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. - knitty kitty replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      16

      Pain in the right side of abdomen

    2. - knitty kitty replied to Heatherisle's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      39

      Blood results

    3. - Heatherisle replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      16

      Pain in the right side of abdomen

    4. - knitty kitty replied to dsfraley's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      12

      9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?

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

    • Total Members
      133,565
    • Most Online (within 30 mins)
      7,748

    Greg C
    Newest Member
    Greg C
    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

    • knitty kitty
      @Heatherisle, I'm so happy that your daughter had her B12 checked! B12 needs all the B vitamins to work properly.  A B Complex should be taken to ensure there are plenty of B vitamins to allow B12 to function properly.  It's very rare to have only one or two low vitamins in Celiac Disease.  B vitamins are water soluble, so any excess is easily excreted in urine.  Tingling in feet and hands is symptomatic of deficiencies in B vitamins like thiamine, Pyridoxine, and niacin. September 19 2025, "Your daughter needs to be checked for Vitamin B12 deficiency as soon as possible!   The nitrogen compounds in anesthesia can precipitate a B12 deficiency resulting in severe depression.  Please have her checked immediately! The nitrogen compounds in anesthesia (both gas and injected anesthesia) bind irrevocably with the Cobalt in Cobalamine Vitamin B12.  This precipitates a B12 deficiency in people with a low B12 level.  This can happen immediately, within days or weeks or months depending on B12 stores.    I've had medical procedures that required anesthesia and been struck down by deep dark depression and uncontrollable crying immediately, and also within weeks of the exposure.  My doctor put me on antidepressants which only made things worse.  Antidepressants don't correct a vitamin deficiency.   Please have her checked for B12 deficiency as soon as possible!"  
    • knitty kitty
      I'm so glad your daughter got her B12 level checked at last!  
    • Heatherisle
      Hi  Daughter finally had her B12 checked and her level was 30, normal range 180-200 so GP has prescribed medication for 4 weeks then further blood test so that probably accounts for how awful she’s been feeling recently. Folate was 2.2 just below the range of 3.0 - 20 so will need folic acid. Think iron levels were borderline but don’t know the numbers. Not sure if it was Ferritin levels they did. History of haemochromatosis in family , my husband has it and other daughter is a carrier. She still has a few more blood tests to be taken including Vit D levels. Has had deficiency in that last year and had 6 month course as had back pain and tingling in feet and hands. Anyway thank you everyone for all your previous replies and help!!!!
    • knitty kitty
      I found some articles that illustrate the immune reaction to casein and gluten. Bovine milk caseins and transglutaminase-treated cereal prolamins are differentially recognized by IgA of celiac disease patients according to their age https://pubmed.ncbi.nlm.nih.gov/19290628/   Gliadin and Casein Metabolism: Synthesis of Gliadomorphin and Casomorphin and Their Biological Consequences https://www.researchgate.net/publication/397908713_Gliadin_and_Casein_Metabolism_Synthesis_of_Gliadomorphin_and_Casomorphin_and_Their_Biological_Consequences   Effects of milk containing only A2 beta casein versus milk containing both A1 and A2 beta casein proteins on gastrointestinal physiology, symptoms of discomfort, and cognitive behavior of people with self-reported intolerance to traditional cows’ milk https://pmc.ncbi.nlm.nih.gov/articles/PMC4818854/#:~:text=Results,lactose tolerant and intolerant subjects.   Casomorphins and Gliadorphins Have Diverse Systemic Effects Spanning Gut, Brain and Internal Organs https://pmc.ncbi.nlm.nih.gov/articles/PMC8345738/   Brain Opioid Activity and Oxidative Injury: Different Molecular Scenarios Connecting Celiac Disease and Autistic Spectrum Disorder https://pmc.ncbi.nlm.nih.gov/articles/PMC7407635/  
    • Mari
      Ijmartes71 I  son't think you are crazy by any psycoligical s=defination but you are obsessive. you may have considerable brain fog  , a problem that affects celiacs and many other people. . With this obsession you have abd being braun dogged you arw not abke to take any advice people are giving you to help you. To take advice you need to reduce your anxieties abd think more clearly. .Stop taking your herbs for at least one week because some of them will have side ellectsif you take them too long. You can add them back if you don't notice any good changes. Be more careful about being strictly gluten free.  
×
×
  • 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.