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

Newly Diagnosed With Celiac

foofangirl

Recommended Posts

foofangirl Newbie
foofangirl
Posted

I am newly diagnosed with Celiac Disease and this forum has given me so much hope, I feel like crying from happiness! I'm not crazy, I really am sick, and I can help myself at last! My question is this: When do you begin to feel 'normal' ? I know everyone is different and I have only been gluten free for two weeks, but I still feel like someone beat me up every morning, no matter how much sleep I get. My hip, elbow, shoulder and wrist hurt all the time. However, the gastronomic issues are much improved and for that I am so grateful. Am I still exhausted all the time because I am ingesting hidden gluten or does it take time for the aches, pains and crushing fatigue to subside?

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

Celiac.com Sponsor (A8-M):


Christine0125 Contributor
Christine0125
Posted

I am newly diagnosed with Celiac Disease and this forum has given me so much hope, I feel like crying from happiness! I'm not crazy, I really am sick, and I can help myself at last! My question is this: When do you begin to feel 'normal' ? I know everyone is different and I have only been gluten free for two weeks, but I still feel like someone beat me up every morning, no matter how much sleep I get. My hip, elbow, shoulder and wrist hurt all the time. However, the gastronomic issues are much improved and for that I am so grateful. Am I still exhausted all the time because I am ingesting hidden gluten or does it take time for the aches, pains and crushing fatigue to subside?

I am fairly new too. I had a positive blood test in February. My doctor said an average of 6 months to heal. I'm currently back on gluten temporarily as I have an endoscopy scheduled next week but I was gluten free for about 2 months and while I noticed improvement in the nausea that was about it. I still was getting the muscle cramps, headaches and some gassiness. I just had about 8 viles of blood drawn today to test all my vitamin levels. I'm hoping to start seeing more improvement after I figure out what supplements I need to take.

I felt much like you... I wasn't depressed with the diagnosis, I was so relieved to have an answer.

Bubba's Mom Enthusiast
Bubba's Mom
Posted

I am newly diagnosed with Celiac Disease and this forum has given me so much hope, I feel like crying from happiness! I'm not crazy, I really am sick, and I can help myself at last! My question is this: When do you begin to feel 'normal' ? I know everyone is different and I have only been gluten free for two weeks, but I still feel like someone beat me up every morning, no matter how much sleep I get. My hip, elbow, shoulder and wrist hurt all the time. However, the gastronomic issues are much improved and for that I am so grateful. Am I still exhausted all the time because I am ingesting hidden gluten or does it take time for the aches, pains and crushing fatigue to subside?

It takes time. Your recovery time will be influenced by how much intestinal damage you have, your age, your state of health in general, how long you went unDXed, and whether you have vitamin deficiencies. Some people take months..some can take years.

Be sure you have searched for any hidden gluten and give yourself time. Do things that are relaxing and give you joy. Maybe reading, long baths, listening to music, going for walks, watching movies, etc.?

Be alert and watchful when selecting your foods, but do your best to get Celiac off your mind so you can relax at other times.

Best wishes!

BabsV Enthusiast
BabsV
Posted

I think everyone will have a different answer...depends on how long you were sick, how much damage your body sustained, what your symptoms were, how you heal, how strict you are on the diet, accidental glutenings, etc.

The doctor who did my biopsy told me, when she gave me the results, that I was to give the diet 3 months for ANY hint of improvement and 6-12 months for any real noticeable improvement. Then up to 2 years strictly gluten-free to see my blood tests return to normal (hopefully!)

I am almost 8 months gluten-free and while much improved I am still not 100%. I've lost the brain fog, the exhaustion, the tremors, the crankiness, the overwhelming anxiety plus I've put some weight back on (I lost a scary amount before diagnosis.) My nails and hair are growing and stronger and my skin no longer looks like paper.

I am still not back to my 'before' level of energy but some days I get close. I still have some serious abdominal pain issues (the doctors are finally starting to look at things other than Celiac Disease as possible causes...FINALLY!) My sleep is still not great -- I blame that partly on an anti-anxiety medicine they put me on before my diagnosis (they were at the "it's all in your head" stage of diagnosis) which I've finally just weaned off of AND stress (I am an American living in Poland and dealing with Polish health-care which is erm, different than the Western level of care I'm used to dealing with -- I will return to the States this summer however so I'm hopeful that will help things overall.)

You need to be patient. Some people seem to 'heal' within days and some of us take much much longer. When I'm having a bad day I try to remember that before my diagnosis I was in much much worse shape.

Oh, forgot to say that my 6 month blood tests show a significant drop in antibodies which means it is working even if I don't feel that way some days!

foofangirl Newbie
foofangirl
Posted
  • Author

Thank you all so much for the quick replies! It helps so much to know that I am not alone, I love this resource! I'll try to remain calm, now I know it will take time to feel normal. I have an appointment with my doctor on Monday to go over my test results and take blood samples, I'll list the results for feedback. Thank you, Thank you, THANK YOU ALL!

Bubba's Mom Enthusiast
Bubba's Mom
Posted

Thank you all so much for the quick replies! It helps so much to know that I am not alone, I love this resource! I'll try to remain calm, now I know it will take time to feel normal. I have an appointment with my doctor on Monday to go over my test results and take blood samples, I'll list the results for feedback. Thank you, Thank you, THANK YOU ALL!

This might sound weird..but write down a list of your symptoms when you were at your worst. If you're having a day where you're feeling anxious that you aren't healing..look at your list. I think you will be surprised to see that some symptoms have disappeared..or gotten less intense? It helps you realize you are making progress.

inspired421 Newbie
inspired421
Posted

Thanks, everyone for this thread. I am on day 8 of eating gluten-free and it's intense. My doctor told me it would take at least 2 weeks for my body to be free of gluten. Then it will take time for my body to heal, as several people have already mentioned here.

I feel like a drug addict or alcoholic who wants just one small hit! I'm going to search for threads about people going through withdrawal. I wish I could check into a rehab center :huh:

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.

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


  • Member Statistics

    • Total Members
      127,702
    • Most Online (within 30 mins)
      7,748
    Kb2608
    Newest Member
    Kb2608
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • TexasCeliacNewbie
      High blood test numbers - with scales. Any advice?

      By TexasCeliacNewbie · Posted

      I do also have the bloating, gas, constipation, hair loss, an auto-splenectomy that no one can see any reason for and some elevated liver enzymes that don't seem to have a cause, I also have joint pain and some spinal compression fractures that have no explanation.  I am only 42 so haven't had a bone density test yet.  My calcium was normal, but my D was a little low.  They haven't checked for any other vitamin deficiencies yet.  My blood test for an autoimmue disorder was quite high but my Thyroid was all normal.
    • TexasCeliacNewbie
      High blood test numbers - with scales. Any advice?

      By TexasCeliacNewbie · Posted

      Hi, I have been having a lot of back pain and gut issues for 8 weeks or so.  I saw the GI on Monday and my results just came in from the lab.  Some of these number are high and off the little chart from the lab.  I am reading this correctly that I most likely have Celiac, right???  It would explain a lot of things for me.  She does have me scheduled for a colonoscopy and endoscopy in  2 weeks to do the biopsy.  I posted this prior, but forgot to put the range assuming they were all the same.  Someone advised me to repost with the ranges for some insight in the meantime. Immunoglobulin A, Qn, Serum 140 (normal) - Normal is 87-352 Deamidated Gliadin Abs, IgA 256 (High) - Moderate to strong positive at or above 30 Deamidated Gliadin Abs, IgG 65 (High) - Moderate to strong positive at or above 30 t-Transglutaminase (tTG) IgA 31 (High) - Moderate to strong positive above 10 t-Transglutaminase (tTG) IgG 10 (High) - Positive is at or above 10
    • trents
      Colonoscopy with large area of inflammation

      By trents · Posted

      Usually, the blood testing is done first and the endoscopy/biopsy follows for confirmation if there are positive antibody test scores. Historically, the endoscopy with biopsy has been considered to be the gold standard for diagnosing celiac disease. If the tTG-IGA scores are very high (5x-10x normal), some doctors will forego the endoscpoy/biopsy and grant a celiac disease diagnosis without it. So, if you are starting with the endoscopy/biopsy that may be all you need to arrive at a diagnosis. Another possibility would be for the GI doc to do a blood draw for antibody testing on the same day you come in for the endoscopy/biopsy.
    • AuntieAutoimmune
      Royal Caribbean Only, Please

      By AuntieAutoimmune · Posted

      Thanks,Scott. Yes, I had already seen those 
    • Scott Adams
      Colonoscopy with large area of inflammation

      By Scott Adams · Posted

      Unless your blood antibody levels are 10x the celiac disease positive level they usually do an endoscopy to confirm the diagnosis.  Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
×
×
  • Create New...