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 still don't feel much different.

Fbmb

By Fbmb
in Coping with Celiac Disease

Recommended Posts

Fbmb Rising Star
Fbmb
Posted

So I've been gluten free for 6 months. I gave it up the day of my endoscopy and never looked back. I was a fairly silent Celiac. My blood work was always normal (never anemic, malnourished), I didn't have all the horrible symptoms that others do. I think I caught it early and that those things were definitely coming. Since going gluten-free I notice that my belly is better. I still have days where it's not great, but in the last month I've noticed that it's consistently pretty good. I don't hardly ever get stomach aches. I've lost 16 lbs and I'm never bloated. Those things are good. But, aside from that, I don't feel much different than I did before. I'm still tired a lot. But I have two kids under 4 and I run a non-profit. I have horrible anxiety and that's only increased since finding out about my Celiac (it's health anxiety and it freaked me out big time that I have an AI disorder). I feel like my complexion looks the same (never had an issue with that). 

I just read stories on here that talk about how the brain fog lifted quickly, or how people don't feel tired anymore, etc. I'm still a zombie sometimes. Has anyone else has this experience? Maybe my body was doing such a good job compensating for my Celiac that I wasn't really very symptomatic to begin with - and that the tiredness I feel isn't due to gluten. 

Oh, FYI, I had a full thyroid panel done in December and it was all normal. 

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

Some of take longer to heal.  Cut yourself some slack.  A busy working mother with small children is both rewarding and taxing!  

You know what  I asked for on Mother's Day?  No cooking, food prep, or cleaning.  I do not want to go out (just too busy of a day for most restaurants  and my fav gluten-free restaurants are a state away).  I just want to take care of myself and not others.   I guess I have had a history of ditching my responsibilities on Mother's Day.  My SIL would watch the baby at her mother's house (with my hubby) and I would ride my bike to the beach, order a coffee and read!!!!).  I celebrated Mother's Day on Saturday with my Mom.  When my daughter was old enough to want to make me breakfast, I opted for lunch after my bike ride and coffee.  

Hang in there!  

Archived

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

Go to topic listing

  • 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
      - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Seeking advice on potential gluten challenge

      Welcome, @JudyLou, Your rash sounds very similar to the one I experienced. Mine was due to a deficiency in Niacin B3, although I had deficiencies in other nutrients as well. Celiac disease causes malabsorption of all the essential nutrients, but eating a poor diet, taking certain medications, or drinking alcohol can result in deficiency diseases outside...
    2. Wheatwacked
      - Wheatwacked replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Have I got coeliac disease

      This doctor is obviously under educated about Celiac Disease. Deficiencies that can cause oral thrush (Candidiasis) mouth ulcers: Thiamine B1 B12 Folate Zinc Vitamin C B2 B6 Iron Malabsorption Syndrome is often co-morbid with Celiac Disease causing multiple deficiencies of the essential vitamins...
    3. Jmartes71
      - Jmartes71 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Gluten tester

      I saw the thing for testing for gluten when at public places.I absolutely love but I wonder if they would come up with a bracelet or necklace that can detect gluten in the air.I would LOVE that, i know i get debilitating migraine from smelling gluten wheat what have you, all I know is when I go into places like Chevron- gluten Subway, migraine, Costco that...
    4. JudyLou
      - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Seeking advice on potential gluten challenge

      Oops! @Staticgypsy, I’ll get the book! Thank you!
    5. JudyLou
      - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Seeking advice on potential gluten challenge

      Thank you so much for your help, @trents and @Staticgypsy! I so appreciate your thoughts. My diet is high in foods with oxalates and I don’t notice any issues there. If eliminating gluten from my diet had changed anything I’d be happy to just keep on the gluten-free diet, but with eating gluten several times with no rash, and having a rash when I was man...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,151
    • Most Online (within 30 mins)
      7,748
    Nici
    Newest Member
    Nici
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Seeking advice on potential gluten challenge

      By knitty kitty · Posted

      Welcome, @JudyLou, Your rash sounds very similar to the one I experienced.  Mine was due to a deficiency in Niacin B3, although I had deficiencies in other nutrients as well.  Celiac disease causes malabsorption of all the essential nutrients, but eating a poor diet, taking certain medications, or drinking alcohol can result in deficiency diseases outside of Celiac, too.  Symptoms can wax and wane depending on dietary intake.  I knew an alcoholic who had the "boots" of Pellagra, which would get worse when he was drinking more heavily, and improve when he was drinking less.   Niacin deficiency is called Pellagra.  Symptoms consist of dermatitis, diarrhea, dementia, and death (the four D's).  A scaly rash on the feet and hands and arms are called the "boots" and "gloves" of Pellagra.  Darkened skin around the neck exposed to the sun is Casal's necklace.  Poor farmers with niacin deficient diets were called "red necks" because of this.    Does your rash get worse if you're in the sun?  Mine did.  Any skin exposed to the sun got blistered and scaly.  Arms, legs, neck, head.  Do you have dry, ashy skin on your feet?  The itchiness was not only from the rash, but neuropathy.   My doctors were clueless.  They didn't put all my symptoms together into the three D's.  But I did.  I'd learned about Pellagra at university.  But there weren't supposed to be deficiency diseases anymore in the developed world.  Doubtful it could be that simple, I started supplementing with Niacin and other essential nutrients.  I got better.   One of Niacinamide functions is to help stop mast cells from releasing histamine.  Your allergist gave you doxepin, an antihistamine which stops mast cells from releasing histamine.   Since you do have a Celiac gene, staying on the gluten free diet can prevent Celiac disease from being triggered again.   Interesting Reading: These case studies have pictures... Pellgra revisited.  https://pmc.ncbi.nlm.nih.gov/articles/PMC4228662/ Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Cutaneous signs of nutritional disorders https://pmc.ncbi.nlm.nih.gov/articles/PMC8721081/#:~:text=Additional causes of yellow skin,the clinical features of Kwashiorkor.   Hello, @Staticgypsy, I would not recommend cutting so many nutritious foods out of ones diet.  Oxalates can cause problems like kidney stones, but our bodies can process oxalates out of our systems with certain vitamins like Vitamins A and D and Pyridoxine B 6.   People with Celiac disease are often low in fat soluble vitamins A and D, as well as the water soluble B vitamins like Pyridoxine B 6.  Focus on serving your granddaughter nutrient dense meals to ensure she gets essential vitamins and minerals that will help her grow. Micronutrient inadequacy and urinary stone disease: an analysis of the National Health and Nutrition Examination Survey 2007-2018 https://pubmed.ncbi.nlm.nih.gov/36976348/ Multivitamins co-intake can reduce the prevalence of kidney stones: a large-scale cross-sectional study https://pubmed.ncbi.nlm.nih.gov/38564076/
    • Wheatwacked
      Have I got coeliac disease

      By Wheatwacked · Posted

      This doctor is obviously under educated about Celiac Disease. Deficiencies that can cause oral thrush (Candidiasis) mouth ulcers: Thiamine B1 B12 Folate Zinc Vitamin C B2 B6 Iron Malabsorption Syndrome is often co-morbid with Celiac Disease causing multiple deficiencies of the essential vitamins and minerals.  Low or deficient  Vitamin D is almost always found in undiagnosed Celiac Disease. "Over 900 genes have been reported as regulated by vitamin D"  Possible Role of Vitamin D in Celiac Disease Onset  "The overall prevalence rate of vitamin D deficiency was 41.6%, with the highest rate seen in blacks (82.1%), followed by Hispanics (69.2%)."    Prevalence and correlates of vitamin D deficiency in US adults
    • Jmartes71
      Gluten tester

      By Jmartes71 · Posted

      I saw the thing for testing for gluten when at public places.I absolutely love but I wonder if they would come up with a bracelet or necklace that can detect gluten in the air.I would LOVE that, i know i get debilitating migraine from smelling gluten wheat what have you, all I know is when I go into places like Chevron- gluten Subway, migraine, Costco that food smell of nasty gluten- migraine and same with Walmart subway.I absolutely HATE im that sensitive, my body reacts.Sadly medical hasn't taken core issue of celiac being an issue considering glutenfree ever since 1994 and in their eyes not because they didn't diagnose me. I am and wish I wasn't. If there was a detector of gluten in the air it would make a world of difference. 
    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Oops! @Staticgypsy, I’ll get the book! Thank you! 
    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Thank you so much for your help, @trents and @Staticgypsy! I so appreciate your thoughts. My diet is high in foods with oxalates and I don’t notice any issues there. If eliminating gluten from my diet had changed anything I’d be happy to just keep on the gluten-free diet, but with eating gluten several times with no rash, and having a rash when I was many years into gluten-free eating (and was much more careful at that point), I’m just baffled. Many, many thanks to you both. 
×
×
  • 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.