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I'm so drained

1Newtothis

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1Newtothis Newbie
1Newtothis
Posted

Hey Guys! On May 9th my doctor said I tested positive for the rare celiac gene. Told me to go gluten free for a month. So on the 9th I started. I FELT AMAZING!! Until the 22 of May. For the last week I have literally felt like death. I'm so drained. Like so drained I feel so weird and just completely off. :( is this normal. 

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cyclinglady Grand Master
cyclinglady
Posted

Welcome!  

Yikes, first I would suggest that you consider a new doctor.  Your doctor gave you some pretty bad advice biased on your posting.  

The celiac gene is common.  Some 30% or more of the population carries the genes that could develop into celiac disease.  Are you sure it was not an antibodies test?  Telling you to go gluten free for a 30 day trial is another huge error.  Often they takes months to years for a celiac to recover.  A celiac is diagosed by blood tests and small intestinal biopsies obtained via an endoscopy.  There are times when an endoscopy is skipped because if financial reasons, too ill or long wait times.  

Learn more at the University of Chicago's celiac website which is very informative and well-recognized.  

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1 hour ago, 1Newtothis said:

Hey Guys! On May 9th my doctor said I tested positive for the rare celiac gene. Told me to go gluten free for a month. So on the 9th I started. I FELT AMAZING!! Until the 22 of May. For the last week I have literally felt like death. I'm so drained. Like so drained I feel so weird and just completely off. :( is this normal. 

 

Ennis-TX Grand Master
Ennis-TX
Posted

I second cycling lady here, you should not go gluten free unless your doctor confirms you have celiac disease via the blood test and a biopsy. You need to be eating gluten for the testing to be accurate so a 30 day trial based on the gene is a REALLY bad idea, getting back on gluten for the testing is a nightmare once out of your system.

Also going gluten free, what are you eating? If your eating just a bunch of gluten-free foods that are processed like the pre made breads, foods etc. your on the wrong path. Those are normally non enriched and more like junk food/comfort food. You need to eat a whole foods diet, of various greens, meats, nuts, seeds, (fruit if you can have it and sweet potatoes). etc. Doing this will boost your healing and you and introduce some of those processed foods later on sometimes.

If you have celiac disease then your intestines are probably damaged and you will need to supplement some nutrients, we all have common ones like magnesium, iron, b-vitamins, folate, potassium, D etc. and you should talk to a good doctor about what your missing. The whole out of it things sounds like b-vitamins to me.

Another point is going gluten free, you have to be careful for CC if your a celiac, after removing gluten re exposure to gluten makes your symptoms MUCH worse, and the tend to change and evolve in addition. Be sure to check the Newbie 101, your pretty much have to replace most of your cookware, condiments, etc. https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

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    • trents
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      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
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      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
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