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New and need advice

Alexandraleighclark1

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Alexandraleighclark1 Newbie
Alexandraleighclark1
Posted

I am very new at this, sorry if this is to much tmi. About 3 months ago i started having problems. At the time I had no stomach pain just direah anything i ate went right through me. I did stool samples sent them in and all came back fine. He then diagnosed me with ibs. So i did some research and took a few things out of my diet but was still having problems. At one point I literally had a blow out. I was stumped had no idea what to do. I felt lost I took gluten out of my diet 100%. Its been about two months being gluten free. Now if I accidently ingest any sory of gluten my body goes in attack more, throwing up and direa until its out of my system and then im completly fine. My labs came back fine for celiac but he said that could be because i've been gluten free so it wouldn't show in the labs. He said I could do a scope but the only treatment would be a gluten free diet and im already doing that, so there isn't a point really. we are thinking celiac because my body goes into complete attack mode if i eat any sort of gluten. Is this how it is with celiac is?  Before all of this I used to experience extreme gas issues to the point of throwing up.  I'm just lost a little bit. Do I have to take supplements? If anyone has any advice it would be appreciated. 

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Jmg Mentor
Jmg
Posted
1 hour ago, Alexandraleighclark1 said:

I am very new at this, sorry if this is to much tmi. About 3 months ago i started having problems. At the time I had no stomach pain just direah anything i ate went right through me. I did stool samples sent them in and all came back fine. He then diagnosed me with ibs. So i did some research and took a few things out of my diet but was still having problems. At one point I literally had a blow out. I was stumped had no idea what to do. I felt lost I took gluten out of my diet 100%. Its been about two months being gluten free. Now if I accidently ingest any sory of gluten my body goes in attack more, throwing up and direa until its out of my system and then im completly fine. My labs came back fine for celiac but he said that could be because i've been gluten free so it wouldn't show in the labs. He said I could do a scope but the only treatment would be a gluten free diet and im already doing that, so there isn't a point really. we are thinking celiac because my body goes into complete attack mode if i eat any sort of gluten. Is this how it is with celiac is?  Before all of this I used to experience extreme gas issues to the point of throwing up.  I'm just lost a little bit. Do I have to take supplements? If anyone has any advice it would be appreciated. 

Hi and welcome :)

Lot's of us did the same as you - cut out gluten then found we needed to be on it for a diagnosis. 

You need to decide if you want to pursue a celiac diagnosis. If you do, then you'll need to 'challenge' your body with gluten for 8-12 weeks prior to blood tests. Otherwise you may get a false negative. 

If you don't want to do this you can continue on the gluten-free diet. It does sound as if you're either celiac or non celiac gluten sensitive. In either case its normal for your reactions to small amounts of gluten to become heightened after you go on the diet. 

More testing info here: https://www.celiac.com/forums/topic/115138-suggestion-faq-intro-post-for-the-diagnosis-board-input-requested/?do=findComment&comment=970127 

 

and info on living the gluten-free life here: https://www.celiac.com/forums/topic/91878-newbie-info-101/

Best of luck!

Matt 

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TexasJen Collaborator
TexasJen
Posted

There are plenty of people that have gone gluten free without the official diagnosis because a gluten challenge would make them too sick.  I think you are the only one that will know if it's right for you.  

There are some benefits to getting diagnosed as either celiac or NCGS. 1. If you are celiac, all of your first degree relatives should be screened for it every 2-3 years.  There is a 1/10 chance they will get it in their lifetime. 2. The diet for celiac is quite a bit more strict than if you have NCGS. I really work to avoid any sort of cross contamination and therefore do not really eat out in most restaurants and don't eat at any parties or friends houses because most people just don't understand that gluten is everywhere (as opposed to my friend with NCGS who will eat off trays at parties and in restaurants and just order off the gluten-free menu)

Let's assume that you do have celiac.... Normally at the time of diagnosis, you would get a bone density scan, blood work for vitamin deficiencies (B12, ferritin, CBC, folic acid, vitamin D) and then antibody testing every year.....

Most people with celiac take only a multivitamin. There are no other special supplements that are recommended but I know a lot of people that take additional supplements based on any symptoms that they have. (for example, I take a fiber supplement because without high fiber bread/cereals, I have a bit of C)

Good luck!

 

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