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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? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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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I've been an iron supplements for over four months because my ferritin was starting to border on too low.  I knew the range I was in was no good for somebody trying to run long distances.

 

 Anyway my iron, ferritin and saturation have been tested three times since May.  I was unaware that my one doctor had run the test back in August  until today. I'm happy to say my ferritin is coming up very nicely. however my iron and saturation are dropping.  they are still within the normal lab ranges which is great. I just don't understand why they've been consistently dropping shouldn't they be going up now that I'm on iron?

 I have some gastropathy and I'm pretty sure the iron pills were making it worse and creating more abdominal pain and nausea so I asked my doctor to be tested recently thinking I'd be safe to get off the supplements.  I already eat An iron-rich diet.  I guess I'm just thinking that if I stopped some kind of iron supplementation with iron levels and saturation dropping the ferritin Is going to get sucked up pretty quickly and I'm going to be right back where I started.  I know it can happen quickly too because I went from normal hemoglobin to very slightly anemic once in 24 hours without eating. It was horrible. I can't imagine walking around like that for months.  I have been very fortunate.

 Anyway, anybody have any experience with serum iron not elevating after starting iron supplements but your ferritin being within normal range or increasing? 

 

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I am a very high mileage distance runner and I've been taking iron pills daily since I was 16, when my ferritin was 0 and my hemoglobin was 90g/L (very, very bad). Since diagnosis/GFD at age 24, I've become much less reliant on iron pills. Previously, I was taking 130+ mg of elemental iron a day to maintain proper bloods (our coach has us our whole team get a CBC done 3x per year). This is a lot of iron and I have no idea why any doctor thought this was ok, but I guess this proves that if you jam enough iron into yourself, you can defy anemia even with untreated celiac disease.

In my last 2.5 years since diagnosis, I've had a bit of a mixed bag of ferritin results. I actually stopped taking iron for a while during my first year and came back with normal-high values, but recently I have been anemic stemming from a very bad glutening I sustained in May. At my 2 month "re-check" my ferritin was better, but still bad (improved from 9 to 20 ng/ml), presumably because my gut had not entirely healed from the previous episode and/or I was experiencing some low level glutening.

So to answer your question... I'm not sure I would worry about the saturation results as I think those can be "off" is when your body is in the state of trying to rectify its low iron status. If your ferritin is going up, things are working. The other thing to know is that if you run a lot, you will need more iron in general as the high impact nature of running damages red blood cells, causing them to have to be replaced more often. Depending on when you were diagnosed, your gut may also be less able to absorb iron than regular folks.

I definitely would not stop taking iron if you are a celiac runner with demonstrated iron issues, especially if you are a pre-menopausal female. If it's bothering your stomach, you might consider switching brands or taking a lower dosage pill more frequently (this is better for absorption anyways). I currently take 60mg of iron per day, but in two pills in addition to keeping on that steak and liver. I've never tried liquid iron, but I know many who vouch for it, so you could try that too.

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8 hours ago, ironictruth said:

I've been an iron supplements for over four months because my ferritin was starting to border on too low.  I knew the range I was in was no good for somebody trying to run long distances.

 

 Anyway my iron, ferritin and saturation have been tested three times since May.  I was unaware that my one doctor had run the test back in August  until today. I'm happy to say my ferritin is coming up very nicely. however my iron and saturation are dropping.  they are still within the normal lab ranges which is great. I just don't understand why they've been consistently dropping shouldn't they be going up now that I'm on iron?

 I have some gastropathy and I'm pretty sure the iron pills were making it worse and creating more abdominal pain and nausea so I asked my doctor to be tested recently thinking I'd be safe to get off the supplements.  I already eat An iron-rich diet.  I guess I'm just thinking that if I stopped some kind of iron supplementation with iron levels and saturation dropping the ferritin Is going to get sucked up pretty quickly and I'm going to be right back where I started.  I know it can happen quickly too because I went from normal hemoglobin to very slightly anemic once in 24 hours without eating. It was horrible. I can't imagine walking around like that for months.  I have been very fortunate.

 Anyway, anybody have any experience with serum iron not elevating after starting iron supplements but your ferritin being within normal range or increasing? 

 

Yeah I had huge issues even with supplementation for years never getting it above 2, I started supplementing vitamin C also and got it up to 6 >.>.  Doctor still wants to put me on a IV. I think it has to do with me power pacing 14+miles a day and working out. I have moved to a sublingual version myself so I can better manage dosing. Taste like blood -_- but I seem to feel better with it. Not able to retest my iron or see a doctor anymore due to loss of insurance.

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I bought some liquid yesterday,  which I read is actually easier on the stomach than pills anyway.

 I am fortunate that I haven't had any major issues with deficiencies.  And that may also be in part Because I have more mild damage and I also am obsessive about making sure I get enough of the nutrients into my diet and in protein shake form. 

I am sorry about your insurance Ennis!  I actually was concerned that I might have to pay for pocket For the test at one point and I called the lab and I want to say it was like under $40 for the test. But don't quote me on it.  So you might want to shop around if you're curious.

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On 10/7/2017 at 12:11 AM, apprehensiveengineer said:

I am a very high mileage distance runner and I've been taking iron pills daily since I was 16, when my ferritin was 0 and my hemoglobin was 90g/L (very, very bad). Since diagnosis/GFD at age 24, I've become much less reliant on iron pills. Previously, I was taking 130+ mg of elemental iron a day to maintain proper bloods (our coach has us our whole team get a CBC done 3x per year). This is a lot of iron and I have no idea why any doctor thought this was ok, but I guess this proves that if you jam enough iron into yourself, you can defy anemia even with untreated celiac disease.

In my last 2.5 years since diagnosis, I've had a bit of a mixed bag of ferritin results. I actually stopped taking iron for a while during my first year and came back with normal-high values, but recently I have been anemic stemming from a very bad glutening I sustained in May. At my 2 month "re-check" my ferritin was better, but still bad (improved from 9 to 20 ng/ml), presumably because my gut had not entirely healed from the previous episode and/or I was experiencing some low level glutening.

So to answer your question... I'm not sure I would worry about the saturation results as I think those can be "off" is when your body is in the state of trying to rectify its low iron status. If your ferritin is going up, things are working. The other thing to know is that if you run a lot, you will need more iron in general as the high impact nature of running damages red blood cells, causing them to have to be replaced more often. Depending on when you were diagnosed, your gut may also be less able to absorb iron than regular folks.

I definitely would not stop taking iron if you are a celiac runner with demonstrated iron issues, especially if you are a pre-menopausal female. If it's bothering your stomach, you might consider switching brands or taking a lower dosage pill more frequently (this is better for absorption anyways). I currently take 60mg of iron per day, but in two pills in addition to keeping on that steak and liver. I've never tried liquid iron, but I know many who vouch for it, so you could try that too.

Thank you! Yes, my intestinal damage was more mild Marsh 2-3A. But I knew with the running on top of that I would need to keep it checked. I honestly thought perhaps I was taking TOO much and this was causing issues. Clearly not the case I guess. I was doing 65 mg with vitamin c most days and some days I alternated between a lower dose 2x a day as you have done. Plus a high iron diet. Cannot say enough good things about Tolerant red lentil pasta. 50% rdv in one serving. And who only eats one serving of pasta? 

I totally forgot about liver. I loved liver as a kid! 

I bought some liquid stuff as I read its easier on the tummy. 

I still feel pretty poorly so am always looking at ways to improve my symptoms. I keep hoping I will find something that explains the flu like symptoms that wax and wane but never turn into the flu. I am nervous this morning. I felt horrible yesterday, slept terribly and have my 2nd half marathon, this morning. And its pouring now! 

 

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2 hours ago, ironictruth said:

Thank you! Yes, my intestinal damage was more mild Marsh 2-3A. But I knew with the running on top of that I would need to keep it checked. I honestly thought perhaps I was taking TOO much and this was causing issues. Clearly not the case I guess. I was doing 65 mg with vitamin c most days and some days I alternated between a lower dose 2x a day as you have done. Plus a high iron diet. Cannot say enough good things about Tolerant red lentil pasta. 50% rdv in one serving. And who only eats one serving of pasta? 

I totally forgot about liver. I loved liver as a kid! 

I bought some liquid stuff as I read its easier on the tummy. 

I still feel pretty poorly so am always looking at ways to improve my symptoms. I keep hoping I will find something that explains the flu like symptoms that wax and wane but never turn into the flu. I am nervous this morning. I felt horrible yesterday, slept terribly and have my 2nd half marathon, this morning. And its pouring now! 

 

Magnesium, if your hurting like the flu, sleeping bad, and running like crazy your depleting your magnesium stores like crazy. I should know well about that -_- I have to take 2-4 times the recommended dose. I use a powder I add to drinks, I use both Doctors Best and Natural Vitality calm, I feel and prefer calm more, but it can cause D and gastric issues. Doctors best seems to make me more relaxed and tired so I take it at night. ALSO look at pumpkin seed protein powder before bed, the zinc, iron, magnesium in combination with the protein and the ability to help your body produce serotonin make it great for a sleep and repair at night protein.

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Good on you for continuing to train! I'd tread a bit cautiously, as injuries are almost purely a function of your system being overloaded with stressors, whether that be too much mileage, too much intensity, poor nutrition/sleep etc. Celiac disease compounds these issues which are common problems with all runners. If I am not feeling good, I take it day by day and do what I can, even if it is not much or not fast (or nothing at all).

I find that running puts your health under a microscope a bit - there's no hiding or pretending away mistakes because the watch does not lie! Often, the first indication that I have been glutened is that I will feel terrible while running - acid reflux, vertigo/dizziness and inability to maintain my normal easy running pace. I think if I did not have this and DH to rely on, I would miss most of the minor CC issues I have had. As a result, I find I am much more conservative than most celiacs with my eating habits - I haven't eaten anything I have not prepared from scratch myself in over a year, and avoid almost all gluten-free substitute products and almost all processed foods. It's certainly a pain, but my ability to run at a high level is more important to me than the normalcy afforded by a more relaxed GFD. Each must find their own balance, however, and I don't judge people for not feeling the same way.  

Although it's possible that you are still recovering from previous stuff, I'd recommend being very conservative with your diet for a bit (search Fasano diet). This is the advice I wished I'd received when I originally began the GFD - it's much easier to figure out if foods are bothering you if you have an optimal baseline to compare with. After being sick for so long, it's sometimes hard to tell what's "normal", so by being conservative for a bit you'll learn what your body is supposed to feel like (I had no idea I'd had a stomach ache for 20 years lol). Then you can add back stuff and have a good idea if it's working or not.

Best of luck with your upcoming training and may the mileage gods be on your side :)

 

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1 hour ago, apprehensiveengineer said:

Good on you for continuing to train! I'd tread a bit cautiously, as injuries are almost purely a function of your system being overloaded with stressors, whether that be too much mileage, too much intensity, poor nutrition/sleep etc. Celiac disease compounds these issues which are common problems with all runners. If I am not feeling good, I take it day by day and do what I can, even if it is not much or not fast (or nothing at all).

I find that running puts your health under a microscope a bit - there's no hiding or pretending away mistakes because the watch does not lie! Often, the first indication that I have been glutened is that I will feel terrible while running - acid reflux, vertigo/dizziness and inability to maintain my normal easy running pace. I think if I did not have this and DH to rely on, I would miss most of the minor CC issues I have had. As a result, I find I am much more conservative than most celiacs with my eating habits - I haven't eaten anything I have not prepared from scratch myself in over a year, and avoid almost all gluten-free substitute products and almost all processed foods. It's certainly a pain, but my ability to run at a high level is more important to me than the normalcy afforded by a more relaxed GFD. Each must find their own balance, however, and I don't judge people for not feeling the same way.  

Although it's possible that you are still recovering from previous stuff, I'd recommend being very conservative with your diet for a bit (search Fasano diet). This is the advice I wished I'd received when I originally began the GFD - it's much easier to figure out if foods are bothering you if you have an optimal baseline to compare with. After being sick for so long, it's sometimes hard to tell what's "normal", so by being conservative for a bit you'll learn what your body is supposed to feel like (I had no idea I'd had a stomach ache for 20 years lol). Then you can add back stuff and have a good idea if it's working or not.

Best of luck with your upcoming training and may the mileage gods be on your side :)

 

By far probably the best advice i have gotten overall. I have been so frustrated with gluten challenges, the diet and the whole process, I have not been as cautious as I could be. In part because the symptoms seem so not text book. 

Granted, I am new to running and just did my second half out if three in nine weeks. I am busting my butt to make sure I get my nutrients. If I do not see another carb for at least two weeks, I would be thrilled. But I have not been as cautious as I know i should be. And Fasano is my doctor. I experienced a lot of wax and wane of symptoms and no "omg this is certainly a glutening". So it is tough for me to know what is what. But it might be best, at least through my next and last race on Turkey Day, to be more cautious. 

Maybe we should not have celebrated dinner out tonight, even with grilling wait and cook staff. 

Thank you!

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13 hours ago, Ennis_TX said:

Magnesium, if your hurting like the flu, sleeping bad, and running like crazy your depleting your magnesium stores like crazy. I should know well about that -_- I have to take 2-4 times the recommended dose. I use a powder I add to drinks, I use both Doctors Best and Natural Vitality calm, I feel and prefer calm more, but it can cause D and gastric issues. Doctors best seems to make me more relaxed and tired so I take it at night. ALSO look at pumpkin seed protein powder before bed, the zinc, iron, magnesium in combination with the protein and the ability to help your body produce serotonin make it great for a sleep and repair at night protein.

Thank you Ennis! You always have great nutrition advice. I bought those nibs. 

I do use magnesium a couple of times of week and am stocked on pumpkin seeds as well as coconut water. I may want to increase the magnesium though. 

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17 minutes ago, ironictruth said:

Thank you Ennis! You always have great nutrition advice. I bought those nibs. 

I do use magnesium a couple of times of week and am stocked on pumpkin seeds as well as coconut water. I may want to increase the magnesium though. 

Hope you like them, they can take some getting used to, but the nutrient profile of them is amazing and they are addictive like M&Ms once you get used to them and mix them in a bowl with a sugar free sweetener. If you do not mind me asking which ones did you get and your opinion on the flavor and how you eat them. I sometimes wonder if I am just broken by cravings lol. I find myself rotating between the ghana light and the ghana french roast nibs for a darker flavor, need to order another 5lbs of Ecuador soon.

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