Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Feel Worse? Please Help


ChrisL

Recommended Posts

ChrisL Newbie

I am writing this for my girlfriend who has recently been diagnosed with Celiac. (about 3 weeks). Her symptoms are fatigue, numbness, chills, blurry vision, brain fog. I have noticed those to be relatively common symptoms of Celiac before diagnosis.

She has gone Gluten Free and the past few weeks have been awful with symptoms. It seems like every symptom has magnified mulitple times without Gluten. I have been chalking it up to the theory of "It gets worse before it gets better" but has anyone had this happen? Also, right after she eats, (which is Gluten Free) she feels dramatically worse. Is this common in the first weeks of a gluten-free diet?

Any info and help is much appreciated.

Thanks,

Chris


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



Celiac.com Sponsor (A8-M):



Lisa Mentor

Hi Chris and welcome!

If your girl friend has intestinal damage due to Celiac, it will take some time to heal. Any food will be an issues, gluten free or not.

Be as cautious as possible, eat simply with meat, fish, fresh veggies (cooked well), rice and potatoes. Limit seasonings to salt and pepper until you get the hang of label reading.

She should have her own toaster, and pots and pans should be free of scratches that could hide previous gluten. Meds, vitamins, lipstick, lotions or anything that can get into her mouth should be checked.

With chills and blurry vision, she might be coming down with a bug or the flu. But, it would be worth getting a full metobolic panel done to make sure her thyroid is in good working order or there are no difficiencies.

It's great that she has you in her corner. It's not easy at first, but a good support team, sure makes it easier. Cheers to you!

sadeew Newbie

Hi Chris~

I felt awful on and off the first 2 weeks I quit gluten.

I recently read that up to 80% of people gpoing gluten-free can experience withdrawal. I had a good 5 days of feeling more tired than I had and I broke out all over, like 80 pimples, I got headaches and was super grumpy.

I am now coming out of it and feeling better than before.

Make sure your girlfriend drinks LOTS of water. Green smoothies would be good, too. I felt so miserable I couldn't believe it because I thought I was supposed to feel better and I definitely did not!

I bet she is having withdrawal. It should clear within 2-3 weeks.

Best of luck to you both.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,160
    • Most Online (within 30 mins)
      7,748

    Elaine Gilbert
    Newest Member
    Elaine Gilbert
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.7k

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • mariamccl
      Hi, 25f who recently had a endoscopy procedure to diagnose celiac disease. Mum and uncle are both diagnosed celiacs. I've had symptoms over the past year - headaches that have become debilitating and frequent, feeling faint and nauseous with high heart rate, diarrhea and constipation, anemia, and recently my periods have become almost non existent. My doctor sent me a letter yesterday saying this " biopsies from the duodenum show some very mild features that could be in keeping with celiac disease but also could be due to other causes". I am waiting on an appointment to see him in the clinic to discuss this but in the meantime I wanted to check if anyone else has experienced this? I was eating plenty of gluten before my camera test and for the past 2 weeks have completely cut it out of my diet and I'm seeing changes in my bowel movements for the first time in my life! Headaches, dizziness etc are still there but maybe it takes longer for them to go away? Any help would be so appreciated -  I feel so lost in this whole process!! 
    • trents
      Did your symptoms improve after going on a gluten-free diet?
    • Scott Adams
      Thank you for sharing your genetic test results and background. Your results indicate you carry one half of the DQ2 heterodimer (DQA1*05), which is associated with a very low celiac disease risk (0.05%). While most celiac patients have either DQ2 or DQ8, these genes are also present in people without celiac disease, so the test alone doesn’t confirm a diagnosis. Since you’ve been gluten-free for 10 years, traditional diagnostic methods (like endoscopy or blood tests) would not be reliable now. If an official diagnosis is important to you, consider discussing a gluten challenge with your doctor, where you reintroduce gluten for a period before testing. Alternatively, you could focus on symptom management and dietary adherence, as your gluten-free diet seems to be helping. Consulting a gastroenterologist or celiac specialist could provide further clarity.  Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      @cvz Thank you for sharing your daughter’s story. It sounds like she is managing multiple complex conditions with great care and diligence. It’s encouraging to hear that she is compliant with her gluten-free diet and that her Addison’s disease symptoms are under control. The addition of electrolytes seems like a thoughtful suggestion, especially given her fluid intake. It’s also reassuring that she hasn’t shown noticeable symptoms from accidental gluten exposure, though it’s understandable how challenging it can be to monitor for such incidents. The unexplained high lipase levels are intriguing—perhaps further investigation or consultation with a specialist could provide more clarity. Wishing you both continued strength and success in managing her health. Please keep us updated on her progress!
    • Kj44
      Hello I received this in a genetic lab test I requested from my provider.    The patient is positive for DQA1*05, one half of the DQ2 heterodimer. The celiac disease risk from the HLA DQA/DQB genotype is approximately 1:1842 (0.05%). This is less than the 1% risk in the general population. Allele interpretation for all loci based on IMGT/HLA database version 3.55 HLA Lab CLIA ID Number 34D0954530 Greater than 95% of celiac patients are positive for either DQ2 or DQ8 (Sollid and Thorsby, (1993) Gastroenterology 105:910-922). However these antigens may also be present in patients who do not have Celiac disease.   Some background, I have been eating gluten free for about 10 years now. I have never had an official celiac diagnosis due to endoscopy and labs tested after I had already been eating gluten free for over 1 year. I was constantly sick and told you slowly remove foods and see what effects my symptoms. I have also come to realize that I have other symptoms of celiacs and recently requested the genetic testing shown above.    I am looking to see if anyone has other recommendations for testing or just to clarify the results for me as I feel the official diagnosis could be helpful but I am not positive that it is even true for me. 
×
×
  • Create New...