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Still So Fatigued...

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Hi all,

I haven't been to the forum for a while, so a quick recap: Got really ill (downhill for years, then acutely), misdiagnosed terribly for who knows how long, finally diagnosed February '09. I had a ton of non-GI issues, the longest lasting seems to be fatigue. The brain-fog, neuro, and balance issues have gotten much, much better since first going grain-free, and now I'm on GAPS diet.

It's been 3 years. I still am not well enough to have a steady job or even really take care of myself. I need constant food (eating many more calories than "needed" for my weight), I'm underweight, have to be careful with how much energy I expend - that is for many reasons. 1-My weight drops if I do too much (I eat as often as I can!). 2-I fatigue easily. Not as bad as before, but still pretty bad. I'm sure my grandmother has more stamina than I, and she's 92 (of course, she rocks, but that's another story!). 3-If I over-exert myself, it's a multi-day recovery.

I think I eat very well (lots of organics, ALL home-prepared foods), and take care of myself physically/mentally as well as I can.

At this point, I just don't know if there is anything else proactive I can do, or if I just have to keep doing what I'm doing!

Blood work is all good, with the exception of iron that I have a hard time keeping up to a reasonable level. I have kind of heavy periods, but am unable to take any sort of birth control/hormones to regulate it. I am super sensitive to EVERYTHING. I haven't even taken as much as an advil in six months (they rip up my stomach and make me sleepy).

My doctors don't know what else to test...and frankly, I'm in a place where I'm going to need to apply for insurance soon, so I don't want to get "pre-existing condition" tagged.

Mostly I'm ranting and venting, but maybe I can come up with some questions that you experienced, helpful people can answer.

-Does a Celiac Dx create problems for getting health insurance?

-What else can I ask my doc to test for? They've tested thyroid, and a bunch of other "standard" blood work. In my initial diagnostic journey, they tested liver, heart, brain CT scan, MRIs, x-rays, pancreas, ...pretty much haven't found anything other than Celiac that is "clinically" wrong....although there were some indicators they missed along the way.

-I'm learning to live a slower life, but I'm going kind of stir-crazy. Trying to start a home-based business I can do part time when I'm able...but I don't know how hard to push myself. It's not like I can exercise and just push through it and be better. I try to walk regularly (about 20 minutes average...some days only 5-6, others I can go for close to an hour). I don't have money to do anything...just scraping by as it is...so, I guess I don't know what to do with my time! I find that when I'm physically tired (a majority of the time), I don't have mental energy either, so reading, writing, etc aren't effective/fun/productive. So, I guess my question here is, for those of you who have dealt with extreme fatigue, how do you structure your time so you don't feel like a total couch potato? I tend to start projects when I have energy, but then get fatigued for many days and either lose interest or momentum.

Would love to hear your thoughts!

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Golly, that sounds really miserable. Reading your post, I kept thinking of my neice who may be about your age. Her mother (my sister) is gluten intolerant (no diagnosis), my neice is diagnosed celiac, but also chronic fatigue syndrome. She lives a life very similar to yours. She lives alone, is able to maintain her own home (which belongs to my sister and who helps her out a lot). To avoid going totally stir she holds a part-time job where they appreciate her work and her disability, and allow her quite a bit of flexiibility in the hours she works. She does not travel in commute hours, for example, and they understand if she cannot make it on a given day. It takes her most of the weekend to recover from her exertions during the week. She never travels because it takes too much out of her, especially in trying to organize her food. So she never makes it to family get togethers and is rather isolated from the rest of the family (only she and my sister live in the area she lives -- for everyone else it is a flying journey to see her or for her to see us.) For exercise she does work in her garden where she does grow quite a few of her own vegetables.

Now bear in mind, my sister does lots of things for her, like getting her car serviced, buying compost from the garden center, pays to have her lawn mown and hedges trimmed amd heavy work done in the garden, pays the property taxes on the house, does baking and occasional cooking for her and just plain makes sure that she does not wear herself out. The rest of the family (some of whom are in denial about their own celiac issues) cannot believe that she is really that disabled. She is able to and does take constant pain medication. as does my sister who has parasympathetic dystrophy and chemical sensitivities on top of the food issues. My sister says that my neice does not share a lot of her problems with her so there may be other things I don't know about.

I am sorry that I don't hae a lot to offer except a shoulder to lean on and a cup of tea :)

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I wish I had advice for you. I have had chronic fatigue for 3 years. After extensive testing for EVERYTHING I've been diagnosed with chronic mono and found to have a chiari malformation.

Basically I have to work in order to have insurance so really going to work is all I get done and it easily overwhelms me. I do the minimum required at home in regards to cooking, dishes, cleaning the bathroom, and laundry. If I get a burst of energy and try vacuuming, mopping, ect. I pay for the next week or so.

I do hope you get some answers soon! Wish I was of more help!

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Thanks for the sympathies. I'm still hoping there will be a way to crawl out of this hole.

Isn't chronic fatigue syndrome considered a diagnosis based on excluding everything else they can come up with to test? Please correct me if I'm wrong. There seems to also be a variety of theories on the best treatment for it.

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Thanks for the sympathies. I'm still hoping there will be a way to crawl out of this hole.

Isn't chronic fatigue syndrome considered a diagnosis based on excluding everything else they can come up with to test? Please correct me if I'm wrong. There seems to also be a variety of theories on the best treatment for it.

Yes, unfortunately CFS can only be diagnosed by eliminating everything else. My DH (Dear Husband) is a sufferer of CFS, diagnosed back in the early 80's. When he has his routine bloods done, his Doctor tells him he's the healthiest, sick person he knows ;), everything is normal (he's 66). The only treatment is wiping out everything you eat that makes you sick and rest, especially rest. Salicylates are poison for him. His evening meal consists of meat (mainly chicken or pork), potatoes and lettuce followed up by a pear or 2 without the skin. Has soy milk on his rice bubbles. He finds he feels better after protein so he has a feed of eggs regularly for lunch.

I hope you can eventually find your way to the top. Fatigue is a real b#$%@.

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Yes, unfortunately CFS can only be diagnosed by eliminating everything else. My DH (Dear Husband) is a sufferer of CFS, diagnosed back in the early 80's. When he has his routine bloods done, his Doctor tells him he's the healthiest, sick person he knows ;), everything is normal (he's 66). The only treatment is wiping out everything you eat that makes you sick and rest, especially rest. Salicylates are poison for him. His evening meal consists of meat (mainly chicken or pork), potatoes and lettuce followed up by a pear or 2 without the skin. Has soy milk on his rice bubbles. He finds he feels better after protein so he has a feed of eggs regularly for lunch.

I hope you can eventually find your way to the top. Fatigue is a real b#$%@.

hi ,i am new here .good luck to you .g.gif

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Hi all,

I haven't been to the forum for a while, so a quick recap: Got really ill (downhill for years, then acutely), misdiagnosed terribly for who knows how long, finally diagnosed February '09. I had a ton of non-GI issues, the longest lasting seems to be fatigue. The brain-fog, neuro, and balance issues have gotten much, much better since first going grain-free, and now I'm on GAPS diet.

It's been 3 years. I still am not well enough to have a steady job or even really take care of myself. I need constant food (eating many more calories than "needed" for my weight), I'm underweight, have to be careful with how much energy I expend - that is for many reasons. 1-My weight drops if I do too much (I eat as often as I can!). 2-I fatigue easily. Not as bad as before, but still pretty bad. I'm sure my grandmother has more stamina than I, and she's 92 (of course, she rocks, but that's another story!). 3-If I over-exert myself, it's a multi-day recovery.

I think I eat very well (lots of organics, ALL home-prepared foods), and take care of myself physically/mentally as well as I can.

At this point, I just don't know if there is anything else proactive I can do, or if I just have to keep doing what I'm doing!

Blood work is all good, with the exception of iron that I have a hard time keeping up to a reasonable level. I have kind of heavy periods, but am unable to take any sort of birth control/hormones to regulate it. I am super sensitive to EVERYTHING. I haven't even taken as much as an advil in six months (they rip up my stomach and make me sleepy).

My doctors don't know what else to test...and frankly, I'm in a place where I'm going to need to apply for insurance soon, so I don't want to get "pre-existing condition" tagged.

Mostly I'm ranting and venting, but maybe I can come up with some questions that you experienced, helpful people can answer.

-Does a Celiac Dx create problems for getting health insurance?

-What else can I ask my doc to test for? They've tested thyroid, and a bunch of other "standard" blood work. In my initial diagnostic journey, they tested liver, heart, brain CT scan, MRIs, x-rays, pancreas, ...pretty much haven't found anything other than Celiac that is "clinically" wrong....although there were some indicators they missed along the way.

-I'm learning to live a slower life, but I'm going kind of stir-crazy. Trying to start a home-based business I can do part time when I'm able...but I don't know how hard to push myself. It's not like I can exercise and just push through it and be better. I try to walk regularly (about 20 minutes average...some days only 5-6, others I can go for close to an hour). I don't have money to do anything...just scraping by as it is...so, I guess I don't know what to do with my time! I find that when I'm physically tired (a majority of the time), I don't have mental energy either, so reading, writing, etc aren't effective/fun/productive. So, I guess my question here is, for those of you who have dealt with extreme fatigue, how do you structure your time so you don't feel like a total couch potato? I tend to start projects when I have energy, but then get fatigued for many days and either lose interest or momentum.

Would love to hear your thoughts!

If you don't already have, you need to get, copies of all your lab work. If you are having trouble maintaining your iron level, I would wonder if your stomache acid is too low. Fatigue, I would be wondering about B12 level. If you have had a B12 level done and it is not well over 500, try supplementing that. However, I am not sure that would be the complete answer untill you can maintain your iron level. good luck

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My B12 is above normal and stomach acid seems to be fine now (I was having heartburn/ulcer type of issues, went on the GAPS diet and that resolved. Supplementing at that time was painful). Is there a stomach acid test?

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My B12 is above normal and stomach acid seems to be fine now (I was having heartburn/ulcer type of issues, went on the GAPS diet and that resolved. Supplementing at that time was painful). Is there a stomach acid test?

What's the definition of normal for B12 and iron? I have seen a lot of people test 'normal' or 'within range' for a lot of things, but for that particular person, it's not enough. I need more iron than than 'normal'. Also, you mentioned problems with supplementation. Have you had any success with sublinguals?

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What's the definition of normal for B12 and iron? I have seen a lot of people test 'normal' or 'within range' for a lot of things, but for that particular person, it's not enough. I need more iron than than 'normal'. Also, you mentioned problems with supplementation. Have you had any success with sublinguals?

I don't know but, I know for b12 the lower end of normal can be quite different depending on what country you live in and possibly the lab. When I was first told that my b12 was deficient it was 205 but the low end of the range was 200. So on paper I was not clinically deficiant but since I had symptoms and my b12 was so low it was treated for as a deficiency. However, I was told elsewhere 500 is the low end of the normal range. Some doctors do not worry about bloodwork results if the lab doesn't flag a result as abnormal. So you could be a few points above the normal range so your dr says it's "normal" but it might be too low for you personally.

On a side note, b12 deficiency can cause anemia.

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There really isn't anything I can offer for advice about being tired all the time as I haven't conquered that myself. I can offer hugs though because I know how frustrating it is. My doctor told me that I have to get exercise although right now it just wipes me out and I can't take the impact of even walking. This has led to me joining the local fitness center and taking water aerobics classes which I just started. I'll go either 2 or 3 times a week, whatever I can handle without over exerting myself. Like you I can end up bedridden for days from overdoing things.

As for what you can do with your time? Well, if you have any hobbies that can keep your hands busy that you can handle they can be a good option. I crochet, cross-stitch, embroider and just read sometimes. I can't do too much of any of these as even this can wear me out, but I do what I can. Other than that, I have my vice which is (yes a waste of time, sort of) video games. I play the ultimate geek game, which is World of Warcraft. It not only occupies my mind and time and keeps me from being completely crazy but it keeps me from being disconnected from the world. In the four years I've been nearly debilitated I've found that reaching out and making friends this way has helped to alleviate the feelings of being so very isolated. Now I don't necessarily recommend this game as it can be highly addictive but there are many similar options whether it be games or other types of online communities that will kill two birds with one stone. It can occupy your time and also help you keep social.

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just a quick thought, I know you mentioned your iron levels were low, but have they checked you for hemochromatosis? that would mean you are actually storing iron, but the symptoms include fatigue, among other various things that can seem like chronic fatigue. I was diagnosed to the surprise of everyone (including my gastro) almost 2 years ago, and still struggle with symptoms. joint pain, hair loss, gut issues, tired all the time....etc. it's a genetic disorder and it's actually quite common.

just a thought. good luck. it's no fun, I can relate :)

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Thanks for all of your thoughts. It's definitely not low B12 (mine is over 900) and it isn't hemochromatosis (have checked iron labs carefully) unless there is something about it I don't know. My saturation has generally been on the low side.

>>>As for what you can do with your time? Well, if you have any hobbies that can keep your hands busy that you can handle they can be a good option.>>>

I do have a couple of good hobbies which give me some good positive things to focus on as well as some social life. I guess my biggest trouble is knowing how hard to push and when vs. when to back off and relax. I know I'm making progress, there was a time I couldn't raise my arms to wash my hair and now I can go for 20 minute walks many days.... It is difficult for my friends to understand why I just can't exercise more to have more stamina like they can! Not to mention that I'm underweight and have to choose where to expend my energy!

Anyway...I'll keep looking for answers... Patience has never been my strong suit. ;)

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Good luck to you. I hope you find something.

Have you had any food allergy testing done? Do you find that you are sensitive to any foods other than gluten?

I've only been off of gluten for 3 months. After the withdrawal period, I finally started to feel rested and like I have some energy. Now, I'm back to feeling tired. But, I think I've found that I now have an intolerance to egg whites. I'm not allergic to them, but a definite intolerance (stomach cramps, bloating).

I'm wondering if that is the cause of my renewed tiredness. So, I was wondering if you notice a sensitivity to other foods, too. Pay attention to that. It might take a while to notice.

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For me, chronic fatigue is one of my glutening symptoms. I eat unprocessed foods almost exclusively, and I'm even careful about them. As time goes on I need to be more and more careful or symptoms come back. I keep a food/symptoms journal and try to only change one thing per week so that I can track the origin of my symptoms. If I am experiencing symptoms I will eliminate/challenge things in my diet until I figure out what is causing the problem. It can take months sometimes, but I do eventually figure it out. I hope that you feel better.

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Yeah, I've looked into other foods. I found that I do better with no grains. I'm on the GAPS diet, which among other things is grain-free and soy-free. I've tested against nightshades, fructose, dairy and a bunch of other things. I eat only whole, unprocessed foods, organic when possible. I can't afford to eat all organic meat - I'm on a high calorie diet - but chicken and broth is all organic.

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can you eat peanut butter and jelly? i had a sandwich on gluten-free bread yesterday and my (week-long) fatigue went away. even overdid it yesterday (renovating our house - ugh...)and woke up this morning without feeling like i had been hit by a truck. i know exactly what you mean about being so tired. i am 'tired' of telling my husband i am tired but he knows anyway because i am yawning all day. when i am pms'ing i am extra tired, too. if the pb&j works i will be soooo happy. i tried it for snack again today :) we shall see!

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I know you have had lots of blood work done, but one of the ones they forget to do is FOLATE levels.

My tanked B-12 and D were already supplemented and high, but I was still dragging so much and I was wiped out.

So, what was it?? I read about how Celiacs often have some type of anemia: iron deficency, B-12 or Folate.... OR a combination of them!

I asked for this test when I read about it's frequency in celiac and that was the answer!

Supplemented for a few months with prescription folic acid and I was

so much better. No more bone-deep fatigue.

Just a thought.

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I'll definitely have my folate checked next time I go in for blood work. Last time it was >20 and "normal" is listed as > 5.35 ...which doesn't really make much sense. What's with the >? The way I read that is mine was greater than 20, which is high (standard reference range I found online went to 17, so it's not absurdly high). I'm not taking that vitamin anymore anyway - may have been over-supplementing at the time. That was many months ago, though.

My doc did say she'd keep testing things if we can think of things to test, so ...anything else I may have missed?

Of course, I'm going to have to (attempt to) qualify for new insurance soon...so I may wait until then.

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From all you have told us, it sounds as if you thought of everything else. The Folate anemia possibility was all I could come up with.

I hope you figure out what it is, hon.

I know how frustrating it is to feel this way.

Keep us posted!

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    • My understanding is that some wheat has lower amounts of gluten.  If you have Celiac, that doesn’t matter.  But if you don’t have Celiac but have another issue - like a FODMAP problem- that might be OK.  
    • Thank you so much. This has been very helpful. I will pursue with PC. Appreciate your insights.  
    • What is the difference between American flour and wheat flour from Finland? When we lived in Scandinavia my wife could eat bread with wheat flour. We moved to Texas six years ago and my wife became severely intolerant to wheat. She can't have the smallest crumb without a reaction. She gets bumps and severe abdominal pain. Anyway, we decided to have some wheat flour shipped from Finland. My wife has baked bread and cakes with the flour from Finland now, and has not had a reaction as yet! Yes, she is still careful. She is afraid to overdo it and suffer, but so far she has been doing OK.  She has also met others that have been able to tolerate European flour, but not American. My wife has also tried other European flour, but still experienced problems, so there seems to be something different about the Finnish flour. It contains gluten, but I believe that the gluten content may be slightly lower, while the flour is top quality and makes awesome bread and cakes.  Also food grown in Finland are some of the most wholesome you can find anywhere.  I am interested in finding out if anyone else have a similar experience. My wife is continuing to bake with Finnish wheat flour and seem to be able tolerate it.  
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