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Hi,new Here! Went To The Dr. Due To Extreme Fatigue...
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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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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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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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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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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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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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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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the acid reducers didn't help your anemia any, good luck.

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

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
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    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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