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

Mamatomy8

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Mamatomy8 Rookie
Mamatomy8
Posted

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? 

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LauraTX Rising Star
LauraTX
Posted

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!  

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Mamatomy8 Rookie
Mamatomy8
  • Author
Posted

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! 

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nvsmom Community Regular
nvsmom
Posted

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!

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1desperateladysaved Proficient
1desperateladysaved
Posted

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!

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Mamatomy8 Rookie
Mamatomy8
  • Author
Posted

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. 

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nvsmom Community Regular
nvsmom
Posted

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.

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frieze Community Regular
frieze
Posted

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

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Mamatomy8 Rookie
Mamatomy8
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Posted

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

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1desperateladysaved Proficient
1desperateladysaved
Posted

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

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nora-n Rookie
nora-n
Posted

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

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