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. - Theresa2407 replied to Aya77's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Books about celiac

    2. - Known1 replied to Aya77's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Books about celiac

    3. - knitty kitty replied to Colleen H's topic in Coping with Celiac Disease
      3

      Barilla gluten free pasta

    4. - Scott Adams replied to Colleen H's topic in Coping with Celiac Disease
      3

      Barilla gluten free pasta

    5. - knitty kitty replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      13

      Pain in the right side of abdomen

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

    • Total Members
      133,470
    • Most Online (within 30 mins)
      7,748

    Melinda pedraza
    Newest Member
    Melinda pedraza
    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

    • Theresa2407
      You are correct.  Same place.  I have used their site for so long and have it bookmarked.  Still living in past.  Our support group was affiliated with them.
    • Known1
      Hmm, I think you mean the Gluten Intolerance Group®?  Their website is not gig.net.  Maybe it was at one point?  I am new to all of this, but did find their website here:  https://gluten.org/ Kind Regards, Known1
    • knitty kitty
      @Scott Adams, You're right about corn and wheat not sharing similarities in the 33-mer peptide segment of gluten.  Corn has a completely different peptide that causes an autoimmune reaction because it attaches to HLA-DQ8.  Casein in dairy shares with wheat similarities in the33-mer peptide chain. Sorry about the oversimplification.  Maize Prolamins Could Induce a Gluten-Like Cellular Immune Response in Some Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC3820067/
    • Scott Adams
      I just want to mention that corn and wheat do both contain storage proteins (corn has zein, wheat has gliadin and other gluten proteins), and there are some small similarities in certain amino acid sequences. However, those similarities are not considered medically equivalent, and corn proteins do not trigger the autoimmune response of celiac disease in the vast majority of people with celiac. Celiac disease specifically involves an immune reaction to gluten peptides found in wheat, barley, and rye. Corn is classified as gluten-free because its proteins do not activate that same immune pathway in most individuals. Although corn intolerance is very real, the explanation about the proteins being the same is oversimplified to the point where it's not accurate.
    • knitty kitty
      @Heatherisle, Newly diagnosed people often suffer from nutritional deficiencies.  Thiamine B1 stores can be depleted within a few weeks.  Thiamine deficiency can be localized in the gastrointestinal tract causing Gastrointestinal Beriberi.  It is under diagnosed by doctors!  Dysfunction of the gallbladder can be seen in Gastrointestinal Beriberi.   Have your daughter mention the possibility of Gastrointestinal Beriberi to her dietician!  Gastrointestinal Beriberi will be improved with high dose Thiamine administration, orally or by IV.  It's important to have thiamine deficiency corrected as quickly as possible to prevent life threatening health problems and risk permanent damage.   I had Gastrointestinal Beriberi but my doctors did not recognize it.  I had diarrhea.  I had my gallbladder removed (gallbladder attack).  Still had diarrhea.  My thiamine deficiency progressed to Wernickes Encephalopathy.  My doctors diagnosed me as "depressed".   I corrected the thiamine deficiency at home with over the counter Thiamine Hydrochloride tablets.  I'm very thankful I studied Nutrition.   See if the symptoms match:  Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Gastrointestinal Beriberi Presenting With Chronic Diarrhea: A Case Report https://pmc.ncbi.nlm.nih.gov/articles/PMC12794365/
×
×
  • 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.