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

Did any of you ever get discouraged that your symptoms wouldn't go away?


glutenkid

Recommended Posts

glutenkid Rookie

I've posted about this before, but I'm about 14 weeks in and have seen very little improvement. Did any of you take a long time to feel better, and do you think I should cast my doubts aside?


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



Celiac.com Sponsor (A8-M):



Airchee Rookie

Hello

I was diagnosed Dec 15 of last year and went totally gluten-free the next day. I actually got worse before I got better - it's a steep learning curve - but now, 4 1/2 months later I'm finally seeing improvement.  Hang in there. 

rarchy Apprentice

I was diagnosed with celiac very recently and so have only been gluten free for 5 weeks and was wondering why I haven't noticed much difference (just because I had read stories about people who noticed a huge difference after 1 week). My digestion has improved a little (less constipated, more regular and less bloat/gas!) but other than that nothing else.... I am glad to know I am not alone in not noticing anything, and also knowing how long it has taken you guys I will try not to get depressed if I still don't notice much for a few months!

Fbmb Rising Star
On 4/28/2017 at 9:05 AM, glutenkid said:

I've posted about this before, but I'm about 14 weeks in and have seen very little improvement. Did any of you take a long time to feel better, and do you think I should cast my doubts aside?

Oh yeah. I'm 6 months in and still have bad days, even though I know I'm not eating gluten. It takes a long time to heal. I have been on here a lot in the past 6 months venting because I didn't feel good. I just posted today about how tired I still am. Everyone has basically said the same thing - give it time. Be patient. It can take a long time. Some people said it can take a year. Hang in there.

TexasJen Collaborator

Yes!  I never really had GI symptoms, but I did have palpitations and restless leg syndrome from anemia.  These went away within the first month. But myalgia and joint aches aren't better after 1 year.  Waiting to get my antibodies re-tested and see if they're negative.....

KKJ Rookie

This is not uncommon. When you have celiac, your gut has been damaged and needs to heal. While going gluten free helps many fairly quickly, for others the journey to healing is a bit longer. The worse shape your gut is in at diagnosis, the longer healing can take. I noticed good results for the first 2-3 months and was eating mostly paleo because I realized I just was not digesting ANY carbs well, but then improvement leveled off. I found a nutritional therapist, NOT a dietician or nutritionist. A nutritional therapist is different training, food as medicine etc. and focuses on healing the gut. She also had celiac and was a wealth of info on the healing patterns of different folks. She suggested the GAPS diet for a while. So, I went through GAPs intro and then did full GAPS for about 7-8 months. That was exactly a year ago and I am just now able to put back rice, blue corn (yellow still a problem) and, in moderation, tapioca flour. I feel GREAT, but it has taken time. My suggestion is find a good nutritional therapist. If you are still eating LOTS of carbs, your gut may not be able to digest them. Does it take discipline? Yes. Does it mean you may have to learn to cook? Probably. For me, feeling great and being healthy is worth it's weight in gold and although I do get weary of always cooking, it's WORTH IT! Most packaged gluten free stuff (especially cookies etc) is truly not real good for you and will not help you heal. Be sure you are taking a good quality probiotic as well. MegaFood's Mega Flora is very good and safe for celiacs.

icelandgirl Proficient

Hi glutenkid,

Yes, I was very discouraged for a while.  I heard about people feeling better as soon as they went gluten free and couldn't understand why that didn't happen to me.  

For some of us it takes much longer than others to heal.  In the first year after diagnosis I had a lot of ups and downs.  It was really rough at times.  This board was so helpful to me at that time because I was scared that I would never feel good.  

It really took about a year to feel pretty good for me.  Now at 3 years I still see improvements happening!  It can take the body a long time to heal from years of damage.  You have to be very patient.

Try to eat a diet rich in while foods.  Avoid eating out for a while.  Make sure that you've been checked for common deficiencies like iron, B12 and D.  Most of all, be good to yourself.  You will heal with time!

((((Hugs))))


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



Celiac.com Sponsor (A8-M):



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. - Jmartes71 replied to Jmartes71's topic in Super Sensitive People
      2

      Alarming

    2. - trents commented on Scott Adams's article in Origins of Celiac Disease
      10

      Do Antibiotics in Babies Increase Celiac Disease Risk Later in Life? (+Video)

    3. - RMJ replied to Known1's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      What would you do - neighbor brought gluten-free pizza from Papa Murphy's

    4. - Colleen H posted a topic in Coping with Celiac Disease
      0

      Barilla gluten free pasta

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

    • Total Members
      133,448
    • Most Online (within 30 mins)
      7,748

    JEBarry
    Newest Member
    JEBarry
    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

    • Jmartes71
      Im sorry I didn't read until just now, thankyou.its pretty scary because again as I keep stating down played because of what im currently going through and validated by you guys, thank you very much for that because this is mentally challenging especially when asking, begging for medical help.In that note, I looked at my next appointment with gi whose my "new care",i thought. I had  scheduled appointment in March zoom call just to be dump, it was CANCELLED on their part! My appointment isn't there anymore! I do have appointment with Mayo clinic Tuesday on the phone. I also did talk to our local representative in Stanislaus office this past Friday, yesterday and ( Justin) thinks he knows about celiac disease. I don't think he understands because he told me he knows all about celiac! Well Justin why am I dealing with this bs in your county? Hintz the reason why I feel the need to go to city hall meeting yet I  don't have the medical  support....
    • RMJ
      I would not eat it. Some people are more sensitive to small amounts of gluten than others. Until you know how sensitive you are It is probably best to be extra careful. Is this a crustless pizza?  I looked on the Papa Murphy website, clicked on nutrition and filtered by “avoid gluten”. The only pizzas that it said were gluten free were crustless slices. Papa Murphy’s nutrition  
    • Colleen H
      Has anyone had a reaction to gluten free pasta ?  I made ground beef pasta and gluten free sauce and I'm having every symptom there is.  Nausea ,  constipated,   burning pins and needles, anxiety...etc   lots of pain 😞 headache 😭  Does this sound familiar?   I'm literally bed ridden.  
    • Known1
      Thank you for your reply.  I read the same thing about distilled water.  Oddly, drinking that has not caused any sort of reaction in my gut.  Nothing I can hear and feel anyway.  🤣  With that said, I have also switched over to spring water for drinking.  My traditional go to grocery store charges the exact same thing ($1.39) for a gallon of pre-bottled spring, distilled, or RO water.  The manual gallon refills of RO water have an attractive price of $0.49 per gallon, provided you use your own container.  Knowing it causes major bubble gut (and likely other issues) for me, I am avoiding all RO water moving forward.  In fact, I will gladly drink tap before RO water. Here is what Google says when searching "European study regarding reverse osmosis water". --Begin quote: European studies indicate that while reverse osmosis (RO) is highly effective at removing contaminants, it strips essential minerals (calcium, magnesium) and creates low-mineral, slightly acidic water.  Research suggests this may have long-term health implications, such as mineral deficiencies, while also negatively affecting the sensory quality (taste) of water. Key Findings from European Research & Reviews: Health Concerns: Epidemiological studies in Europe have associated low-mineral water consumption with increased risks of cardiovascular disease, cognitive decline, and reduced intake of essential nutrients. Mineral Depletion: RO systems can remove up to 95%+ of solutes, including minerals that are vital for health. Sensory and Quality Impact: Studies show that reducing the mineral content (TDS) of water makes it taste bitter or flat, with optimal, "fresh" taste found in water with a TDS between 190 and 350 mg/L, suggesting post-RO remineralization is necessary for better quality. Regulatory & Safety Context: While not banned, European regulations under the Drinking Water Directive emphasize the importance of mineral content, and countries like Germany often favor alternative treatment technologies that retain minerals. Industrial Application: In Europe, RO is widely accepted for industrial applications (e.g., food, beverage, pharma) due to its high purity output, but it poses challenges like membrane biofouling. Environmental Impact: RO is recognized to use more energy and waste more water (up to 15% more) compared to conventional treatment methods, raising environmental concerns in some municipalities.  Recommendations: Due to the loss of minerals, many experts recommend remineralizing RO water before drinking to improve taste and nutritional value.  --End Quote
    • knitty kitty
      I've heard RO water is bad, too.   Distilled water has all the minerals distilled out of it, so it will pull minerals out of your bones, too.  I only use distilled water to fill up my clothes iron so it won't get mineral deposits inside and quit working. I drink mineral or spring water.  
×
×
  • 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.