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:
    Help Celiac.com:
    eNewsletter
    Donate

Hi,new Here! Went To The Dr. Due To Extreme Fatigue...


Mamatomy8

Recommended Posts

Mamatomy8 Rookie

Hi, I'm new and looking for other's experience and advice. I recently went to the dr., due to having extreme fatigue for several months. Much to my surprise, my blood count/ hemoglobin was extremely low, so much that I needed 2 blood transfusions . I was shocked! Have always been slightly anemic, but nothing like that. 

Found out later, my iron and vitamin D were also low. 

 

Got a referral to see a GI dr. and went there this week. He wants me to have an endoscopy, colonoscopy and Celiac blood test, which is  what brought me here! I had that done and am awaiting results.The endo  is scheduled for next week. 

 

so I was extremely surprised about the celiac testing, it's something that really wouldn't have crossed my mind. Aside from the anemia, fatigue and vit. deficiency, I haven't noticed many other symptoms. I have had some heartburn lately and started taking acid reducers, also insomnia and headaches. But no GI symptoms really, unless I drink a few beers, then I feel extremely bloated with a stomach ache.

 

Anyone else have this type of experience prior to diagnosis? 

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



LauraTX Rising Star

My diagnosis was pretty much by accident.  They thought I had ulcers and did an endoscopy.  Once they got everything figured out and I went on a gluten-free diet, many other things went away that I didn't realize were from the Celiac, including anemia and peripheral neruopathy.  There actually are a lot of people like me who do not have the "classic" diarrhea and GI symptoms that are associated with Celiac disease.  Given how severe your deficiencies are, I do hope that there is a solid answer, and Celiac would probably be the least bad and the most simple to treat.  Let us know when you find out results!  

Link to comment
Share on other sites
Mamatomy8 Rookie

My diagnosis was pretty much by accident.  They thought I had ulcers and did an endoscopy.  Once they got everything figured out and I went on a gluten-free diet, many other things went away that I didn't realize were from the Celiac, including anemia and peripheral neruopathy.  There actually are a lot of people like me who do not have the "classic" diarrhea and GI symptoms that are associated with Celiac disease.  Given how severe your deficiencies are, I do hope that there is a solid answer, and Celiac would probably be the least bad and the most simple to treat.  Let us know when you find out results!  

Thank yo Laura.. I agree on the celiac being the least bad! Other possible causes included stomach or colon cancer... I am praying for it to be celiac - or at least something else! 

Link to comment
Share on other sites
nvsmom Community Regular

That's impressive that your doctor thought of celiac disease.  For most doctors, I don't think it would have crossed their minds.

 

Don't tr the gluten-free diet until testing is done because it can affect your results.  If you have questions about your results (get copies) we can probably help you with it.

 

My symptoms involved more stomach aches but my symptoms weren't crippling, just a stomach ache a few times a day.  I also had a lot of migraines (more of a problem than the stomach) and bloating - beer was definitely the worst for that.

 

I became very anemic once. Like you the doctors wanted to do a blood transfusion (I declined because this was back in the early days of AIDS and poor blood screening) but the cause of mine was ITP, when white blood cells mark platelets for destruction, so I was essentially bleeding out.  It can be linked to celiac disease. .. Were your platelet counts fine?  

 

Good luck to you.  I hope you get clear answers and are feeling better soon!

Link to comment
Share on other sites
1desperateladysaved Proficient

Extreme fatigue and mind fog were my most prominent symptom.  I also had low D, anemia, low ferritin.  I am glad you are getting to the bottom of it!

Link to comment
Share on other sites
Mamatomy8 Rookie

That's impressive that your doctor thought of celiac disease.  For most doctors, I don't think it would have crossed their minds.

 

Don't tr the gluten-free diet until testing is done because it can affect your results.  If you have questions about your results (get copies) we can probably help you with it.

 

My symptoms involved more stomach aches but my symptoms weren't crippling, just a stomach ache a few times a day.  I also had a lot of migraines (more of a problem than the stomach) and bloating - beer was definitely the worst for that.

 

I became very anemic once. Like you the doctors wanted to do a blood transfusion (I declined because this was back in the early days of AIDS and poor blood screening) but the cause of mine was ITP, when white blood cells mark platelets for destruction, so I was essentially bleeding out.  It can be linked to celiac disease. .. Were your platelet counts fine?  

 

Good luck to you.  I hope you get clear answers and are feeling better soon!

Thanks for the reply. I don't know what ITP is, but they didn't mention my platelets being low. Only hemoglobin, iron and Vit. D. 

Link to comment
Share on other sites
nvsmom Community Regular

Thanks for the reply. I don't know what ITP is, but they didn't mention my platelets being low. Only hemoglobin, iron and Vit. D.

ITP used to stand for idiopathic thrombocytopenia purpura. It is an autoimmune problem. Thrombocytopenia is when you get low platelets for some reason or other. Platelets are responsible for clotting so if they are low you are more likely to bruise, get very heavy periods, and nose and gum bleeds. It can cause anemia BUT it can also be caused by other problems that cause low blood volume/production.... It isn't too common. Low hemoglobin, D, and iron is pretty common amount celiacs and often improves after many month gluten-free.

Best wishes.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



frieze Community Regular

the acid reducers didn't help your anemia any, good luck.

Link to comment
Share on other sites
Mamatomy8 Rookie

Well my blood test was negative...  feeling discouraged. Endo /colonoscopy tomorrow. I'll be glad when that is over with, but I really need some answers! 

Had my hemoglobin retested and it hasn't gone up since my blood transfusion a month ago- still a bit low and I've been taking iron faithfully. hmmmm

Link to comment
Share on other sites
1desperateladysaved Proficient

I hope your endoscopy will be conclusive for you.  It sure seems your absorption isn't working so good assuming your diet is rich in nutrients.

 

Dee

Link to comment
Share on other sites
nora-n Rookie

they were looking for bleeding with iron that low, and blood transfusion not helping

Link to comment
Share on other sites

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,162
    • Most Online (within 30 mins)
      7,748

    Lenabeana
    Newest Member
    Lenabeana
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • CatherineWang
      I'm pretty sure that in stores, you can find plenty of gluten-free options. But they are usually a bit more expensive.
    • cristiana
      Hello @BunnyBrown and welcome to the forum. I cannot say that I have had the procedure you describe, but recently I did have general surgery and was routinely intubated.  That pain was what troubled me most after the operation, far more than the operation site.  It took a few days to really settle down, I was quite badly bruised. It was taking so long I was a bit concerned so asked the question on another forum. A few patients came back to me and said they had suffered the same.  I imagine in my own case possibly the throat got bashed about a bit,  maybe they had difficult inserting the tube?  I've suffered with a painful throat post-endoscopy too, but never as long as the intubation pain.   I hope you will be feeling better very soon.   PS BTW - love the name!  I saw this today in an Easter display in a shop and your name reminded me of it.🙂  
    • cristiana
      This wonderful, Anne. I think you have a point about why people disappear off forums.  I found the first few years post diagnosis a real struggle and frankly wondered if I would ever feel better (not to dishearten people, but just to say it can take a while longer for some folk to heal).  However, once my antibodies were back within normal range it really has made a big difference to my health.  I've chosen to stick around because I'm a Mod, otherwise I might have been one of those that disappeared, too!      
    • Exchange Students
      Yes absolutely, we work with all public schools and some private schools in all 50 states.
    • Scott Adams
      Just a quick question, can the host live in any state in the USA?
×
×
  • Create New...