Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

I'm so drained


1Newtothis

Recommended Posts

1Newtothis Newbie

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. 


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

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.  

Open Original Shared Link

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

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/

 

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - cristiana replied to colinukcoeliac's topic in Gluten-Free Restaurants
      6

      What should I expect from a UK restaurant advertising / offering "Gluten Free" food

    2. - RMJ replied to colinukcoeliac's topic in Gluten-Free Restaurants
      6

      What should I expect from a UK restaurant advertising / offering "Gluten Free" food

    3. - knitty kitty replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      14

      Pain in the right side of abdomen

    4. - trents replied to colinukcoeliac's topic in Gluten-Free Restaurants
      6

      What should I expect from a UK restaurant advertising / offering "Gluten Free" food

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,480
    • Most Online (within 30 mins)
      7,748

    radster47
    Newest Member
    radster47
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
    • cristiana
      Hi Colin I share your frustration. My coeliac disease was diagnosed in 2013 and it took some years for my  TTG levels to settle to normal levels in  blood tests.  I had to make a few significant changes at home to make sure our house was as gluten free as possible (I share a house with gluten eaters) but time and time again I found I was glutened (or nearly glutened whilst eating out  - like regular bread being served with a gluten-free meal ).  Even eating in chains that Coeliac UK were recommending as safe for coeliacs.  So I gave up eating in restaurants for a while.  My blood tests normalised.  But here's the thing:  the lowest my TTG readings ever got to were 4.5 (10  and under being my local lab's normal levels) and now that I am eating out again more regularly, they've gone up to 10 again.  I am quite convinced this gluten is coming from exposure whilst eating out.  Small levels, that don't make me violently sick, but might give me a mild stomach upset.  My next coeliac blood review is in September and I mean to give up eating out a few months before to see if that helps my blood results get back on track. It seems to me that there are few restaurants which really 'get it' - and a lot of restaurants that don't 'get it' at all.  I've found one restaurant in Somerset and a hotel in East Sussex where they really know what they are doing.    The restaurant in Somerset hardly uses flour in any of their dishes; the hotel in East Sussex takes in trainees from the local college, so they are teaching best standards.   But it has taken a lot of searching and trial and effort on my part to find these two places.  There are certainly others in the UK, but it seems to me the only real way to find them is trial and error, or perhaps from the personal recommendation of other strict coeliacs (Incidentally, my coeliac hairdresser tells me that if a Michelin star restaurant has to have a separate food preparation so she has never been glutened in one - I can't say I've ever eaten in one!) For the rest, I think we just have to accept that gluten may be in the air in kitchens, if not on the surfaces, and there will always be some level of risk wherever one dines, unless the restaurant cooks exclusively gluten free dishes. Cristiana  
    • RMJ
      Hopefully @Cristiana will see this question, as she also lives in the UK.
    • knitty kitty
      @Theresa2407, My Non-Alcoholic Fatty Liver Disease (NAFD), now called Metabolic Dysfunction-Associated Steatotic Liver Disease (MASLD), cleared up, resolved, after supplementing with Thiamine B1 and Riboflavin B2.  "Specifically, higher intakes of vitamin B1 and vitamin B2 were negatively associated with the risk of NAFLD. Consequently, providing adequate levels of Vitamin B1 and Vitamin B2 in the daily diets of postmenopausal women could potentially serve as a preventive measure against NAFLD." Association between dietary intakes of B vitamins and nonalcoholic fatty liver disease in postmenopausal women: a cross-sectional study https://pmc.ncbi.nlm.nih.gov/articles/PMC10621796/ High-dose vitamin B1 therapy prevents the development of experimental fatty liver driven by overnutrition https://pmc.ncbi.nlm.nih.gov/articles/PMC7988776/
    • trents
      Welcome to the the celiac.com community @colinukcoeliac! I am in the USA but I don't think it is any different here in my experience. In some large cities there are dedicated gluten free restaurants where only gluten free ingredients are found. However, there are a growing number of mainstream eatery chains that advertise gluten free menu items but they are likely cooked and prepared along with gluten containing foods. They are just not set up to offer a dedicated gluten free cooking, preparation and handling environment. There simply isn't space for it and it would not be cost effective. And I think you probably realize that restaurants operate on a thin margin of profit. As the food industry has become more aware of celiac disease and the issue of cross contamination I have noticed that some eateries that used to offer "gluten free" menu items not have changed their terminology to "low gluten" to reflect the possibility of cross contamination.  I would have to say that I appreciate the openness and honesty of the response you got from your email inquiry. It also needs to be said that the degree of cross contamination happening in that eatery may still allow the food they advertise as gluten free to meet the regulatory standards of gluten free advertising which, in the USA is not more than 20ppm of gluten. And that is acceptable for most celiacs and those who are gluten sensitive. Perhaps you might suggest to the eatery that they add a disclaimer about cross contamination to the menu itself.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.