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:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      14

      Ibuprofen

    2. - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      My only proof

    3. - Scott Adams replied to wellthatsfun's topic in Coping with Celiac Disease
      1

      still struggling with cravings

    4. - Scott Adams replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Oh my goodness medication causing pain !!!!

    5. - Scott Adams replied to Me,Sue's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Knowing what to do when feeling unwell.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,869
    • Most Online (within 30 mins)
      7,748

    Stacy W
    Newest Member
    Stacy W
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse.  But it is important not to stop the treatment.  Regarding your problems with anxiety, again that is another symptom of a B12 deficiency.   I didn't know what anxiety was until it hit me like a train several months before gastrointestinal issues began, so I can certainly relate.   Two books which helped me hugely were At Last A Life by Paul David (there is a website you can look up) and The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi.  Although his book is aimed at people who have depression, following the principals he sets out was so helpful in lessening my anxiety.  Llardi suggests we need to focus on getting enough: - physical exercise - omega-3 fatty acids - natural sunlight exposure - restorative sleep - social connectedness - meaningful, engaging activity   ... and we should feel a lot better. That is not to stay you must stop taking medication for depression or anxiety if you have been prescribed it, but adopting the changes Dr Llardi sets out in the book should really help. Can I just ask two more questions:  1) you say that you are B12 deficient, did they test your iron levels too?  If not, you really ought to be checked for deficiency and, 2) did they check your thyroid function, as an overactive thyroid can be cause rapid heartbeat and a lot of coeliacs have thyroid issues? Cristiana        
    • Jmartes71
      Hello still dancing around my celiac disease and not getting medically backed up considering Ive been glutenfree since 1994.All my ailments are the core issue of my ghost disease aka celiac disease. Im angery because the "celiac specialist " basically lightly dismissed me.Im extremely angery and fighting for a new primary care physician which is hard to do in Northern Cali.So currently without and looking.Im angery that its lightly taken when its extremely serious to the one who has it.My only evidence is a brochure back in the days when I got news letters when I lived at my parents.It was published in 1998.I was diagnosed before any foods eliminated from my diet. Angery doctors don't take seriously when Im clearly speaking.I did write to the medicine of congress and have case number.
    • Scott Adams
      I totally get this. It's absolutely a grieving process, and it's okay to feel gutted about the loss of those simple joys, especially at 18. Your feelings are completely valid—it's not about being ungrateful for your amazing boyfriend, it's about mourning the life you thought you'd have. That "tortured by the smell" feeling is so real. It does get easier, I promise, but it's okay to sit in the sadness and just vent about how much it stings right now. Thanks for sharing that. Celiac.com has published a book on our site by Jean Duane PhD called Gluten-Centric Culture, which covers many of the social aspects of having celiac disease: This chapter in particular covers issues around eating with family and others - Gluten-Centric Culture: Chapter 5 - Grabbing A Bite Together:    
    • Scott Adams
      Many of us with celiac find that the fillers in medications can cause a reaction, and sometimes our bodies just process things weirdly. That "rebound muscle pain" and "burning feet" you described sounds awful and is a huge red flag. It's frustrating enough managing the diet without medication causing setbacks. So sorry you're dealing with this, but you're definitely on the right track by connecting the dots. You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      It's so tough when you're doing everything right and still get hit with it. I'm glad you're figuring out a system that works for you—the peppermint tea and rehydration powders are smart moves. It sounds like you've really learned to listen to your body, and that's half the battle. Sticking to simple, safe food at home is the best way to build yourself back up. It's great you can take the time to rest properly. Thanks for sharing what works; it's a big help to others figuring this out too. This article, and the comments below it, may be helpful:    
×
×
  • 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.