Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

When Will I Feel Better?

Jenifer

By Jenifer
in Coping with Celiac Disease

Recommended Posts

Jenifer Newbie
Jenifer
Posted

Hi everyone. I was given a tentative diagnosis of celiac through biopsy two weeks ago. Dr wanted me to do blood tests to confirm but I had already removed gluten from my diet and was finally feeling well enough to go to work.

So I am on day 19 and I feel like I am on a roller coaster. I am 100 percent gluten free and mostly dairy free. Some days I wake up and feel good, then have about an hour of not feelin good. Other days, I wake up with joint pain, upset stomach, D, the whole deal all over again.

Is this normal?

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

Celiac.com Sponsor (A8-M):


EzyEric Newbie
EzyEric
Posted

Yes.  I am 6 months in and experience exactly what you described.  I have noticed the hour or so of not feeling good after feeling good when I get up is after I have eaten and am now digesting (and whatever else).  

nvsmom Community Regular
nvsmom
Posted

Yes.  Recovery is often an up and down process in the first year especially.  Hang in there.  You'll slowly get more good than day days.  :)

Jenifer Newbie
Jenifer
Posted
  • Author

Thank you. I feel slightly better knowing that I am not losing my mind. It's so hard for myself and my family to understand how I can go from being fine and active to curled up in a ball feeling like I have been run over. So frustrating!!!

manasota Explorer
manasota
Posted

Over time, you will become more accepting of yourself and your symptoms.  Hopefully, others in your life will do the same.  Try to be patient.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      130,800
    • Most Online (within 30 mins)
      7,748
    Connie Mac
    Newest Member
    Connie Mac
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Anyone From South Africa

      By trents · Posted

      Welcome to the forum, @Izelle! Normally, the diagnosis of celiac disease involves two stages.  The first stage involves a simple blood test that looks for antibodies that are pretty specific to celiac disease. Celiac disease is an autoimmune disorder that attacks the lining of the small bowel which produces antibodies that can be detected in the blood with tests specifically designed for this purpose. There are a number of these tests that can be run. Some are more specific for celiac disease and thus more reliable than others. The two most common antibody tests ordered by physicians when diagnosing celiac disease are the "total IGA" and the "tTG-IGA" test. At least these two should always be ordered. Here is a an article outlining the subject matter of celiac antibody tests:  If the tTG-IGA levels are 10x normal then it is becoming common practice in some countries to grant a celiac diagnosis on the bloodwork alone. The second stage involves an endoscopy with biopsy of the small bowel lining to look for the damage to the small bowel lining typically caused by celiac disease's inflammatory process over time. This is usually done in response to one or more positives from the blood antibody testing and constitutes confirmation of the antibody testing to eliminate the possibility of false positives. 
    • Izelle
      Anyone From South Africa

      By Izelle · Posted

      Hi there, Please can you tell me exactly how this disease is diagnosed? I am also from South Africa Regards Izelle
    • Waterdance
      Diagnosed gluten allergy but not Celiac

      By Waterdance · Posted

      Thank you for saying that. That doctor diagnosed me with IBS with no follow-up so the relationship is already concluded. If I pursue diagnosis further I'll request someone else. 
    • Rejoicephd
      Struggling to get into a good pattern

      By Rejoicephd · Posted

      Hey everyone. Thanks again for your suggestions. I wanted to give an update and ask for some follow-up suggestions from you all.  So I did go through all of my food items and stopped eating things that were “gluten free” and switched over to the “certified gluten free” ones (the ones with the g symbol). I also stayed away from restaurants except once and there I ordered something raw vegan and gluten free hoping for the best. I also stayed away from oats and soy and dairy. I've also been increasing my vitamin B complex. I've been doing this for about 12 days and while I know that's not that long, I'm still getting sick. Sometimes having diarrhea. Sometimes getting headaches and having necklaces. Sometimes waking up feeling horrible brain fog. I did go to my GI doc and they did a blood test and found my TtG-IgA was in the negative range (and a lower number than I'd had before). I also had normal levels of CRP. My stool showed no elevation of calprotectin and no pathogens. My GI doc said the symptoms could be related to a gluten exposure or to IBS. I'm keeping a food diary to see if I can narrow down whats going on. I know I have good days and bad days and Im trying to isolate what makes a good day versus a bad day. Generally so far it looks like if it eat something super cautious like raw vegetables that I chopped myself into a salad and almonds, im fine but if I eat something more complex including, say, chicken and rice (even if packaged and certified gluten free or made by me with gluten free ingredients), it may not go so well. I may end up with either a headache, neck tension, brain fog, and/or diarrhea that day or the morning after. Any other thoughts or suggestions? I am planning to start tracking my foods again but I wanted to do it in more detail this time (maybe down to the ingredient level) so are there any common ingredients that celiacs have issues with that you all know of that I should track? I've got dairy, oats, soy, eggs, corn, peas, lentils on my “watch list”. Other things I should add? I'm hoping if I track for another two weeks I can maybe pin down some sensitivities. Appreciate the help and tips. Thank you so much!!
    • trents
      Diagnosed gluten allergy but not Celiac

      By trents · Posted

      "My GI doctor ruled out gluten celiac entirely because I didn't have skin rash." Are you serious? The overwhelming majority of people with confirmed celiac disease do not have the rash. It's called dermatitis herpetiformis. It is found in only about 10-15% of those with celiac disease: https://www.celiac.ca/gluten-related-disorders/dermatitis-herpetiformis/ If your GI doc is operating on that piece of misinformation, I would start looking for a new GI doc because I wouldn't trust him/her in general. 
×
×
  • Create New...