her more miserable than the celiac (after she's gluten-free).

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    • I had a negative biopsy and was still diagnosed with Celiac. My GI ran a bunch of tests looking for the cause of my 15+ years of diarrhea and the only thing that came back positive was the entire Celiac panel. All very high. So he performed an endoscopy with biopsy. The biopsy was negative. So he ordered a genetic test. When that came back as "high risk" he decided a trial gluten free diet was in order. After 8 weeks my symptoms resolved and my antibodies were back to normal. Since then, follow up testing had shown I have osteoporosis. I am a 40 year old male.  So yes, you can definitely still have it and have significant damage with a negative biopsy. 
    • Annual celiac antibody testing is, in my opinion (and based on what celiac researchers have published), is critical, especially for a 12 year old.  Life is going to get harder for her.  Peer pressure is huge (I have a 15 year old daughter), and remaining diet compliant can be tough.   In Dr. Fasano's, Gluten Freedom, he discusses a young patient who became ill in high school after being gluten free for years.  His parents were perplexed.  Dr. Fasano took the young man aside and he confessed that while on a date, he didn't want to bring up his celiac disease.  So, he ate pizza.  He was too embarrassed to tell his parents.   My daughter does not have celiac disease.  She was first tested two years ago.  Since she is symptom free, is not anemic and her other lab work is fine, we'll wait to test her in another year.  It all depends on the patient, but every few years, testing is recommended for all undiagnosed first-degree relatives.   It certainly sounds like your younger children should be screened.   I wish you both well!      
    • Perhaps you should consider asking for a GI referral.  You might just skip the blood tests and go directly to an endoscopy/biopsies while you are still consuming gluten.  It is the "gold" standard for a celiac diagnosis anyway!   Here's the deal with going gluten free.  You can do it.  It costs nothing, but you must give it six months or longer.  You'd need to think like a celiac, but it can be done!  I'll tell you my tale.  My hubby went gluten-free 15 years ago per the very poor advice of his GP/PCP and my allergist.  After a year of mistakes and learning, he got well.  It worked!  Thirteen years later, I was formally diagnosed.  (It was a shock as I was only anemic at the time.)  Hubby would be the first to say that I have had way more support from family, friends and medical.  I must say, it's nice to see those lab results.  It really helped me adhere to the diet in the beginning too.   So, you know your medical situation.  You must do what's best for you!   I hope you feel better soon!  
    • I'm sure going to have a long talk with my doctor.  Then I'll find a new one that will support me and make sure that my daughter and I both have the proper testing done yearly.  
    • also:  glutendude - i don't get it.  shouldn't it be glutenfreedude?  lolz i eat out few and far between.  most of the times i've been glutened it's been eating out.  this weekend i'm getting my bacon cheeseburger on at red robin  i always get my 'good' waitress - lucky, i guess, paula takes good care of me   and i will eat at bonefish but they have a limited 'safe' menu.  look for places that have the 'GiG'  training they know their stuff.  mellow mushroom, melting pot, california pizza kitchen, pf changs are all supposed to be trained that way.  they know to avoid cc and change their gloves, etc.  
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