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Iron Anemia, Having Endo And Colonoscopy

TrillumHunter

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TrillumHunter Enthusiast
TrillumHunter
Posted

I'm a year into my diagnosis. I never had an endoscopy initially and was diagnosed by bloodwork alone. But, I continue to have serious problems with anemia. The only way I can get my serum iron to low normal is by taking 400mg of iron a day--kind of hard on the tummy! So now they want to scope for bleeding. I don't have any other glaring symptoms of g.i. bleeding other than the anemia. Have any of you gone through this? I'm thinking I must still have some significant damage due to the long time I went without diagnosis. It has been suggested I consider i.v. iron depending on the findings. I'm irritated by the whole deal because I need NUTRITIONAL support but no one seems able to help. I'm left trying to figure it out on my own.

Anyone else been there?

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Guest hightop girl
Guest hightop girl
Posted

Unexplained anemia was my biggest symptom. Taking iron did not increase my iron levels and eventually an allergist found that I had parietal cell antibodies in my stomach and therefore would not be able to absorb nutrients like iron. I had to have 2 iron infusions (iv iron) and give myself B12 injections.

BRUMI1968 Collaborator
BRUMI1968
Posted

I have read that you might want to check your stomach acid levels. You can't digest iron or B12 w/o good amounts of stomach acid. Many many people are low on it, especially those over 50. Just a thought. Good luck.

p.s. if you have heartburn, it does not mean you have high stomach acid; it means, in most cases anyway, that the sphincter that blocks your esophagus from your tummy has lazy moments.

ravenwoodglass Mentor
ravenwoodglass
Posted
I'm a year into my diagnosis. I never had an endoscopy initially and was diagnosed by bloodwork alone. But, I continue to have serious problems with anemia. The only way I can get my serum iron to low normal is by taking 400mg of iron a day--kind of hard on the tummy! So now they want to scope for bleeding. I don't have any other glaring symptoms of g.i. bleeding other than the anemia. Have any of you gone through this? I'm thinking I must still have some significant damage due to the long time I went without diagnosis. It has been suggested I consider i.v. iron depending on the findings. I'm irritated by the whole deal because I need NUTRITIONAL support but no one seems able to help. I'm left trying to figure it out on my own.

Anyone else been there?

Have they done a stool exam for occult blood? Did they find any? I would ask for that first before I let them do the endo and colonoscopy. If they don't find occult blood than chances are you are not bleeding internally and your body is taking some time to heal. Have you asked your regular doctor for IV iron infusions? I would try that route. If you do agree to their tests do make absolutely certain that the prep they give you is gluten free and also be prepared to have the GI tell you that you are not celiac. I don't know how celiac savvy your doctor is but he may insist if he does not see damage that it was a false diagnosis. That happened to my DD after she was gluten-free for 2 years when she was examined at one of the best hospitals in the country. The specialist insisted that the initial diagnosis was false. He only had her back on gluten for a week before testing, we know that it takes at least 3 months for some of us to get enough damage to show on a endo after being gluten-free for a while.

TrillumHunter Enthusiast
TrillumHunter
Posted
  • Author

Ravenwoodglass you are just AWESOME! People need to hire you to take on appointments and give the drs the what for!

The gi I'm seeing is very celiac friendly. He talked about damaged villi at a microscopic level versus visible scalloping and that we may see neither at this point. I am doing an occult kit but I honestly will be shocked if it is positive. I am worried about my stomach though. It has been burning lately and that's new for me. I agreed to this mainly because of my stomach--I don't really care what anyone has to say about celiac at this point. I will never put gluten in my mouth knowingly again. I had stomach problems like this when I was younger but I was drinking frequently and living on fast food.

The stomach acid this is interesting. I'm nearing 40 but I wouldn't be surprised to find I have the stomach of a 50 year old. Whenever my stomach is really burning, the only thing that makes it go away is an acidic drink like lemonade/limeade or oj.

I'm a bit freaked by the iv iron thing--anaphylaxis and the time consideration being top in my mind.

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