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

Thoughts on my first few weeks gluten free


Bananasbananas

Recommended Posts

Bananasbananas Apprentice

Hi again everyone. I’ve been gluten free for 27 days now, and was officially dx late March with celiac. I received the diagnosis from a nurse over the phone, and my follow up isn’t til late June. I’ve been doing pretty well with everything but have so many questions. 

When I got my blood work back in December, I upped my gluten intake quite a bit— last time having all my favorite Christmas cookies, special holiday beers etc. I developed a really itchy rash around my mouth and nose bilaterally, which is still kicking around. Should I have this checked by a dermatologist or give it some more time to potentially respond to the gluten-free diet?

At the same time in December, I really relaxed my workout regimen. I have felt for a few years now that I’ve been making less progress than the effort I was putting in. My iron has been an issue since early childhood, and I’ve been on supplements but it doesn’t make much difference. Now that I’m on the diet, I am trying to get back into a workout routine, but I’m left feeling very achy and fatigued after. So I’m wondering if I should just keep taking it easy and hold off on higher intensity workouts? 

The last thing I’ve really been struggling with is brain fog. I have an intellectually demanding job, and even the most basic words can be tough for me to recall. My focus has been terrible. Outside of work, I find myself starting different projects and never completing them, jumping from one hobby to the next in quick succession. On top of that, I’ve been pretty emotional and feeling like I just do not know how to properly care for myself. I feel like a complete space case. Are there supplements I could take to remedy this?

sorry in advance for the long post. It is so nice to have this forum to seek advice. My family has been supportive, but they usually just say “it’ll get better, you’re doing your best..” etc without really knowing how to help. And I’m really eager to get back to my doctor, but he is a gastroenterologist and really only seemed interested in my GI symptoms the first time around.


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



Celiac.com Sponsor (A8-M):



kareng Grand Master
21 minutes ago, Bananasbananas said:

Hi again everyone. I’ve been gluten free for 27 days now, and was officially dx late May with celiac. I received the diagnosis from a nurse over the phone, and my follow up isn’t til late June. I’ve been doing pretty well with everything but have so many questions. 

When I got my blood work back in December, I upped my gluten intake quite a bit— last time having all my favorite Christmas cookies, special holiday beers etc. I developed a really itchy rash around my mouth and nose bilaterally, which is still kicking around. Should I have this checked by a dermatologist or give it some more time to potentially respond to the gluten-free diet?

At the same time in December, I really relaxed my workout regimen. I have felt for a few years now that I’ve been making less progress than the effort I was putting in. My iron has been an issue since early childhood, and I’ve been on supplements but it doesn’t make much difference. Now that I’m on the diet, I am trying to get back into a workout routine, but I’m left feeling very achy and fatigued after. So I’m wondering if I should just keep taking it easy and hold off on higher intensity workouts? 

The last thing I’ve really been struggling with is brain fog. I have an intellectually demanding job, and even the most basic words can be tough for me to recall. My focus has been terrible. Outside of work, I find myself starting different projects and never completing them, jumping from one hobby to the next in quick succession. On top of that, I’ve been pretty emotional and feeling like I just do not know how to properly care for myself. I feel like a complete space case. Are there supplements I could take to remedy this?

sorry in advance for the long post. It is so nice to have this forum to seek advice. My family has been supportive, but they usually just say “it’ll get better, you’re doing your best..” etc without really knowing how to help. And I’m really eager to get back to my doctor, but he is a gastroenterologist and really only seemed interested in my GI symptoms the first time around.

If you have waited a whole year to go gluten-free - being diagnosed last May- it is going to take longer than a month to feel better.  You spent a whole year knowingly hurting yourself.

Bananasbananas Apprentice
4 minutes ago, kareng said:

If you have waited a whole year to go gluten-free - being diagnosed last May- it is going to take longer than a month to feel better.  You spent a whole year knowingly hurting yourself.

And there’s that brain fog. I went gluten-free the day of my biopsy. The doctor said to keep eating gluten up until then even though we knew it was damaging based on the blood work.

Ennis-TX Grand Master

Read the newbie 101 make sure your doing everything right, removing diary and oats is normally suggested for the first few months. Also make sure you threw out contaminated scratched pots, crumbed condiment jars, cutting boards etc.
https://www.celiac.com/forums/topic/91878-newbie-info-101/

To help with the fog try this combo, Liquid Health Stress & Energy, and Liquid Health Neurological Support 1 tbsp each 3 times a day. Also to help with fatigue and brain issues you need to take magnesium which is a common issue with this disease, here depending on your bowl habits depends on what you need. If you have constipation then Natural Vitality Calm, take 1/4tsp (1-2g) at first and up it every day 1/4tsp (1-2g) to the full dose or til you get loose stools then back it back down dosing to tolerance. If you have normal daily bowl movements get Doctors Best Magnesium powder and take as suggested, night works best.
Iron, to help absorption you have to take it with vitamin C other wise your going to have more issues, topped with damaged gut and body constantly healing you need the help.

I use Vegan Protein Powders like Jarrow Pumpkin, Naked Pea, Growing naturals pea, Julian Bakery Pegan (both plain which is sancha inchi, and the cinnamon twist which is pumpkin), MRM Veggie elite etc all of which are high iron, magnesium, etc and great for working out, recovery. It took the first 2 years of healing before I started being able to step up my work out regime....I am now body building and working out most of the week. I personally follow a Paleo/Keto diet to manage other conditions and it keeps a lean and muscular build sustainable due to the higher protein, fats, and iron intakes and this disease.

Zinc might also be needed, which you can get in lozenges...if the lozenges taste like metal then your good, your body lets you know by the taste if it needs it or not.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,029
    • Most Online (within 30 mins)
      7,748

    Jen72
    Newest Member
    Jen72
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Scott Adams
      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
    • sleuth
      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
×
×
  • 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.