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Question About Sucrose Iron Infusion? Bone Density Scan?


LyndaCanada

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LyndaCanada Rookie

Hello Everyone

Well, the doctors suspected for months that I have Celiac and today I heard him say the words, are you prepared to go gluten-free for the rest of your life? Wasn't an easy thing to hear, I was hoping they'd say, it was just an infection or it was going away, I don't know what I was hoping. I guess I'm thankful it's not cancer or something worse like that.

So I guess I get to join the official gluten-free Celiac Club.

I am going to go for a sucrose iron infusion next month. I guess my iron levels have hit rock bottom. Has anyone ever had this done? I guess it's supposed to take 6 hours, so I show up at the hospital at 8 am and sit there til around 2:00, fun times. Just wondering what I might expect?

I suppose I should have asked the doctor but why can't I just take iron supplments, anyone know? I also have to go for a bone density test as well.

Maybe someone could explain this all to me, I'd sure appreciate it?

Thanks!:)

Lynda


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Jestgar Rising Star

That sounds unpleasant. Did they give you a copy of your lab results?

LyndaCanada Rookie
That sounds unpleasant. Did they give you a copy of your lab results?

Yes, it cetainly does! UGhh!

The weird part is that I've always been borderline anemic for years. I was very suprised that I was going to have to have this done. Unfortunately my GI doctor wasn't terribly talkative yesterday so I didn't get a chance to ask him much. I guess the iron levels must be pretty low since I became really sick in the last 3 months, who knows?

Lynda

nikki-uk Enthusiast
Hello Everyone

Well, the doctors suspected for months that I have Celiac and today I heard him say the words, are you prepared to go gluten-free for the rest of your life? Wasn't an easy thing to hear, I was hoping they'd say, it was just an infection or it was going away, I don't know what I was hoping. I guess I'm thankful it's not cancer or something worse like that.

So I guess I get to join the official gluten-free Celiac Club.

I am going to go for a sucrose iron infusion next month. I guess my iron levels have hit rock bottom. Has anyone ever had this done? I guess it's supposed to take 6 hours, so I show up at the hospital at 8 am and sit there til around 2:00, fun times. Just wondering what I might expect?

I suppose I should have asked the doctor but why can't I just take iron supplments, anyone know? I also have to go for a bone density test as well.

Maybe someone could explain this all to me, I'd sure appreciate it?

Thanks!:)

Lynda

Welcome to the club Lynda :)

Coeliacs often have a very low iron count as they cannot absorb it through the normal methods (as your intestine is damaged in celiac disease)

The quickest way to raise that level is through IV - although it doesn't sound like much fun I agree :unsure:

Coeliacs are also prone to Osteoporosis (as they can't absorb Calcium sufficiently) and a bone scan will reveal if your bones look 'thin' anywhere.

Hopefully - once you established on the gluten-free diet - and your bowel starts to heal you should start to be able absorb these nutrients much better and they will eventually right themselves.

Hope this answers your questions :)

LyndaCanada Rookie

Thanks Nikki, I appreciate the information. Honestly, i felt so brushed off at the doctor's office yesterday I was quite angry. He barely looked up from the report he was scribbling up to answer my questions. Like I said, I had NO CLUE my iron was this low, no wonder I felt so horrible!! He didn't explain anything ughh!!

Thanks again, I'm so thankful that I have this board to help me answer my questions that the doctor seemed too "busy" to answer!!

Lynda

flowergirl Rookie

Hi lynda, that sounds extreme. :unsure: My ferritin count was 18 a few months ago. Below borderline. My doctor had it retested recently and it is now 24. She says whatever I'm doing, keep on doing it. She also suggested I continue with the high potency iron supplements I'm taking (it has 270mg dried ferrous sulphate eq to 87mg of elemental iron and 300mcg Folic acid). It is taking long but I have a lot more energy and it's the only supplements I'm taking. I hope you feel better soon.

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
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