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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?  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

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Hi!  I had my ferritin tested for the first time recently and although I fell in the "normal" range, I was at the VERY low end of normal and not anywhere close to optimal.  i've been struggling for years with shortness of breath, fatigue, irritability, and lightheadedness, so this discovery makes perfect sense to me. 

 

My doctor suggested I take iron supplements - Slow Fe.  I've started the pills, one 45mg at night with dinner. Although it makes me feel really off in the middle of the night, I'm willing to deal with it in the hopes it'll clear up my issues.  

 

Just curious if anyone has had luck with the supplements. Any thoughts on low ferritin levels. If it helps, I'm Celiac, gluten free since March of this year. Slowly trying to treat all the vitamin deficiencies and hopefully get everything that was effected by my disease back to normal. 

 

Would love any feedback from anyone who has fixed their iron deficiency or is currently struggling as well.  Hopefully I've posted in the right forum! 

 

-Ami 

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Hi Ami,

When I was diagnosed with celiac disease about four years ago, the main symptom was exhaustion and after going through many tests, it turned out that I had extremely low ferritin levels. I almost had zero left in my system.

After being gluten free and taking an iron supplement, I was back to a low normal in about six months.

For me, the celiac disease caused the malabsorption of iron and that is why I became extremely anemic.

Good luck to you!!

Kevin.

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I did take Ferritin. My levels had been low( even though I was supplementing) before going gluten free.  I believe that the gluten free diet and digestive enzymes were a key for me to get them.  When the ferritin level came up, I could breath better.  A pressure I felt in my head went away. 

Dee

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Hi Ami,

I'm in the low ferritin club too. Mine was a lowly 2 at diagnosis and was only up to 9 at about 7 months post diagnosis. It was still that low even after taking 50 mg of iron bisglycinate daily(I think that's the same type of iron that is in Slow FE), but my CBC numbers are much better now. I was still have a lot of low iron symptoms and talked to my GI doc about it. He told me that a person will still likely have symptoms until their ferritin level reaches 50 - even though my labs normal referrence range starts at 10.

If you are on the low side of the range, that could explain why you are still having symptoms for sure. My doc also said it woulld probably take another year for me to get my ferritin number where it should be, so it seems like this isn't a deficiency that corrects itself very fast. More time and patience I guess :-)

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Thanks all! I guess it sounds like I just need to have some patience and faith that going gluten-free and taking supplements will help.  I'm not dangerously low, I don't think (Ferritin = 19) but the lightheaded symptoms scare me. I was reading about getting iron intravenously, but it sounds like I'm not at that point yet.  Husband and I are talking having babies, but I also don't want to hurt the baby in any way with low vitamin levels.  I'm only on day 3 of taking the supplements, and Rome wasn't built in three days....;)

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Iron intake is actually a triplicate kind of deal that involves the intestine that not just absorbs iron, but also stores it for up to three days in case it is needed, and the thyroid sending out something that tells the liver to produce something that allows iron to be absorbed. (Sorry. I don't remember the names of exactly what the thyroid and the liver produce in their roles.) 

So rather than just being a malabsorption issue from damage to the intestines themselves, it could also be an indication of thyroid disease or the liver not functioning ideally.

The liver is pretty heavily reliant on vitamins to do its job but I'm guessing that when they checked you for the iron deficiency, they checked the other vitamins and minerals as well.  But you can look up what foods to eat or avoid to keep the liver function up while you're getting your iron deficiency fixed.

Thyroid disease is common with Celiac so if you haven't had your hormone levels checked, I'd add it to the list of things to do in the future.

The three day storage thing is interesting because we likely do have days where we're not eating foods high in iron, but as long as we do so on a semi-regular basis, the body will work with us.

But I'm not mentioning the liver and thyroid to scare you. I just think this stuff about how the body works (or doesn't) is incredibly interesting.
 

Else, I'd just research side effects so that you can recognize symptoms if they happen. Iron absorbs better on an empty stomach but upsets the stomach so you're supposed to take it with just a little bit of food. Taking any supplement in the morning helps to avoid the sleep disturbances. And having too much iron is also bad so don't forget to follow up in six months to get tested again.

Lamb counts as red meat if you start looking for alternatives to beef to get more iron in your diet.

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Thanks all! I guess it sounds like I just need to have some patience and faith that going gluten-free and taking supplements will help.  I'm not dangerously low, I don't think (Ferritin = 19) but the lightheaded symptoms scare me. I was reading about getting iron intravenously, but it sounds like I'm not at that point yet.  Husband and I are talking having babies, but I also don't want to hurt the baby in any way with low vitamin levels.  I'm only on day 3 of taking the supplements, and Rome wasn't built in three days.... ;)

 

19 - that's high! :D - seriously, mine was down to 10. Even before I knew I had celiac disease I had better luck with GNC's Women's Iron Complete thank the SlowFE. The SlowFE gave me abdominal cramps, even though it's supposed to be gentler. The GNC stuff was way better. I tried about 4 brands before I settled on this one.

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Mine was at 3 in September - I took fairly strong supplements for six months and it's now remaining normal by itself which I am very pleased about! It's made such a difference to how I feel.

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That is good to hear, Katie.  Your levels were so low it was worrisome to me.

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Awww, Laura! :) Yes they're back to where they should be (and my boyfriend and family wish I'd slow down a bit now. Hehe). 

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Hi Ami,

I was low in ferritin for many years (4 was my lowest.) I took iron supplements (various types at various dosages) for years which slowly but successfully raised my ferritin levels, only to have the ferritin drop again when I cut back on the supplements. I cut back because I thought the iron was causing my chronic constipation, a known side effect of iron supplements. Now that I've been diagnosed with celiac (diagnosed Oct, 2013) it's entirely possible that the constipation is caused by that, who really knows. Anyway, my doctor told me enough of the supplements and arranged for me to have iron infusions. I was pretty nervous about these - I had read about nasty side effects. But I went ahead with it and was glad I did. The worst part was the technician finding a vein (mine are hard to find). I had no side effects. The infusions (I had 3) we're painless, and a subsequent blood test showed my ferritin level to be 600. (Yes, 600!!) I freaked out a little bit about that, but she said not to worry- the level will be high until it levels off. My last blood test, 3 months ago and 4 months after the infusions, was 180. I had a lot of energy and wasn't dragging at 2 pm everyday. At some point I'll get my ferritin tested again, but for now I feel good. Best of luck to you!

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