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

Fatigue..really?


staci002

Recommended Posts

staci002 Rookie

From the moment I stopped putting gluten filled foods in my mouth my stomach stopped bloating. Could this be? After 2 years of suffering and feeling horrible. After many tests with many different doctors looking at me like I had two heads. Of course though I thought maybe it was just a fluke. Since I had negative blood test and negative biopsy. So..my daughter and I went to the Olive Garden and I ordered pasta(not gluten free). (I had been gluten free for 9 days at this point and had no stomach issues) This was going to be my life changing moment. If it doesn't make me sick then I will belive the doctors, if it does well then I guess I know my own body better than the doctors. As soon as I finished my last bite my stomach was already starting to swell. By the time I walked out I looked 6 months pregnant. The following morning it took all I had to get myself out of bed and drag myself to work. Besides the array of stomach issues, I get headaches and EXTREME fatigue. I was sick for the next 5 days straight. I missed two days of work and when Friday finally rolled around I hit my couch right after work and never moved until Monday morning. This was my ah hah moment!!!

Is this really what could be causing my fatigue, muscle aches, and pain? I have not had energy to do much of anything for the past 2 years. I have missed so many days of work that everyday I crossed my fingers that it would't be my last. I feel like I have slept the past 2 years of my life away. Any free time I had was spent sleeping, praying that I finally would have some energy again one day.

My question for you all is (even though I know everybody is different)...Was fatigue a major issue for you guys? If you get glutened how many of you suffer with fatigue as a side effect?

Thanks so much, Staci


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



Celiac.com Sponsor (A8-M):



eatmeat4good Enthusiast

I literally slept for 7 years....I could not think at all...I was tired, asleep, or in the bathroom. That's it.

Yes, fatigue can go away.

Before that I functioned all day every day...then I became the patient with "two heads" as you say. No one knew what was wrong. 7 months "clear of gluten" and I have no more fatigue.

You know your body best. I think you conducted the perfect test...and your results sound very reliable in terms of Gluten Intolerance/Celiac. :)

Here's to being able to stay awake for life! ;)

staci002 Rookie

I literally slept for 7 years....I could not think at all...I was tired, asleep, or in the bathroom. That's it.

Yes, fatigue can go away.

Before that I functioned all day every day...then I became the patient with "two heads" as you say. No one knew what was wrong. 7 months "clear of gluten" and I have no more fatigue.

You know your body best. I think you conducted the perfect test...and your results sound very reliable in terms of Gluten Intolerance/Celiac. :)

Here's to being able to stay awake for life! ;)

Eatmeat4good,

You really just made my day! It's so helpful to know that I'm not alone. I'm looking forward to hopefully more energy, less fatigue, and making memories with my family instead of sleeping my life away :)

Ramos1985 Newbie

So I was just diagnosed several hours ago with celiac and as my Doctor and I went through the symptoms it became pretty apparent that my chronic fatigue was caused by my body's reaction to gluten. While he said celiac impacts people differently, I would have to say that now that I look back at times when I became extremely fatigued after eating or drinking something high in gluten that the signs were definitely there before I decided to go to the doctors.

Now that I am going to have to change my diet I am interested to see if I will have more energy as I begin cutting glutens out of my food and drink.

eatmeat4good Enthusiast

You will definitely have more energy as the months go by. I'm still getting better. To both of you: Take your vitamins. Malabsorption is hard on the body and you should have vitamin levels checked. I didn't at first. Then after 6 months of taking 5000 mg D a day, checked my blood and I was just inside the range or normal. Wonder what it was before? :blink: The AEDK and the B vitamins are very important in addition to B12 and iron and folic acid. I think that is the Celiac list. Anyway, the more consistent I am about vitamins, the better energy I have. Just another thought for you as I am still in recovery myself.

Staci002- I'm glad I was able to give you hope. Every little bit I can give helps to erase all those senseless years of misery and loss. You kinda made my day too! ;)

GlutenFreeManna Rising Star

I was so fatigued and in pain I spent several months bed-bound. Drs. tested me for everything under the sun (except celiac) and wanted to diagnose me with either fibromalysia or chronic fatigue syndrome. Now over a year off of gluten I am able to do things again instead of wasting my days in bed barely aware of what day it is or what is going on around me.

Bottom line--Yes the fatigue is caused by gluten. You're symptoms are real. It's not all in your head.

BTW, next time you go to Olive Garden you can get gluten free pasta you know?

staci002 Rookie

Bottom line--Yes the fatigue is caused by gluten. You're symptoms are real. It's not all in your head.

Thanks so much for your reply. It's great to know there is hope!! :)


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



Celiac.com Sponsor (A8-M):



Kim69 Apprentice

Yes fatigue was incredible! I felt like just dropping to the floor in a heap and not moving!

Gluten poisoning affects me for about a week. I get ab pain, swelling, gas, diarrhea but worst of all is the tiredness. It is a year since going gluten-free. I am still either getting cross contaminated, gluten poisoning or have a reaction to some other food. You may need to be patient! I still haven't gone back to running or cycling. 

anabananakins Explorer

Is this really what could be causing my fatigue, muscle aches, and pain? I have not had energy to do much of anything for the past 2 years. I have missed so many days of work that everyday I crossed my fingers that it would't be my last. I feel like I have slept the past 2 years of my life away. Any free time I had was spent sleeping, praying that I finally would have some energy again one day.

My question for you all is (even though I know everybody is different)...Was fatigue a major issue for you guys? If you get glutened how many of you suffer with fatigue as a side effect?

Thanks so much, Staci

Yep. Day three of being gluten free I had an amazing surge of energy. It's awesome. I used to go to bed at 8pm most nights, waking up at 7am still feeling exhausted. Suddenly it was 11pm and I was still wide awake :-) Even if I have a late night I now wake up feeling good, not like the old, familiar 'so exhausted I could die' feeling.

My whole life I was flattened by exhaustion. As a small child I was the one who had to go to bed earliest, even though my siblings are younger. My mum used to pick me up from school early because I couldn't always handle a full day. Everything was such a struggle. Now I feel great.

I did have a minor set back a few weeks after going gluten free, and we discovered my vitamin D levels were really low. Getting onto the Vit D helped even more.

sherrylynn Contributor

Now I have to wonder. They say you get Chronic Fatique Syndrom from a major illness or surgery. Maybe what people who have that actually have Celiac. Starting to think people on this forum are smarter than the "Doctors" that we keep going to.

eatmeat4good Enthusiast

Yeah, they diagnosed me with Fibromyalgia and left me to rot on my couch without ever testing anything else. I was so neuro-brain fogged I couldn't think what tests to ask for. It is supposed to be the LAST diagnosis not the first. These people on Celiac.com saved my life.

staci002 Rookie

Yeah, they diagnosed me with Fibromyalgia and left me to rot on my couch without ever testing anything else. I was so neuro-brain fogged I couldn't think what tests to ask for. It is supposed to be the LAST diagnosis not the first. These people on Celiac.com saved my life.

I couldn't agree more! I was also diagnosed with Fibromyalgia and Chronic Fatigue Syndrome. My family doctor sent me to a Fibro specialist three hours from where I live. The information that I got from the specialist shocked me...her exact words.."Fibromyalgia is something you will have for the rest of your life so you are just going to have to learn to deal with it". I couldn't believe my ears, I left there in tears. But now there is hope and I'm beginning to doubt my Fibro diagnosis. Maybe all my symptoms are coming from the gluten. I feel renewed again with hope!

mushroom Proficient

Now I have to wonder. They say you get Chronic Fatique Syndrom from a major illness or surgery. Maybe what people who have that actually have Celiac. Starting to think people on this forum are smarter than the "Doctors" that we keep going to.

Actually, my niece has never overcome her chronic fatigue despite being on strict gluten free diet. They can go together, unfortunately, as well as being a symptom of the other. (Not wishing to be a bucket of cold water :( )

krystynycole Contributor

I almost quit my job because of the fatigue, but going gluten-free has saved my job and has made me much happier as I'm not so exhausted all the time.

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. - daniellelawson2011 replied to daniellelawson2011's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Lab results

    2. - trents replied to daniellelawson2011's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Lab results

    3. - daniellelawson2011 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Lab results

    4. - Joe R replied to Joe R's topic in Related Issues & Disorders
      2

      Immunologist Referral if IgA Deficient

    5. - nanny marley replied to nanny marley's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Help needed


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,692
    • Most Online (within 30 mins)
      7,748

    messidmarie
    Newest Member
    messidmarie
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • daniellelawson2011
      Thank you for the welcome and reply. The first test was tissue transglutaminase IGA and it was normal. The second test just simply says IGA and it was 638. You definitely answered my question, it sounds like im negative for celiac since the 1st test was normal, and that another condition has caused the abnormal result of the IGA. That's exactly what I was wondering. Im almost positive I have MS and I've read results are higher like that with early onset. Or it could be IBS. Hopefully the visit with the neurologist will give me even more answers and point to a final diagnosis. I really appreciate you taking the time to reply and for helping. Thank you so much!
    • trents
      Welcome to the forum, @daniellelawson2011! First, we need to deal with terminology here. When you refer to the "ttg" test I take that to mean the ttg-iga. And when you refer to the "iga" test I take that to mean total iga since the magnitude of the score would suggest that. Total iga is not a test for celiac disease per se. It is run in order to check for iga deficiency. If you are iga deficient, then the ttg-iga and other iga tests that are specific for celiac disease will be abnormally low and this would potentially produce false negatives. You are not iga deficient but, rather, your total iga is abnormally high. This can suggest underlying health conditions, some of them can be serious in nature.  https://labs.selfdecode.com/blog/high-iga/ "High IgA usually points to chronic infections or inflammation, though many disorders can raise its levels. High IgA does not cause symptoms. People show symptoms from their underlying health problem." One thing I might add and that is you must have been eating normal amounts of gluten for weeks/months prior to the blood draw for antibody testing. Testing while on a gluten free or gluten reduced diet will not yield valid results. Also, here is a primer outlining the various antibody tests that can be ordered to check for celiac disease:  
    • daniellelawson2011
      After struggling with many different symptoms for years with no diagnosis, I decided to do my own research and I stumbled upon an article about celiac disease. I asked my PCP to order a ttg and iga. The results: the iga was high at 638. The ttg was negative. Of course I will discuss with my doctor, but i would like to hear from people that have went through the process of diagnosis to maybe give me some insight on what this means and where to go from here. Also of note, i had a brain mri which showed white lesions which arent typical at 44 years old. I have many MS symptoms. I go to the neurologist on Tuesday, but just curious if anyone knows if there is a correlation between iga and MS. I appreciate any help! Thanks!
    • Joe R
      Thank you for your advice. I appreciate the help. 
    • nanny marley
      Thankyou so much for your reply I decided to skip the senna has I've already had very loose stools last few days I've cut my portions down on the low fiber diet too and drinking lots of liquid has I just thought it would be wise to listen to myself too I've probably already done wat the senna would of done myself naturally by drinking clear apple juice which if not on the diet I would have to avoid anyways has I don't tolerate many fruit juices so I'm sure I've done the right thing I did try to contact the department on my letter but weirdly enough it was ringing but then after a while saying wrong number 🤷 but again I'm positive I've done the right thing I'm going to take today very lightly too with low portions and more liquids so yes thankyou for that advise I am very nervous but I have had time to think and read other peoples experiences and not all are bad there is some good advise and reassuring information from people who do these all the time so I'm trying my best to be positive so I can at least settle my mind knowing im doing this to help my own health has this year has been a rollercoaster for me cutting out gluten and lactose was a good idea but I still get flare ups and other symptoms so it definitely is worth a check like you said it was the calprotein that prompted the doctor to refer me again thankyou for your reply it's means a lot for someone to take the time to listen and respond and give uplifting advise  especially to me just now has I'm a bundle of nerves inside getting closer to tomorrow prep so thankyou for that 🙏
×
×
  • Create New...