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I went to my regular family doctor. He really isn't a doctor at all and certaintly not a GI doctor (my GI is a joke); he is a PA! He is awesome! He took his time and explained things to me. He told me I was definitely not getting enough carbs and that was helping to make me feel worse! He told me to eat potatoes. He also had me get more labs drawn to check my iron, B12 and Ferritin.

My B12 is 311. Some things I read this is ok and some it is pretty low? Also my ferritin is 22? Seems low but I am definitely not the expert! Can anyone clarify this for me? (I haven't talked to him about it yet; I got the results before he did)

My iron is alright at 109!

Thanks a bunch guys!

I previously posted the above in a different thread with no luck...

The doctor called and said that I was definitely having absorbtion problems. I need to make sure I drink Gatorade every day and he is researching things to see what the best way is to get my ferritin up to 100 where he wants it to be. He told me he wasn't a celiac specialist but assured me he had the resources to help!

Do any of you have experience with getting your ferritin levels back up and if so how did you do it?

Thanks!

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Your PA is good to look into how to help increase your ferritin. I suffered from anemia since I was 11, and except for injections, my doctors claimed there was nothing else available. Then, when I was an adult, I was told that they believed the injections were too dangerous because some people suffer allergic reactions, so they told me there was nothing they could do. It was through this forum that I learned that you can receive infusions of iron at hospital infusion centers. This means that you receive iron intravenously, which takes about 60 minutes. When I told my new doctor, he said he'd look into it....and he discovered that the infusion center does more iron infusions than any other type. He had no idea this treatment was so common. Anyway, he'll probably be told that you should receive infusions once a week for four weeks. That'll get your number up, and when it drops again (if it does), he'll order the same series. Most people, once they follow a gluten-free diet, find that they will begin absorbing iron well after 6-18 months (from what I've read). For me, I spent two years receiving the infusions after being on a gluten-free diet for two years and seeing no improvement in my ferritin number. When it finally dropped to 2, thankfully I found this forum and got the information I needed. Unfortunately, what finally allowed me to stop needing the iron infusions was several courses of chemo. After the first chemo treatment (where they infused me with iron at the same time since I was due for my iron infusion), I never needed infusions or iron supplements again. Somehow the chemo healed my gut...and my digestion had never been better. Weird...but true!

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I went to my regular family doctor. He really isn't a doctor at all and certaintly not a GI doctor (my GI is a joke); he is a PA! He is awesome! He took his time and explained things to me. He told me I was definitely not getting enough carbs and that was helping to make me feel worse! He told me to eat potatoes. He also had me get more labs drawn to check my iron, B12 and Ferritin.

My B12 is 311. Some things I read this is ok and some it is pretty low? Also my ferritin is 22? Seems low but I am definitely not the expert! Can anyone clarify this for me? (I haven't talked to him about it yet; I got the results before he did)

My iron is alright at 109!

Thanks a bunch guys!

I previously posted the above in a different thread with no luck...

The doctor called and said that I was definitely having absorbtion problems. I need to make sure I drink Gatorade every day and he is researching things to see what the best way is to get my ferritin up to 100 where he wants it to be. He told me he wasn't a celiac specialist but assured me he had the resources to help!

Do any of you have experience with getting your ferritin levels back up and if so how did you do it?

Thanks!

The normal Ferritin range is between 50-100.

My Ferritin levels was 2 when I was diagnosed. Iron tablets didn't help because my intestines were too damaged to absorb the iron and it was too rough on my system. I had some iron injections recently and after 18 months on a gluten free diet my Ferritin is up to 18... *sigh*. I need some advice too.

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Thanks to both of you for replying! I am so sorry you have had such a hard time. :(

The doctor said that although I was within "range" that ALL of my vitamins and minerals were low! It's a big struggle dealing with the fatigue and muscle aches and headaches. I am still working 40+ hours a week and I have a husband and three boys to take care of too (just like everyone else here I have responsibilities)! IT is SO frustrating!

My doc put me on Integra Plus for now. I have my doubts that it will even work but I am willing to try ANYTHING! I think I'll mention the infusions to him if this doesn't work. I just don't know how long I can give it, you know? I had another breakdown last night because it is so hard to deal with the exhaustion. I can't imagine having to deal with it for a couple of years until my intestines heal. I feel so bad for everyone who has this and has to struggle everyday for such a long time!

I drink gatorade everyday now and I am trying to get more of a variety in my diet but I am just not hungry half the time(I am loding weight and I didn't need too) and take the Integra. I still haven't had a chance to get the oils like I was hoping to try...I am just too tired to shop after work and I keep putting it off. I am open to suggestions if anyone has anything else they have tried that worked for them....

Thanks so much, you guys have been a big help!!!

Summer

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Please....speak to your doctor NOW about infusions. Iron anemia causes your cellular oxygenation to be extremely low. If your cellular oxygenation falls below 70% for more than two years, your cells can begin turning cancerous. Unfortunately for me, I was too late--I developed breast cancer only a year after going gluten free. The iron infusions were too late.

There is NO reason not to begin infusions immediately. Your doctor is probably just not too knowledgeable about this topic. I wish you luck...

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Ive had iv iron. It was really helpful, but it was before glutenfreedom, so the iron went right back down a few months later.

Ferrous Gluconate is the most stomach-friendly iron form but you'll only absorb it if your intestines are doing well. US pharmacies have larger dose pills behind the counter if you ask for them. Floravit is a good liquid supplement but it's expensive.

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Floravita IS an excellent form of iron (though it's expensive), but the amount of iron in it is way too low to help most people with low ferritin due to celiac. I took Floravita for six months before giving up and going with the infusions.

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I have been having monthly infusion therapy for 8 months and have seen a significant increase in my ferritin (from 3 to mid 20s). This was after oral therapy for 2 years that produced absolutely no change. I am just starting a 3 month oral trial again to see if we can maintain the gain.

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I have been having monthly infusion therapy for 8 months and have seen a significant increase in my ferritin (from 3 to mid 20s). This was after oral therapy for 2 years that produced absolutely no change. I am just starting a 3 month oral trial again to see if we can maintain the gain.

That's awesome. I'm seeing my GP tomorrow so I'll ask him about it.

I'm not a big fan of the iron injections. They didn't last and I got an iron stain on my butt :angry:

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Crap! My ferritin has dropped back down to 11.

My doctor is going to organise for me to get an iron infusion.

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So sorry to hear that everyone has had such a hard time with this! I hope you all get feeling better real soon! It's a little discouraging as well. The Integra Plus probably won't do the trick then huh?

I had to call the doc again this morning so I'll ask him about the infusions when he calls me back.

I have been having a lot of muscle weakness and numbness and just feeling jittery and sensitivity to touch....it's weird. But it sound a lot like peripheral neuropathy. Do any of you have this?

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I have been having a lot of muscle weakness and numbness and just feeling jittery and sensitivity to touch....it's weird. But it sound a lot like peripheral neuropathy. Do any of you have this?

You may want to take a sublingual B12 along with a good high level B complex and see if that helps. Just make sure they are gluten free.

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I have been having a lot of muscle weakness and numbness and just feeling jittery and sensitivity to touch....it's weird. But it sound a lot like peripheral neuropathy. Do any of you have this?

I get vey sensitive to touch sometimes. I am freezing but feel like my skin is burning up and I can't stand even the lightest touch. I actually recoil from my girlfriend in case she tries to touch me.

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So sorry to hear that everyone has had such a hard time with this! I hope you all get feeling better real soon! It's a little discouraging as well. The Integra Plus probably won't do the trick then huh?

Well, it's possible that they might.

My problem is that I'm taking a long time to get my Coeliac disease under control. After 18 months I'm still testing positive which means my intestines haven't had a chace to heal and therefore can't absorb iron properly yet.

But I think you should go with the infusion or a series of iron injections and get your ferritin up fast. There's no reason to feel crap if you don't have to.

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I just don't understand it! The doctor has me on Integra Plus which has LOTS of B Vitamins as well as the Iron. NOW yesterday he put me on Lyrica for peripheral neuropathy. I think if he would just give me the B 12 injections along with the iron infusions that I would be 10 times better but he says let's give this a couple more weeks...I am so tired of waiting. It seems that I drag myself to work and by the end of the work day I can barely walk and I cry every night. I am almost to the point that I just want to stay in the bed every day...I contemplate staying out of work every day but I haven't missed...AHHH! Thanks for the advice and words of encouragement! You all are really a big help!

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Your doctor is sadistic. My doctor pulled the same thing on me--I think it was a control issue. He just wanted to be right and seemed very unconcerned that I was suffering. My ferritin level was at 2! And he still wanted me to continue taking oral iron even though I kept explaining to him that it wasn't working because I couldn't absorb it. When I finally got to the point where I thought I would die, I fired him and got a new doctor who was kind enough to investigate iron infusion treatments for me. There's no reason why you have to continue to suffer because your doctor is an egotistical sadist. It's time to leave and find a doctor who cares.

I'm so sorry that you're experiencing this hard time--please, even though you are feeling very fatigued, go to the hospital if you must to get someone's attention.

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I just don't understand it! The doctor has me on Integra Plus which has LOTS of B Vitamins as well as the Iron. NOW yesterday he put me on Lyrica for peripheral neuropathy. I think if he would just give me the B 12 injections along with the iron infusions that I would be 10 times better but he says let's give this a couple more weeks...I am so tired of waiting. It seems that I drag myself to work and by the end of the work day I can barely walk and I cry every night. I am almost to the point that I just want to stay in the bed every day...I contemplate staying out of work every day but I haven't missed...AHHH! Thanks for the advice and words of encouragement! You all are really a big help!

It there a way you can see the doctor instead of the PA? An iron infusion is really going to be much more helpful. If the Integra is in pill form chances are you are not absorbing it or the vitamins that go with it. The sublingual B12 will bypass the damaged gut by being absorbed by the mucous membranes in your mouth so it is going to be a good idea to try it before going on the Lyrica. Lyrica has a lot of side effects and if the sub B12 takes care of the problem it is a safer way to go.

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Unfortunately, Dr.s aren't required to study nutrition. It's an "elective" at some med schools!

They're trained to write prescriptions for symptoms. Celiac disease is barely touched on in school as well. It was considered a rare disease, and schools haven't caught up with idea that it's so prevalent.

Most Dr.s know little about it. Those of us who have it are the ones doing the research into nutrition, suppliments, etc. My best advice is to push for what you need!

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