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Hello... New to the board, first post :). Glad I found you... 

History.... 

I had been suffering with loose soft frequent stools and gas/bloating and lethargy for a while... About 15 months ago I brought it up to my PCP, and she suggested running a test for celiac. It came back negative. Iron levels were a bit low so started on a supplement. The last year the above symptoms have worsened.. OBGYN attributed it to hormonal changes (im 46).   Two months ago I went back to see my PCP again (her nurse this time) for an annual physical and blood work. Talked to her about my symptoms again... So we ran a full panel blood work (no celiac test).  Results came back with dangerously low iron, low vitamin D.  Based on my symptoms she immediately thought there was something blocking the absorption of iron in my body and brought up gluten. We didn't test this time but rather, she wanted me to completely give up gluten for 3 to 4 weeks, double up on iron supplements and see how I felt after a month. I should add that I'm also vegan so consume plenty of greens along with iron supplements so I should not be deficient in iron. 

It's now been 8 weeks gluten free (with the possible screw up, as im still learning what to avoid)... And while my bowel issues have gotten 90% better (solid stools, far less flatulence), I'm Still extremely fatigued. I can get 8 full hours of sleep, yet feel I still cannot function with such low energy levels. I have to nap every day. I was getting dizzy spells during my workouts.  

I feel after 8 weeks gluten-free my iron levels should have improved but I still feel Lethargic as all hell and I just want my life back. Doc says it could take 6 months for iron levels to restore. Is this the case with any of you? 

I should add that I'm a very active mom of two. I workout every day and am in very good physical condition, I eat very well.. So this should all be supplying my body with a lot of energy. 

I feel at a loss... I want my life back. 

Any words of wisdom? 

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2 hours ago, Michelina01 said:

Hello... New to the board, first post :). Glad I found you... 

History.... 

I had been suffering with loose soft frequent stools and gas/bloating and lethargy for a while... About 15 months ago I brought it up to my PCP, and she suggested running a test for celiac. It came back negative. Iron levels were a bit low so started on a supplement. The last year the above symptoms have worsened.. OBGYN attributed it to hormonal changes (im 46).   Two months ago I went back to see my PCP again (her nurse this time) for an annual physical and blood work. Talked to her about my symptoms again... So we ran a full panel blood work (no celiac test).  Results came back with dangerously low iron, low vitamin D.  Based on my symptoms she immediately thought there was something blocking the absorption of iron in my body and brought up gluten. We didn't test this time but rather, she wanted me to completely give up gluten for 3 to 4 weeks, double up on iron supplements and see how I felt after a month. I should add that I'm also vegan so consume plenty of greens along with iron supplements so I should not be deficient in iron. 

It's now been 8 weeks gluten free (with the possible screw up, as im still learning what to avoid)... And while my bowel issues have gotten 90% better (solid stools, far less flatulence), I'm Still extremely fatigued. I can get 8 full hours of sleep, yet feel I still cannot function with such low energy levels. I have to nap every day. I was getting dizzy spells during my workouts.  

I feel after 8 weeks gluten-free my iron levels should have improved but I still feel Lethargic as all hell and I just want my life back. Doc says it could take 6 months for iron levels to restore. Is this the case with any of you? 

I should add that I'm a very active mom of two. I workout every day and am in very good physical condition, I eat very well.. So this should all be supplying my body with a lot of energy. 

I feel at a loss... I want my life back. 

Any words of wisdom? 

I am sorry that you are so anemic.  I am also sorry that your doctor may be mis-informed about celiac disease.  Exactly what celiac tests were given?  For example, the common screening  test is the TTG.  Great test but it does not catch all celiacs, not to mention that some 10% of celiacs are seronegative.  Your PCP, after failing to improve dramatically on iron supplements, should have referred you to a GI.  Unfortunately, all celiac testing requires you to be on a full gluten diet (like 8 weeks prior to a blood draw , but only two weeks prior to a endoscopy).  It sounds like you are responding slowly to the gluten-free diet, but that is because it takes time to master the diet.  But it could be something else, like Crohn’s.  

I was diagnosed with just anemia.  I had iron-deficiency and Thalassemia (genetic).   My chronically low hemoglobin was blamed on my Thals.  Later, it dropped even more and that was blamed on perimenopause.  My periods (30 days) were so long, that I was out of breath.  My GYN recommended surgery, but I wisely resisted after my PCP and another GYN suggested throughly checking all other causes of iron-deficiency (ferritin 2).     My new GI (also did a colonoscopy for a cancer screening ) ran a FULL celiac panel which only had one positive on the DGP IgA.  My biopsies revealed moderate to severe patches of villi damage.  My anemia resolved within a few months, but I had been preparing the gluten-free diet for a dozen years for my husband.  So, I did not have to learn a new diet.  

Do not work out if your anemia is bad (below a 7) as you can have severe complications like a heart attack).  

Did you get a COMPLETE thyroid panel as well?  

You are going to have to decide to either treat yourself like a celiac or go back on gluten and get tested properly.  I can tell you that a firm diagnosis has been very beneficial to me.  I get a lot of support from family, friends and medical.  My doctors are on the lookout for new autoimmune issues as you can continue to develop them throughout your life (I have three now).  

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Ditto on cycling lady but a few other things to consider if perhaps it is celiac and they did not catch it on the blood panel (they did not do a complete blood panel like so many fail to do) or if your one of those that test negative on blood but still react with damaged intestines.
https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/screening/
Assuming your celiac like what it sound like you might see about supplementing magnesium (Doctors Best easier on the gut or Natural Vitality Calm) this is a major issue with many celiacs and if your physically active your depleting it like crazy (look up the deficiency symptoms) also, and b-vitamins. ESPECIALLY if your vegan your going to need to. I use 2 different liquid supplements (Liquid Health Stress & Energy and their Neurological Support 1tbsp each 3 times a day, they also make D3 Drops) for this and I use KAL nutritional yeast in 2 meals a day either as a shaken on condiment or in a vegan cheese sauce. These should help more with energy levels.

I am always using Pea Protein (Naked Pea, Growing Naturals), Pumpkin seed protein (Jarrow, Julian Bakery) for good sources of iron and protein in smoothies, vegan ice cream, and in baked goods. A a protein shake to sip on throughout the day with some healthy fats like coconut milk and blended in almond butter in a shaker bottle might help.

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On 5/27/2018 at 8:27 AM, Michelina01 said:

Hello... New to the board, first post :). Glad I found you... 

History.... 

I had been suffering with loose soft frequent stools and gas/bloating and lethargy for a while... About 15 months ago I brought it up to my PCP, and she suggested running a test for celiac. It came back negative. Iron levels were a bit low so started on a supplement. The last year the above symptoms have worsened.. OBGYN attributed it to hormonal changes (im 46).   Two months ago I went back to see my PCP again (her nurse this time) for an annual physical and blood work. Talked to her about my symptoms again... So we ran a full panel blood work (no celiac test).  Results came back with dangerously low iron, low vitamin D.  Based on my symptoms she immediately thought there was something blocking the absorption of iron in my body and brought up gluten. We didn't test this time but rather, she wanted me to completely give up gluten for 3 to 4 weeks, double up on iron supplements and see how I felt after a month. I should add that I'm also vegan so consume plenty of greens along with iron supplements so I should not be deficient in iron. 

It's now been 8 weeks gluten free (with the possible screw up, as im still learning what to avoid)... And while my bowel issues have gotten 90% better (solid stools, far less flatulence), I'm Still extremely fatigued. I can get 8 full hours of sleep, yet feel I still cannot function with such low energy levels. I have to nap every day. I was getting dizzy spells during my workouts.  

I feel after 8 weeks gluten-free my iron levels should have improved but I still feel Lethargic as all hell and I just want my life back. Doc says it could take 6 months for iron levels to restore. Is this the case with any of you? 

I should add that I'm a very active mom of two. I workout every day and am in very good physical condition, I eat very well.. So this should all be supplying my body with a lot of energy. 

I feel at a loss... I want my life back. 

Any words of wisdom? 

Did your doctor check your vitamin B12 (cobalamin) level?  Vegetarians often have low vitamin B12 which can negatively effect iron absorption.   Folate, zinc,  and copper levels should be checked, too.  There's more to correcting anemia than just taking iron supplements.  

 

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It's my understanding that our bodies do not absorb non-heme iron (iron found in vegetables) as well as we absorb heme iron (found in meat). When you said you were vegan AND you work out frequently, I was not surprised that your iron stores are not up yet after 8 weeks. 

Even without celiac, some people have a hard time absorbing iron and it can take a while to "fill up the tank" so to speak, especially if you're depleting your store by working out heavily or excessively. I'm not saying you are, but it's something to consider. 

Some types of iron absorb better than others, vitamin C aids in absorption and iron should be taken on an empty stomach away from calcium and tannins (in tea and coffee). Here's a great article about the different kinds of iron and their absorption and toxicity: https://medium.com/@learngirl/iron-supplements-explained-61c1ce570313 

Hope that helps!

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Michelina01,

Ditto what everyone else said.

Especially taking some magnesium Glycinate or Magnesium Citrate to help with your energy levels.

Here a thread that might help you it is about someone else's journey with low stomach acid.

also you might try taking some BetaineHCL (powdered stomach acid) when you take your Iron it can help improve your iron absorption.

A strong acid is needed for good iron absorption.

Here is link that explains how low stomach acid can limit our iron absorption.

https://www.ncbi.nlm.nih.gov/pubmed/7286584/

Taking powdered stomach acid (betaineHCL) helped my absorption of Magnesium and thus my energy levels.  Make sure to take with at least a glass of water so the stomach acid can be activated properly.  Tea will work too.

***this is not medical advice but taking BetaineHCL can help many people GI problems. here is a case study about it.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4991651/

I only know it helped me.

good luck on your continued journey.

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things”

Posterboy by the Grace of God,

 

 

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