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Recenly Diagnosed & Somewhat Struggling

yalebabyrn26

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yalebabyrn26 Newbie
yalebabyrn26
Posted

I was diagnosed with celiac may 20th. I had my follow up today to see how i was doing with the gluten free diet. i was thinking i did well, but according to my dr, i have room to grow. my antibodies in march were 75. my labs from last week were 9 but apparently by now should have been undectable at less than 5. i thought that would have been pretty well but my dr. thinks that there must be some hidden gluten in my diet. i swear i read all the labels and make sure if i go out i order gluten free and let them know of my allergy. does anyone have any suggestions as to where more hidden gluten might be?? also i had 2 months from my diagnosis til my nutritionist appt which was totally useless. she told me that she didnt believe that celiac was genetic or that cross contamination affects us?!?!?! totally against everything i had learned before my appt. ive been trying to do all i can and all my friends/family have been great to help but today was a little bit of a blow. any thoughts??? any and all will help! thanks!

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SuperMolly Apprentice
SuperMolly
Posted
  On 10/6/2010 at 2:15 AM, yalebabyrn26 said:

...there must be some hidden gluten in my diet. i swear i read all the labels and make sure if i go out i order gluten free and let them know of my allergy. does anyone have any suggestions as to where more hidden gluten might be??

You have come to the right place! It helps so much to talk this stuff out with others who live with it every day.

Do you still have gluten in your house? Cross contamination is a tricky, serious issue. Think about toasters, hard to clean corners in cake pans, shared peanut butter or butter with gluten traces, etc.

Also when going to restaurants look into all the possibilities of cross contamination (cc). Are they making the fries in the same vat as the breaded chicken or onion rings? Most people don't know what gluten is, let alone how to make food for someone with celiac disease!

SuperMolly Apprentice
SuperMolly
Posted
  On 10/6/2010 at 2:15 AM, yalebabyrn26 said:

my nutritionist appt was totally useless. she told me that she didnt believe that celiac was genetic or that cross contamination affects us?!?!?!

That is just crazy! Cross contamination is a HUGE issue for those with celiac disease. Just ask any one here!

Kim27 Contributor
Kim27
Posted

It has only been a few months. Even if you are doing every single thing right, it's not definite that your antibodies would be undetectable by now. That big drop is a good sign. I went from 168 to 23 in 4 months and my GI doc was thrilled. I think you're on the right track, don't let the doc discourage you, just keep up the good work.

kayo Explorer
kayo
Posted

You have come to the right place!

Another place gluten can be hiding is in your lotions, shampoos and cosmetics.

First off I think those numbers look great. It's only been 6 months and it can take us much longer than that to heal and recover. From a 75 to a 9 shows great improvement.

Your nutritionist is way off. Makes me wonder what her credentials are. Celiac is genetic and cross contamination is a huge issue. Do you have the option of changing nutritionists? If so look for someone who has experience with Celiac and gluten-free living. My nutritionist has Celiac which makes things so much easier.

Keep reading here, you'll finds lots of good advice and ideas.

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