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Anemia


mom

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mom Rookie

:o Hey guys

I am now into 6 months of gluten free dieting and am still fighting anemia. My damage is severe in my small intestine, so my iron is slow toabsorb I am taking supplements and eating spinach etc. Even though there is still progress in my nutrition going well. I am still going to be scheduled for iron infusion this month. My whole point to this story, is that a good GI doc is well worth the time and effort to find and hold on to. I am blessed with mine. He is interested in my continuing health. I am also being checked out for other malfunctions that go along with celiac disease(thyroid) for one. I just hear so many negative stories on doctors that I just thought that I might add a glimmer or ray of hope out-there!

mom :)B)


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Rikki Tikki Explorer

Mom:

I am happy that you have a good doctor. Your right they are hard to find. Since mine diagnosed me with celiac he was finished and I was left on my own. Hold onto him! ;)

debm5 Newbie

I also had anemia. My doctor put me on iv iron therapy. This was back in Sept. It brought my levels back to normal. The iron tabs did really nothing for me. I am having a cbc tomorrow. I am feeling a bit run down, but today I had a non epi seizure. They wipe me out. My spells show to be on of of the side effect to celiac, but the doctors say they don't think so,( Gi doc & neuro docs). If you have a doctor that believes you, GOD BLESS HIM!!!

Debbie

------------------------------

july-o4, positve biopsy for celiac disease. dec/04 h.pylori.

gluten-free since aug/04 (glutened accidental several times)

zarfstertugboat Newbie
:blink: hey mom, ....... nice to hear you have a good dr. ....they are hard to find. ...........one of my drs. says that my iron is ok, the other one says its low. do you know what the numbers should be? zarf (zarfstertugboat) HI.
mom Rookie

:D Thank you all for the info and helpful comments on this subject. I will move on to the infusion next week, feeling more secure than I would have.

Mom :):P;)

  • 1 month later...
julie5914 Contributor

Hey there,

Your hematocrit should be about 37-38 or above. Your hemoglobin should be 12 or above. The lowest I have been tested at was 30 and 10 and I responded to therapy through slow release pills. I am sorry some of you are having to do the infusions, but it is good that you have a doctor that is taking care of you and not just telling you to eat more veggies and meat!

  • 2 months later...
perfect010 Newbie

Well, low iron here's one for ya. My level was down to 7 one time and I had to have a blood transfusion. that was three years agao. Guess what I do to keep my iron up, and believe me I've done my research, Organic Full Flavor Black Strap Molasses, yeah you've got it right molasses. Look on the label, you will see that iron is highest in this than anything else i've ever eaten. It depends on the brand but you can find up to 70% of the daily recommended in some of the molasseses and others are only 20%. I just keep it in the fridge and once or twice a day I take a tablespoon and swallow it down. It is not the worst , i guess becasue I keep it cold. Drinking orange juice with your iron helps it absorb also, least that's what my dr told me. And did you know if you are eating spinach for iron you should eat it raw? In fact anytime you can eat your food raw, you are definitely getting the most out of it. I don't eat meat raw, but you know the stuff you can eat raw I do.


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jenvan Collaborator

mom--

i had an infusion done earlier this year, and it has kept my iron levels up, since i was severe before. i am still in the normal range, so it is a treatment i'd definitely recommend. just make sure they test u for an allergy to it before you get the full infusion...

Corrine Rookie

Is low iron levels a problem even after being on gluten free diet for some time? My sister in law is having problems with her iron level and has been gluten-free for 4years.

Canadian Karen Community Regular

Low iron levels can be an ongoing problem despite a gluten free diet. I have been anemic my whole life. I can remember as a child getting my finger pricked every week to get my blood tested and ALWAYS being on iron supplements. Since my celiac kicked in in my early 20's, absorbing iron has been quite difficult for me. I have found the I can absorb best the Liquid Iron. Maybe because it is liquid it absorbs quicker before the celiac has a chance to get rid of it..... I was on that for all my pregnancies where my iron went dangerously low......

Karen

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    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
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      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
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    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
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      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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