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gluten-free Almost A Year Now Anemic
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Edited to add....I shouldn't have said Anemic but I can't edit the post topic . I haven't been told I am Anemic...just have low iron.

Hi,

It's been so long since I've visited here. Life's been busy. I have been gluten free since last December. I had my biopsy and bloodtest and both negative for celiac. I'm not concerned about that because I do know gluten bothers me. Last December my ferritin was 9 (everything else looked normal) and if I hadn't asked about if I should do anything about it the dr wouldn't have even thought twice about it. She told me to take a multivitamin with iron. Well, that made me nauseous so I just stopped taking it. Over the past year I felt my diet has been healthy. I've been getting more headaches again and my hair seemed to be everywhere (falliing out) and I just haven't had much modivation or energy. So I went to the dr's last week to check my iron again. This time my ferritin is 8 and my iron saturation numbers are low now. Last year my iron was 128 (normal value is 50-170) last week it was 40. My iron saturation last year was 33% (normal range is 15-50) last week it was 10. So this could be why I'm feeling the way I do. The dr put me on iron supplements and wants to retest in a month.

So my question is. The one thing I haven't looked into with going gluten free is my makeup. My friend told me to get rid of it all and only go with gluten free. Would this really make that much of a difference? I just can't see that affecting my iron...but could it? Or is it because I'm not eating all the fortified breads and cereals anymore?

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I think the only makeup you'd need to be worried about is lipstick. Also, you should probably switch to gluten-free shampoo and conditioner because they can get on your lips and in your mouth while you're showering. Sometimes the damaged area of the intestinal lining takes a long time to repair itself....and sometimes it never completely returns to normal. The area where iron is absorbed is one of the first areas that can get destroyed by gluten. For some of us, the only solution is to receive intravenous iron infusions. Your doctor may be unaware of this option (many doctors truly have never heard of iron infusions). It's very effective, and you'd only need to get the infusions weekly for four weeks...and then repeat the four weeks of infusions if your numbers fall again. If your doctor has never heard of iron infusions, he should contact your local hospital's infusion center to inquire about the correct dose to prescribe.

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Well, when the doctor tells you to take a vitamin..... iron absorption is helped by the consumption of proper nutrients, all working together. So you should be taking a gluten free B complex, a multivitamin (you can buy these without iron, like the "senior" or "over 55 plus" versions) and a calcium/D/magnesium type of mineral supplement. You can take some of this in the am and some of this in the pm, and figure out what time of day and under what circumstances the iron supplement fits into this- but make sure you get those B vitamins and the mineral supplements into you.

Two other less obvious ways to get iron are to invent ways to put blackstrap molasses into your cooking (great way to make mock "rye" bread, spice muffins, or gingersnaps) or just eat a spoonful of it a day, and to use a dedicated gluten free cast iron pan to do as much of your cooking in, as possible. You can also bake breads, especially almond breads, in small cast iron skillets, which works well if you preheat the pan with oil, then pour in the batter, to get a nice crust.

Do you know if you are one of the minority of celiacs/gluten intolerants who react to gluten free oats ? You may have to tweak your diet.

I am sort of a fanatic about gluten free cosmetics as I have extremely sensitive skin, but I also have pets that routinely lick me, and with the dog with the wheat allergy, there is no way I am putting a wheat product on anything here that he can possibly lick. We also had to put the cat on wheat free food, as she was not only licking me, but drinking out of the dog's dish routinely, and I don't want the dog having an allergy attack. Pets and pet foods can be another vector of accidental cross contamination that people do not think about, at first.

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Well, when the doctor tells you to take a vitamin..... iron absorption is helped by the consumption of proper nutrients, all working together. So you should be taking a gluten free B complex, a multivitamin (you can buy these without iron, like the "senior" or "over 55 plus" versions) and a calcium/D/magnesium type of mineral supplement. You can take some of this in the am and some of this in the pm, and figure out what time of day and under what circumstances the iron supplement fits into this- but make sure you get those B vitamins and the mineral supplements into you.

Two other less obvious ways to get iron are to invent ways to put blackstrap molasses into your cooking (great way to make mock "rye" bread, spice muffins, or gingersnaps) or just eat a spoonful of it a day, and to use a dedicated gluten free cast iron pan to do as much of your cooking in, as possible. You can also bake breads, especially almond breads, in small cast iron skillets, which works well if you preheat the pan with oil, then pour in the batter, to get a nice crust.

Do you know if you are one of the minority of celiacs/gluten intolerants who react to gluten free oats ? You may have to tweak your diet.

I am sort of a fanatic about gluten free cosmetics as I have extremely sensitive skin, but I also have pets that routinely lick me, and with the dog with the wheat allergy, there is no way I am putting a wheat product on anything here that he can possibly lick. We also had to put the cat on wheat free food, as she was not only licking me, but drinking out of the dog's dish routinely, and I don't want the dog having an allergy attack. Pets and pet foods can be another vector of accidental cross contamination that people do not think about, at first.

....and wheat just AIN'T natural for our furry friends.....
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Re: low iron/anemia and celiac My daughter was diagnosed with celiac in February 2012 after a biopsy. Much earlier she had been found to have low iron and we corrected that with twice-daily spoonfuls of Palafer, a liquid iron supplment. We didn't figure out she was celiac for a while but her iron levels were okay at the time of diagnosis. Since then I've worked hard to go gluten-free -- the few times we knew she'd had an "oops" moment and ingested something with gluten, she would get a stomach ache about 2 hours afterwards. It was a specific type of pain that came in waves and although pepto-bismol helped with the pain, I knew that damage was occuring. Still, she has had only three of those incidents since February. However for the past couple of months, she has been pale and last week, she was cold to the touch even soon after a hot shower. She's had a blood test getting ready for her check-up but in the meantime, I've put her back on iron supplments and I feel discouraged.

What I don't understand is this: can an otherwise "healthy (i.e.gluten-free) celiac still become anemic or get low iron? Is it just the state of being celiac OR does the low iron suggest that she is somehow still ingesting gluten but not getting the tell-tale stomach pains? I can treat the low iron but I'm really concerned about how to pinpoint how and when she might be getting gluten. Does anyone know if low iron is very common in celiac patients? I've now started her on Iberogast to help improve her digestion overall but I am really worried about how the low iron came about and what I can do to help her. Thanks!

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....and wheat just AIN'T natural for our furry friends.....

That is SO true! I had a German Shepherd that would go into horrible, 15 minute or longer seizures at least monthly. The vet didn't believe us about the length and told us that more than about 5 minutes would kill her. We timed them and they were much longer than 5 minutes. Anyway, they were caused by wheat. I researched heavily because the vet just wanted to do what most doctors do and prescribe something. Well, the root cause was never investigated and I found multiple cases of wheat causing seizures in animals. So I switched to non-wheat containing foods and she never had another. I eventually put all 3 dogs on grain free rather than just wheat free.

What's interesting about animals with intolerance for wheat is that it in many ways mimics what we go through. Lethargy, obvious pain, hair falling out in heavy clumps. Once we removed it the dogs' hair (all 3 actually) became shiny and stopped falling out heavily. Even our new German Shepherd (Shelby passed away at 11 years of age) does not shed too badly for that breed since she's on gluten-free food. All our dogs have remained gluten-free and I don't have to worry about them licking me accidentally. It's a great relief for the dogs and it keeps me safe as well.

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Re: low iron/anemia and celiac My daughter was diagnosed with celiac in February 2012 after a biopsy. Much earlier she had been found to have low iron and we corrected that with twice-daily spoonfuls of Palafer, a liquid iron supplment. We didn't figure out she was celiac for a while but her iron levels were okay at the time of diagnosis. Since then I've worked hard to go gluten-free -- the few times we knew she'd had an "oops" moment and ingested something with gluten, she would get a stomach ache about 2 hours afterwards. It was a specific type of pain that came in waves and although pepto-bismol helped with the pain, I knew that damage was occuring. Still, she has had only three of those incidents since February. However for the past couple of months, she has been pale and last week, she was cold to the touch even soon after a hot shower. She's had a blood test getting ready for her check-up but in the meantime, I've put her back on iron supplments and I feel discouraged.

What I don't understand is this: can an otherwise "healthy (i.e.gluten-free) celiac still become anemic or get low iron? Is it just the state of being celiac OR does the low iron suggest that she is somehow still ingesting gluten but not getting the tell-tale stomach pains? I can treat the low iron but I'm really concerned about how to pinpoint how and when she might be getting gluten. Does anyone know if low iron is very common in celiac patients? I've now started her on Iberogast to help improve her digestion overall but I am really worried about how the low iron came about and what I can do to help her. Thanks!

Low iron is very common in celiacs. All my blood work and my biopsies came back negative, but I had been gluten-free and that could be why. So the only indication I had that anything was out of the ordinary, other than visual damage to my stomach (erosive gastritis), was low iron. It's not low enough to require treatment, but it does require daily supplementation. My gastro told me to never stop taking iron, D3 (5,000 IU), calcium, B-complex, multivitamin, magnesium, Omega-3. I'm assuming in some cases additional iron may be needed than a standard RDA amount? I'm not positive so the doc would be best to ask, but if a normal person needs a certain amount it seems likely a celiac could need additional intake. If absorption is an issue then it's likely to be lower than normal.

Foods are the best bet to get iron to absorb, but in the absence of enough quantity I don't see a way around supplementing. Plus, I wouldn't ever stop taking it if anemia is an issue. Just like a multivitamin, it's needed forever unless directed to stop. Lots of vitamins are needed for celiacs and you can't normally over-do it with water soluble vitamins. They just come out in the urine if not used by the body. The fat soluble vitamins must be taken with caution because they are not released easily and can achieve toxic levels if taken in doses too high (Vitamin A, vitamin K are two that come to mind).

I'd talk to the doc and find out how much is too much iron. Taking a safe amount is critical when the blood is low on it, but care has to be taken because iron causes some to have constiptation and other side effects in large doses (some in normal doses as well).

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Izzy,

You can have your daughter tested periodically to see if the damage to her gut is improving or not. If her numbers go up or fail to go down, then she may, in fact, be ingesting gluten periodically, which might be causing the iron anemia. There are many sneaky ways that gluten can get into her diet--from a sweet aunt kissing her on the lips while wearing regular lipstick to using a shampoo that isn't gluten free to someone feeding her a food with cinnamon that wasn't gluten free (cinnamon is what gets me periodically--when people buy it in bulk, it oftentimes contains an anti-clumping ingredient that has gluten in it).

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My 5 yo celiac son has been gluten free almost forever, but he is anemic. September 2011 his ferritin was 13 and his TIBC 437. We got even stricter about gluten free, new toaster, new utensils, more careful eating out. But he still does get glutened almost every time we eat out and sometimes in school. Anyway, November 2012 and his ferritin is now down to 7. So frustrating!

Glad I read the responses. I have bulk cinnamon, never crossed my mind that it might not be gluten free. Argh.

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