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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 FREE Celiac.com email alerts 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Lingering Energy Issues
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6 posts in this topic

I was diagnosed in 2009.

 

The problem I am having, is trying to figure out my lingering energy issues.  Most days, I really don't have energy (I am not depressed).  A very few days out of the year, the stars will align right (because I can be eating the same things, doing the same amount of activity etc...on many of the days I don't have it), and many days I am so depleted (almost a feeling of a negative energy balance) that between my aching muscles and fatigue, it is extremely difficult to do the things I need to do.

 

Since my diagnosis, I know from my doctor that I do need to continue to supplement magnesium and my b vitamins (2 of the things that went down, leading to my diagnosis). 

 

Things I know the energy is not,

 

Thyroid (my levels on the TSH, T3 and FT4 were all smack in the middle)

anemia

low electrolytes (at least of the main 4 that they test for)

mono (I was actually exposed recently by my ex boyfriend)

 

I will say, that my symptoms other than the energy loss, including thinning hair, cold hands and feet, etc.. seem very thyroid like, just apparently, it is not that. 

 

Has anybody struggled with this?  I am so tired of having to kick my butt every morning to get things done, when on the days that I do have energy, everything is so incredibly effortless.  Any advice would be really welcome and appreciated!!!

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I would revisit the thyroid issues. :( TSH should be very near a 1, free T4 and free T3 should both be in the 50-75% range of your lab's normal reference range, and TPO Ab should be very low.  When my TSH is a 2 or above, I feel hypo (cold hands, feet, nose and bum, body temp below 97F, thinning hair, low energy, slightly puffy face, achy joints, dry scaley skin on legs with dry callus like spots on my knees, cracking fingers an heels) even though my doctor told me that because my labs are within the normal range, my symptoms could not possibly be hypothyroid symptoms- he said that the fact that my symptoms were the same, as when my TSH was out of range, was just a coincidence.My FT4 and FT3 were inrange so I was f"fine".... He was an idiot and treated my thyroiditis with total incompetance. My previous doctor did too.

 

Once I got my frees into the right spot, and my TSH below a 1 (0.3) I finally felt good. I wasn't getting tired going up stairs and I actually enjoyed playing and gardening again. Those thyroid ranges aren't right for everyone....

 

Best wishes. I hope you find answers. :)

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I was hoping to see some answers to your post regarding energy. I have energy issues. I know exactly what you mean by the stars aligning and having energy. I think I would do anything to keep it that way, I just don't know what causes the low energy. I'm thinking it is part of Celiac but I can't help but hope there is a better answer than that.

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NVSMom was talking about energy (lack of).  She was just stating that normal "ranges" for thyroid aren't always correct.  My doc (who retired) said that 30 years ago, the TSH reference range was 1 to 3.   Then the range expanded to 5.9.  

 

Anyway, about 12 weeks ago, my TSH was a 4.3.  My new doc was happy with that, but I know that I need to be closer to a 1.  He adjusted my meds and now I'm back to my old self -- full of ENERGY!  When I feel the need to nap or to grab a coffee in the late afternoon, I know my thyroid is off.  I've had Hashi's for almost 20 years, but for the last two it's been whacked out swinging from hypo to hyper.  

 

Another energy drainer.....anemia.  You stated that your tests indicate that you don't have anemia.  Although, your hemoglobin levels might be "normal" your ferritin (iron stores) may not.  This was always overlooked by my doctors.  They'd just focus in on the hemoglobin and often didn't order a ferritin test (all my other iron tests (e.g. saturation etc,) were always normal.  To make matters, worse I had a second anemia, thalassemia (shows as tiny red blood cells MCV).  They focused on that amenia -- not the low iron stores. 

 

So, I'm pretty athletic.  I'd crank on my bike for a good hard ride (50 miles) and wipe out what little iron stores I had.  Then I'd get a heavy period and WHAM!  I was toast!  My hemoglobin would drop and deep fatigue would set in.  It was a vicious cycle.

 

I'm taking iron to build up my ferritin levels.  At least my body has learned to compensate for the other anemia.  I guess that's the reason I didn't make the Olympics!   :lol:

 

What about hormones?  Chronic Fatigue?

 

I hope you find a reason for your fatigue.  Don't give up!

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You seem to already be doing the right things, looking into hormone imbalances and vitamin deficiencies, though getting the actual numbers from your tests so that you can do your own research may be a good next step. Often the "normal" ranges are too wide, and many can still have symptoms when they are near the edges, though many doctors won't consider this for some unknown reason.

I don't get fatigue per se, but I do sometimes get what appears to be something like reactive hyperglycemia which got better for a while, but seems to still arise here and there. My cold feet went away completely when I went gluten free nine months ago but have returned in the past couple weeks, back to throwing a heating pad into my bed so that I can get to sleep at night. I don't yet know if I'll have to wipe out all of the products that are being sold as being gluten free in order to eliminate the parts per million.

I do have low vitamin D and iron levels that I'm working on. I'm hoping that the vitamin D will help keep me from feeling tired after eating, and that iron helps with the cold feet, but I really don't know yet. Getting my B12 up seemed to help with some other symptoms though I also throw in a multivitamin about once a week just to be on the safe side for everything else.

But I think it is time for me to start keeping a food diary, and seriously. I've been avoiding some of my old favorite foods like my smoothies because I'm reacting to something in them, but haven't figured out what. So it may be time to start playing around with some modified versions to narrow things down. At first, I didn't think that dairy was a problem for me, but now I'm not so sure.

I know, not specifically an answer to your question, but sometimes it helps to see what others are considering trying.

On another note entirely, I was doing some research into the causes of celiac and came across some scientific studies that found the molecule, interleukin 15, which actually tells the body to overproduce T cells. Interleukin 15 also has some connections to the Epstein Barr Virus which can cause Chronic Fatigue Syndrome. Once you've had mono (and most of us have, even if you don't remember it), the virus is with you for life so there may not be a solution, but perhaps looking into it could give you some other ideas for how to overcome your fatigue? Mono is also one of the illnesses that some people suspect as a trigger for "turning on" their celiac genes.

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Have your adrenal function checked.  When I went on some adrenal support herbs, it helped a lot with my energy level!  Also, maybe consider other food intolerances or more nutritional deficiencies.

 

Get better.

 

D

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