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Newly Diognosed And Lost
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9 posts in this topic

can anyone help me gei started isnt glutten in everything  and how do i make sure things are gluiien free

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can anyone help me gei started isnt glutten in everything  and how do i make sure things are gluiien free

There is a great book  by Jax Lowell, (a woman) ,called "the gluten free bible".She was diagnosed later in life and she kind of walks you through the experience. In the back she has pages in different languages that explain your problem when dining out. They are very handy.

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can anyone help me gei started isnt glutten in everything  and how do i make sure things are gluiien free

Not everything has gluten.  I eat:

 

Meat

Vegetables

nuts

Fruits

Wild rice

 

That about summarizes my diet.  Some can eat rice, millet, corn, and buckwheat.

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I mentioned this in another thread, but I suggest going to your local library and checking out any books they have on Celiac Disease.  That will help you better understand things you can and can't eat.  Also get prepared to become an expert food label reader :D

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It seems that way at first: that gluten is in everything! I am fifty days into this and treat myself to all good things that are gluten free. I love almonds and good fruit. I like celery with peanut butter. There are so many good things but not in a box usually! Meat is good: but not hot dogs or things with fillers. If you can meet someone else w celiac and go visit them at their house it is so helpful. A great tip I got was label condiments gluten-free for gluten free or no if not. Good luck! Read all you can ! I read every day instead of tv to learn about gluten free living.

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It's okay to feel overwhelmed.  I think most of us do upon diagnosis.  I know I did.  Sometimes I still do.  This forum is one of the greatest resources for questions you could possibly find so congrats on being here!  

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I mentioned this in another thread, but I suggest going to your local library and checking out any books they have on Celiac Disease.  That will help you better understand things you can and can't eat.  Also get prepared to become an expert food label reader :D

I am a librarian, and I was just diagnosed with gluten intolerance. I am doing my best to get as many celiac/gluten intolerance books in the library. If your library doesn't carry them, ask them to buy some. This is an emerging topic and librarians need to be educated on that!

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    • This is EXACTLY what happens to me. It has twice now and both times was after both glutening episodes but once it was the day after and the other time it was a week and a half. So I'm still not sure if it's related or strange bug bites...

      Did they stop happening when she stopped being glutened? Did you decide they were definitely related? I'm really confused by this and would love to know whether to insecticide my house or....
    • Thankyou both! I was wondering if my high levels left much doubt on the diagnosis. I don't see the GI until the 15th Sep and I don't think I can stand to eat gluten in that time. If he tells me to I will do so after then. After 25 years of symptoms I don't think there is much chance of healing my bowel In a couple of weeks. I'm actually terrified of the damage they might find. But I think I will need the endo since there may be other things going on with me. So great they didn't put your son through the biopsy! Once I have a formal diagnosis I have my kids to worry about also. I can't even stand the thought of my daughter having a blood test. I think she would need to be sedated as she is so fearful and pain sensitive. My son is not yet 2 so I don't think they will test him. I'm feeling so off at the moment. I think I have some anxiety and reflux going on complicating things quite a bit.
    • My son's antibodies were 300. Based on his extremely high levels, his pediatric GI suggested genetic testing instead of the biopsy. Genetic testing can't diagnose celiac on its own but combined with such high levels, the gi dr was confident a positive genetic test would confidently diagnose celiac. He warned that biopsies are small snapshots of the intestine and can miss damage. He said this is an approach used very often in Europe but not as much in the US. What sold me on that approach was the ability to put my son directly on a gluten free diet instead of waiting three weeks for the biopsy, during which time he would continue to eat gluten and feel terrible. I'm not sure if this is more common with younger patients though (our son is two), based on the idea that he's had less time to inflict damage that would show in a biopsy? We are very happy that we immediately started the gluten free diet and chose the genetic testing. Our son got the proper diagnosis and his recent number shows a drop to 71 after only 4.5 months gluten free! Not sure if this helps. Good luck and I hope you feel better soon!
    • We have been off gluten for a while now, and symptoms return when I've allowed gluten full meals… so something still isn't sitting right with me.  Checking with her doc about seeing a pediactric GI although I'm not sure how long that will take since we live in small town America. I know she didn't get at least one of the recommended full panel tests but maybe two, can someone help clarify, or is she missing two? DGP for sure and possibly EMA? And if I understand what I'm reading in other posts that the DGP can be more accurate? Thanks Her blood panel results: Ttg ab iga <.5u/ml ttg igg <.8u/ml aga ab iga <.2 u/ml aga an igg <.7u/ml iga 61mg/dL  
    • I was tested for the full panel, I believe. I had normal values for t-transglutaminase (ttg) igg,t-transglutaminase (ttg) iga, deamidated gliadin abs igg, deamidated gliadin abs iga, and immunoglobulin a qn serum.  
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