Got Some Of My Bloodwork Back Friday Severe Anemia

[Flasaltwater]

Ok As in my signature I have been fighting Anemia for a long long time this is nothing new to me. A different Dr called with my Lab results because the one I saw was not in. He basically scared the crap out of me. My iron level is at 6.8 he is asking me if I feel dizzy, rapid heart beat etc I tell him No I feel fine. Ugg He then proceeds to tell me sometimes with severe Anemia it is caused by Bleeding from somewhere inside or a tumor. I asked him would I have this tumor more then 15 years because I have been Anemic for that long probably longer that's just when I was first diagnosed.Really!! if he would have read my charts he would have seen that I already knew I was anemic I also told them I had been Diagnosed with IBS years ago and that I have had constant Diarrhea for 20+ yrs. Does this not throw any red flags up for them. He really made me mad he kept talking over me I even told him I was at work and it didn't seem to matter he just keeps going on about how low my iron is and I may need and IV of iron. He was not listening to me at all.The most bizarre thing is I do not feel tired I actually feel pretty good.I have been taking Floadix for a few weeks now. I think he said my liver was a little elevated whatever that means. Kidneys good, Thyroid negative still waiting on lipid panel and B-12.

Today I started taking an extra evening does of Iron and during the day I am also taking a table spoon of Black strap molasses with Vitamin C

[pricklypear1971]

Well, that was eventful. When does your regular doc return?

[Flasaltwater]

Well, that was eventful. When does your regular doc return?

She'll be back Monday, however I will be taking all my lab results to a different Dr that was referred to me. These people do not listen. I'm seriously sick of it.

[GlutenFreeManna]

I guess I don't see what upset you so much. If you have anemia that bad you may need to go get iron injections or an iron IV for a while. Just eating right and taking supplements may not help right now if your body is super dammaged from gluten. You may feel "fine" becuase you are used to feeling that way and think it's normal at this point. I may be wrong but I'm guessing you will see huge changes in something once you get your iron back to normal. Hopefully your regular dr will discuss this with you as well and give you the best options for treatment.

[pricklypear1971]

She'll be back Monday, however I will be taking all my lab results to a different Dr that was referred to me. These people do not listen. I'm seriously sick of it.

I agree you may benefit from some heavy-duty supplementation. I also hope you jive with the new doc. It makes a huge difference when you feel you can trust your doctor.

I also agree your frame of reference may be off re: "fine". Mine sure was.

[rosetapper23]

I agree with everything GlutenFreeManna said--you should definitely get an iron IV. With a ferritin (I assume it's ferritin) level so low, you're endangering your health. The low reading also indicates that you're not absorbing iron in your gut--take molasses and supplemental iron will do nothing for your condition. The doctor is correct--you need an iron IV NOW.

[AVR1962]

I think you did the wise thing by adding an extra dose of iron. When your regular doc gets back ask to be retested or see what she thinks of the labwork done. I too have had a lifelong history of anemia and like you were indicating you would have more than likely felt something. Are you having in feeling of being faint, lightheaded or black-outs, naseua? That's my indicator. I take a slow release iron, works great!

[Flasaltwater]

I think you did the wise thing by adding an extra dose of iron. When your regular doc gets back ask to be retested or see what she thinks of the labwork done. I too have had a lifelong history of anemia and like you were indicating you would have more than likely felt something. Are you having in feeling of being faint, lightheaded or black-outs, naseua? That's my indicator. I take a slow release iron, works great!

What slow release do you take? No I do not feel faint or Dizzy.I actully started feeling better taking the Floriadix. I think back in October of last year to January I must have been even lower because I did feel dizzy going up and down the stairs but because I knew it must be my iron I started taking it again felt better but then stopped and just started back recently. My question to most all of you is. When you have a chronic disorder that causes malabsorbtion should you take iron and vitamins everyday? I guess I though when I felt better I should just not take them anymore. Stupid on my part. 12 years ago I was a 7.4 then in 2005 I was able to get it to a 10 but then of course stopped taking the iron. I've never had an IV with Iron. when I was 7.4 Dr told me to take 2 slo-fe a day with Vitamin C . Maybe I should do that Instead of the Floradix? I still trying to figure things out. The words I write may seam stupid and no brainer to some but I find all this over whelming, not the iron but trying to stay off wheat, Gluten Dairy. Now I'm told no caffeinated drinks it blocks absorption as does soy. Oh and not to mention I am seriously hungry all the time so that really sucks but I never gain weight from it. I eat all the time but now I feel like Im running our of things to eat. I guess Im getting a little frustrated.

Thank you for all for your responses. Im going to be talking to the other Dr tomorrow. Im trying to get an appointment with the MD that was refereed to me. The Dr's that I keep referring to are the ones that did my skin Biopsy but they are also Md's but specialize in Skin and skin cancer and are the ones that ordered the labs. I told her I would have the other Dr order my labs and she said "No Ill do it that way I make sure I get them". she didn't even mention labs until I told her I was anemic and that I was going to a different Dr to talk about being tested for celiacs.

[Jestgar]

My ferritin was 2, and no one suggested infusions (nor would I have done them). You can replenish your iron once the cause of the anemia is found and eliminated.

I took the SlowFe twice a day, and something else in the middle for good measure. I didn't have any constipation issues (common when taking iron) or nausea.

I would suggest you ignore all the advice on making the absorption perfect, if trying to follow them would make it more difficult for you. Do what works for you, and don't worry about using a variety of options. Use both the SlowFe and the Floradix if you want. If you find you're having issues, stop one or the other and see if it's the source, or the amount.

[Skylark]

You are on the gluten-free diet, right? Or are you trying to get tested for celiac? Idiopathic anemia is one of the hallmarks of celiac disease.

[Flasaltwater]

You are on the gluten-free diet, right? Or are you trying to get tested for celiac? Idiopathic anemia is one of the hallmarks of celiac disease.

Yes I am 6 weeks Gluten free I'm not sure my stomach could handle Gluten or dairy right now. I know I have to eat it again to get the right diagnosis. Not sure I am willing to do this. I am taking 1 ferrous Sulfate with 1000mgs of Vitamin C in the afternoon I had 1 tablespoon of Black strap molasses evening I just took 30ml of Floradix Ferrous Glutenate <<Spelling For dinners I have fixed my baked potato fried one piece of liver in a cast iron skillet with caramelized onion coated with Black strap molasses used Olive oil instead of vegetable. my daily rutine with be Ferrous sulfate and Vitamin C in morning before work tablespoon of mollasses in afternoon 30ml of Floradix in evening.

If this doesn't get my iron up I'm lost but I have had success in the past with getting my levels up but of course I was eating the wrong foods and then stopped taking the iron and that is why I am here now with this iron issue.

[ravenwoodglass]

Yes I am 6 weeks Gluten free I'm not sure my stomach could handle Gluten or dairy right now. I know I have to eat it again to get the right diagnosis. Not sure I am willing to do this. I am taking 1 ferrous Sulfate with 1000mgs of Vitamin C in the afternoon I had 1 tablespoon of Black strap molasses evening I just took 30ml of Floradix Ferrous Glutenate <<Spelling For dinners I have fixed my baked potato fried one piece of liver in a cast iron skillet with caramelized onion coated with Black strap molasses used Olive oil instead of vegetable. my daily rutine with be Ferrous sulfate and Vitamin C in morning before work tablespoon of mollasses in afternoon 30ml of Floradix in evening.

If this doesn't get my iron up I'm lost but I have had success in the past with getting my levels up but of course I was eating the wrong foods and then stopped taking the iron and that is why I am here now with this iron issue.

I noticed in your sig that you are being woken at night by D. That combined with your anemia and other issues really scream celiac. IBS does not wake someone up with D. Unless you have had an awful lot of slip ups with gluten after 6 weeks gluten free chances are very good that you would get a false negative on testing. You may also find it makes you very ill to do the needed 3 months or so back on gluten to get tested by a GI. Hopefully your results with your derm will be positive so you don't have to go through more testing. In the end if you improve on the diet followed strictly that matters more than poisoning yourself for an 'official' diagnosis. I do hope you are feeling better soon.

[pricklypear1971]

Wow, that's some heavy-duty iron eating there. My hat is off to anyone that can eat liver!

You may want to consider organ meats are considered high in iodine in general, and potato skins are also high iodine foods -if your rash responds to iodine withdrawal this may be a source of irritation for you.

Good luck!

[Skylark]

If you get better off gluten and it makes you very sick, consider going without a formal diagnosis. I never gluten challenged. Life is too short to lose three months plus recovery time to possibly get a piece of paper telling me what I already know!

I hope your iron comes back up and you feel better soon!

[AVR1962]

Yes I am 6 weeks Gluten free I'm not sure my stomach could handle Gluten or dairy right now. I know I have to eat it again to get the right diagnosis. Not sure I am willing to do this. I am taking 1 ferrous Sulfate with 1000mgs of Vitamin C in the afternoon I had 1 tablespoon of Black strap molasses evening I just took 30ml of Floradix Ferrous Glutenate <<Spelling For dinners I have fixed my baked potato fried one piece of liver in a cast iron skillet with caramelized onion coated with Black strap molasses used Olive oil instead of vegetable. my daily rutine with be Ferrous sulfate and Vitamin C in morning before work tablespoon of mollasses in afternoon 30ml of Floradix in evening.

If this doesn't get my iron up I'm lost but I have had success in the past with getting my levels up but of course I was eating the wrong foods and then stopped taking the iron and that is why I am here now with this iron issue.

You are off gluten and dairy and still having D? Could you possibly be reacting to soy products, given your dairy and gluten free diet are tight? Keep this in mind about going back on glutens for testing. If you can do it, great! Having that diagnosis does help docs so they know what direction to turn with symptoms and the focus can be there rather than spending months doing tons of tests trying to eliminate other possibilities. However, this is the bad thing about testing, it is not reliable. You could very well be celiac, test comes back negative, a year later you retest and the test may be positive.

Docs wanted to put me back on gluten to test me after being off, I tried it and made it to day 12, I got so sick. I honestly felt it was killing me. I do not suggest it if it makes you sick to go back on as if there is damage already and you go back on it will be that much longer before you heal and get better. You have to do what is best for you and what you feel you are capable of.

Are you having stomach issues (GERD), burning stomach/acid relux?

I take Gentle Iron w/vit C, folic acid & B12 combo along with a multi vit w/iron.

[Flasaltwater]

You are off gluten and dairy and still having D? Could you possibly be reacting to soy products, given your dairy and gluten free diet are tight? Keep this in mind about going back on glutens for testing. If you can do it, great! Having that diagnosis does help docs so they know what direction to turn with symptoms and the focus can be there rather than spending months doing tons of tests trying to eliminate other possibilities. However, this is the bad thing about testing, it is not reliable. You could very well be celiac, test comes back negative, a year later you retest and the test may be positive.

Docs wanted to put me back on gluten to test me after being off, I tried it and made it to day 12, I got so sick. I honestly felt it was killing me. I do not suggest it if it makes you sick to go back on as if there is damage already and you go back on it will be that much longer before you heal and get better. You have to do what is best for you and what you feel you are capable of.

Are you having stomach issues (GERD), burning stomach/acid relux?

I take Gentle Iron w/vit C, folic acid & B12 combo along with a multi vit w/iron.

I'm thinking just for my own sanity if I continue to get well I will not be stuffing wheat or Gluten down my throat just to get a Diagnoses. I may send for the genetics test I'm worried about my youngest he is type 1 Diabetes when we go to his Endo in October I m requesting to have him tested. My Oldest daughter is already being tested she has most of the symptoms already.

I was not having D nowhere near as bad as I was, I was going to the bathroom 10 plus times a day and night I was severely gassy, bloated major indigestion But I have 47 yrs of Wheat and Gluten in my Body. I have been off for 6 weeks.

Indigestion was the first thing to go with the gas and the bloating then the nigh time bathroom runs stopped to about 1 time a night. I was sleeping almost all night until I started taking the Vitamins I went to the bathroom a lot yesterday. I did continued to eat Dairy until I read about that. Then I cut that back but still had some digestive issues I noticed when I ate dairy It was like eating wheat Gas Bloating it was awful. So Just a few days ago I got completely off that. Now I'm noticing these Vitamins I'm taking are giving me D. Vitamin C always gives me D Floradix gives me D also I'm guessing because I'm super sensitive right now. I'm taking a store brand of Ferrous Sulfate because Slo-Fe has Lactose in it. I am trying really hard not to get cross contaminated But I live with Gluten eaters and my coworkers are pigs in the office I work in. It's a Process for sure.

[rosetapper23]

Please double-check that you'r taking the Floradix that is gluten free. There are two versions of this iron supplement, and one of them has wheat grass in it.

[Flasaltwater]

Please double-check that you'r taking the Floradix that is gluten free. There are two versions of this iron supplement, and one of them has wheat grass in it.

It doesn't say wheat grass it says Gluten free.

Also the Dr called me this morning and left a msg on my cell telling me that based on my anemia I should follow up with a hematologist. I tried to call her back but was left on hold for probably a good 20 minutes so I hung up and called back and told them I would be in tomorrow to get copies of all my labs and path report. I'll post things I don't understand maybe someone can help me figure it out looking at B-12 levels and all the iron.

[ravenwoodglass]

It doesn't say wheat grass it says Gluten free.

Also the Dr called me this morning and left a msg on my cell telling me that based on my anemia I should follow up with a hematologist. I tried to call her back but was left on hold for probably a good 20 minutes so I hung up and called back and told them I would be in tomorrow to get copies of all my labs and path report. I'll post things I don't understand maybe someone can help me figure it out looking at B-12 levels and all the iron.

Just be sure to read the entire label on all supplements because they can say gluten free and still have wheat grass included in the ingredients. Label regs for supplements and drugs are different than they are for food and wheat and barley can be included in supplements and they can still be labeled gluten-free.

Also if you can get past copies of blood work for you B12 levels that is helpful because they can be going down and still be in a low normal level after you stop utilizing the B12.