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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Iron Infusions - What To Expect & Any Tips?
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I am scheduled for the first of my iron infusions on next Tuesday Feb 5th, and a bit worried. Have read horror stories of bad reactions. (but then again some people say its easy as pie!)

From anyone whos had it done, can you advise any tips?

Are you dopey at all from the benedryl? Can you go to work afterwards?

Do I need to remove my nailpolish?

Go in on a full or an empty stomach? Bring a drink or snack?

Thanks everyone!

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I had an iron infusion many years ago (before I was diagnosed) and it was fine for me. No reactions whatsoever, but the benedryl did make me very tired and loopy - in fact, I was so loopy that I started hitting on the very attractive pharmaceutical rep that came into the office that day - trying to incoherently talk to him as I'm hooked up to these IV's hahaha (I was probably about 20 years old at the time). I personally would recommend taking a sick day off of work and just rest afterwards in case you notice something or dont feel well for some reason. The infusion takes a while, so bring a book or something to do - I remember it taking 3 or 4 hours but I could be wrong. They gave me something to drink, and I dont remember them telling me that I needed an empty stomach, but check with your doctor anyway. Again, it was fine for me, so I wouldn't worry too much!! Good luck!!

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Hi Kristen,

It was not painful! If it felt at all uncomfortable, they just slowed the drip and gave me Benadryl. I took a pulpy Acai very healthy drink in with me that helped my energy levels. At the hospital, a volunteer would come by and take our lunch order (this was before I knew about Celiac).

I would just come home and sleep afterwards. You might want to take the day off? Especially if you're woozy.

I had 10 infusions within a month a few years ago because that's what my (fired) hematologist said was possible and it's difficult for me to pass up a challenge. :/

Here are the things I took away from it:

1. Be sure to stay for 30 minutes after the first infusion is finished because, if you have a reaction, you'll want to be in the office rather than speeding down a freeway trying frantically to get home to the bathroom! (Or wear a diaper.)

2. A simple remedy to having a reaction is to slow the drip. The nurses at the hospital where I received the remaining 9 infusions seemed to be very well aware of this. They were great! My first infusion took 1 1/2 hours (that's way too fast but not sure how much iron you're receiving). My subsequent infusions took 4.5-6 hours.

3. Do not aim for 10 iron infusions within a month if you react to the first one. This is not a competition. Your body is telling you something.

4. Benadryl is nice and makes the ride smoother.

Anyway, do not fret. Watch a comedy tonight or do something fun. Take food with you. I would make it a day once I understood about taking it slowly. Surprisingly, I never watched the movies I had downloaded but would end up chatting with the people receiving chemo. I never met a rude person there. Nurses were great/patients were great.

Let us know how it goes for you & good luck!

Take care,

Cali

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I had my infusion today and it was easy as pie! I worried for nothing, and it went perfectly smooth. I brought juice coffee and snacks which were such a good idea, thanks guys! They had trouble getting the IV in, but the third time was the charm. They gave me 200ml of Venofer. They did a test dose of 20 over a half hour and took my vitals every ten minutes. I didn't react at all, so they didn't have to give me benedryl. After my test dose I was fine so they infused the rest of the bag over 2 hours, then followed with a half hour of saline. I had no reaction whatsoever, so after four hours in a recliner with a warm blanket and my iPhone and ereader they sent me home. I came home and took a nap, and I feel great! My appetite is a bit strange, and I have a funny taste in my mouth, but no side effects so far. Will keep you posted if anything changes. I am scheduled for another bag in two weeks, then a month after that. Hopefully this gives me a boost, I would really enjoy being able to walk the dog an take the stairs again!!

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Hello,

I'm new to the circuit, but I can give you a view on iron infusions with the chemical called Faraheme.  I received two IV injections over a week apart.  The nurses will establish an IV line and administer the drug through the line, slow push.  I relaxed and read post injection.  They will monitor you for at least 30 minutes post to watch for reactions.  I had very good luck with the injections and felt much better within 3 weeks as far as energy levels and stamina were concerned.  The only drawback I had with the injection is that I couldn't have an MRI (the results could be inconclusive for 90 days after iron therapy).  I needed one for a possible orthopedic procedure and had to wait.  I did not have benedryl pre-injection.   The Faraheme has a very low reaction incidence.  Good luck!

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I had my infusion today and it was easy as pie! I worried for nothing, and it went perfectly smooth. I brought juice coffee and snacks which were such a good idea, thanks guys! They had trouble getting the IV in, but the third time was the charm. They gave me 200ml of Venofer. They did a test dose of 20 over a half hour and took my vitals every ten minutes. I didn't react at all, so they didn't have to give me benedryl. After my test dose I was fine so they infused the rest of the bag over 2 hours, then followed with a half hour of saline. I had no reaction whatsoever, so after four hours in a recliner with a warm blanket and my iPhone and ereader they sent me home. I came home and took a nap, and I feel great! My appetite is a bit strange, and I have a funny taste in my mouth, but no side effects so far. Will keep you posted if anything changes. I am scheduled for another bag in two weeks, then a month after that. Hopefully this gives me a boost, I would really enjoy being able to walk the dog an take the stairs again!!

I'm so glad it went easy peasy :). It sounds like they know what they're doing!

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I am scheduled for the first of my iron infusions on next Tuesday Feb 5th, and a bit worried. Have read horror stories of bad reactions. (but then again some people say its easy as pie!)

From anyone whos had it done, can you advise any tips?

Are you dopey at all from the benedryl? Can you go to work afterwards?

Do I need to remove my nailpolish?

Go in on a full or an empty stomach? Bring a drink or snack?

Thanks everyone!

I hope your iron infusions are going well.

 

I had the first try iron infusion around 2005 - had an anafalactic (sp??) response to the test dose, BP dropped to 20/40 and they nearly lost me - it was the kind of iron that takes awhile to infuse.  So, I didn't have that infusion.

 

In May of 2007, I went for another try because there is another formulation that they don't have problems with and it takes a lot less time for the infusion - I went once a week for 5 wks.  I was very sick for about 3-5 months after, but I cannot say with certainty that it was the iron.

 

Because of the celiac, which I was just diagnosed with last week, the iron infusion didn't really do much good.

I am actually considering going for this again after I've given my body time to heal so that it can absorb the iron properly.

 

I wouldn't go on an empty stomach.  My dr's office had snacks and beverages, but nothing gluten-free, so BYO!

The benadryl didn't make me dopey and I could go about my daily routine upon leaving the dr's office.

Don't even think about taking off your nail polish!

 

How long have you been on the gluten-free diet?  Did your dr. recommend the iron infusion?  I'm wondering at what point to revisit this.

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