The Fatigue...!

[lushgreen]

Hello All,

I'm not gluten-free yet - still waiting on test results, but in the meantime, I was wondering if there were any ways you found to cope with the fatigue? It is just so debilitating for me and has taken such a toll on my work performance. I am so worried about what the consequences are going to be for my career. I feel chronically exhausted, especially after I eat and find it hard to stay awake through the day. I'm filled with lethargy and apathy. In addition, I've got ADD and major brain fog.

I know a lot of you are dealing with these things, even after going gluten-free. Have you found any ways to deal with this? Caffeine isn't so good for me - I'm very sensitive to it. I get jittery, have to pee a lot and it keeps me up at night.

Help!

[mytummyhurts]

Do you know if you are vitamin B12 deficient? A lot of times they will run tests for this and other vitamins that celiacs are not absorbing while their intestines are damaged. When you are low in B12 this makes you really tired among other things. However, taking vitamins in a pill form will not help since your intestines cannot absorb them. Some people get shots to help with this (thats what I do) and other people take a daily sublingual tablet. You put a small tablet under your tongue, it dissolves and absorbs directly into the blood stream. I would talk to your doctor, hopefully you have one that knows about celiac disease.

[Guest kmmolina]

I as well as many have had to deal with the tiredness. Once I started going gluten-free some of the has gone away. As I move to being totally gluten-free I know find myself having spurts of energy. I don't know if this is something you feel you can do, but I sat down and talked with my boss. She had never heard of Celiac, as I am finding most people havn't. I explained to her what it was, how I had been feeling, and about the tests. I went armed with some things I had printed but it ended up I didn't need it. I just wanted her to know that I wasn't become a comple flake. I am lucky that I have a boss who is understanding and supportive. I hope you are also in the same situation.

[mouse]

I was giving myself the b-12 shots and the results would not last long. So, my Dr. just switched me to a sub-lingual liquid. I take that every morning. He stressed that it had to be the liquid as it absorbs directly into the blood stream. I am still extremely exhausted. I have been trying to put on some needed weight and so I also drink two or three High Protein Ensure drinks a day. Has any of this helped? Not so far, but I have hopes. I am looking forward to other suggestions in this forum. As the exhaustion really sucks. Have been totally gluten-free free for over a year and a half.

[chana]

Hello,

Besides testing your Vitamin B-12 level, test Vitamin D as well, it's also a regular blood test. I used to fall asleep at work without even noticing I fell asleep, that's how tired I was, and it turned out to be a very serious Vitamin D deficiency!!

Hope you feel better soon, and good luck.

Chana

[tarnalberry]

It seems counterintuitive, and I don't know if it would make a difference in your specific situation, but I find that I *need* daily exercise (at least moderate intensity - walking isn't really enough) to keep my energy levels up. Of course, when you're starting out tired, it's a nasty chicken/egg problem, but that's what willpower is for. ;-)

[lushgreen]

Thanks for all the replies and the suggestions.

kmmolina I appreciate your thought about speaking to my boss, but in my case, I can't quite do it, for one, because I don't know yet if I have celiac (or anything at all but chronic fatigue syndrome and IBS - those wastepaper basked diagnoses) and secondly because I'm responsible to too many people as a graduate student. I'm having real trouble meeting multiple deadlines for various projects and the worst part is that the reduced efficiency and productivity have been going on for months now, making me feel so guilty and even more depressed .

The ideas about vitamin B12 and D are particularly helpful. I am waiting for a bunch of tests that my doctor ordered but I don't know if B12 is amongst them. I wonder if they can be added on after the blood as already been collected?? I had bought some B12 tablets awhile back because I had heard that they help with ADD but had recently, instinctively, stopped taking them when I started suspecting malabsorption and figured that they would do me no good. I am glad to hear however that there are other modes of supplementing them and will speak to my doctor about them. Mytummyhurts, do th shots help? Armetta, hope you get some respite soon with all the supplementing you are doing. I so want to hear (for selfish reasons also) that going gluten-free clears up the exhaustion.

Chana, how do you manage the vitamin D deficiency? Is it helping with the fatigue? That is something that I think my doctor did order for me - am waiting to find out.

tarnalberry, I hear ya about the exercise - I live in NYC so I walk a lot, everday but I know I should do something more and have been wanting to - but yes, the willpower and trying to muster up that initial energy to get started...

[mouse]

lushgreen,

Please do not go by my exhaustion as to your recovery (if you have Celiac). I am 63 years old and by the time I was FINALLY diagonosed, I was probably two weeks away from any recovery at all (according to my doctor, when the light bulb when off in his head). I have been gluten-free for 1 1/2 years and maybe am at a 50% recovery. My doctor and I have discussed that I will not fully recover as there was just too much permanent damage. At the end I could not have worked even two hours, let alone a day. Went from a size 16 to an 8 and took naps that lasted 5 hours. Was severely dehydrated and could not even keep Petialite (sp) (for babies) in my system. While my doctor was trying to think of a nice way to tell my husband and I that I needed a shrink, the lightbulb went off. I was his first Celiac Sprue patient, but not his last. He has now diagnosed over 50, so I suppose my getting so sick has helped others. No, I am not angry and still see the same doctor, who tries to keep up on all my testing, of the whole body. So, if you are still able to work, the chances are that if you have Celiac Sprue and go gluten-free that you will have a full recovery. It really is not a bad diet and with research you can eat wonderful tasty foods. I fixed Thanksgiving dinner last year as we were invited to a friend's home and I did not want to get sick. She cooked the vegetables, the way I asked, but I prepared the turkey, stuffing, rolls and cake. No one could believe that everything was gluten-free and they took second and third helpings. Everything will be fine and you have to think positive. Armetta

[happygirl]

I hope that your test results provide you with some answers. I know that everyone's experiences are different, but once I went on a strict gluten free diet, my fatigue problem has diminished greatly. Took a couple months to heal, but now I am back to "normal" unless I get gluten in my system. ALL of my many, many symptoms disappeared once I cut gluten out.

[ianm]

I suffered from extreme fatigue and brain fog that was just crippling. The only thing that worked was to go gluten free. I now eat a healthy diet and exercise a lot. Without proper food and exercise I start to feel fatigue again. I am at a point where it is hard for "normal" people to keep up with me.

[mytummyhurts]

Lushgreen:

I would say that the shots help, but since I went gluten free and started getting the shots at the same time I can't really say if it was the shots or the diet change.

[jenvan]

Lots of good ideas here... another one is to simplify. Depending on your personality, this might be a help for you. It is for me--one I hate to do, as I like to try and do everything--keep a perfect house, cook dinner, keep up laundry, pursue my friends, exercise, yadda yadda... I have had to simplify and tell myself "no" many times--on commitments with friends, on exercise at times, on cooking dinner, cleaning.... I have to make myself do less, which is hard, but is a huge help. One thing at a time...

[jenvan]

PS--have you had your iron levels checked out?

[mouse]

jenven is right. You have to simplify. I USED to have to have a totally perfect house. I now most times don't even make the bed. That energy can be used elsewhere. On the days I find I don't have the energy to cook, I call my husband to bring home something for himself and occasionally I ask also for me. But, usually by that time I am not even hungry. When we get invites to a summer party, my husband says up front that it will depend on how I am feeling at the time the pary starts. Many times I have been dressed and just getting dressed wore me out. And so we don't go. People seem to understand and if they don't my husband says the H___ with them. My girlfriends' always understand as I have broken lunch engagements at the last minute. Many times they just come to my house to visit if I am in a bad energy time. In MY case, I consider my lack of energy, better then the alternative, which could have happened to me. I don't usually dwell on the energy loss, do what I can to regain some, and enjoy each day as much as I can. Live for today, Plan the future and Don't live in the past.

[jenvan]

good thoughts armetta...

[printmaker81]

Lushgreen,

I can definitely relate to your problems with fatigue. I had been working two jobs and on top of that exhibiting work. I can't tell you how hard it was to get into the studio or how many times I fell asleep drooling all over my drawings. I couldn't meet gallery deadlines, and even when I did, I wasn't happy with my work...leading to depression and poor self-image when I had previously prided myself on how hard-working I could be.

I've been taking b vitamin shots like mytummyhurts. I think they have helped a lot, if I forget to take them, I can tell. If exercise seems like it would be impossible, I would suggest yoga. I would do a little bit 10 minutes or so a few times a day. It helped with the joint/muscle aches and fatigue. The good news is, it will go away, but it may be the last of your symptoms to completely disappear. Even with all the progress I've made, I still have days when I am extra tired. I've found the energy to get back to work on my art, which makes my mood improve which is an energy boost in itself. Good luck and hang in there.

[Jnkmnky]

If you can find the strength, try lifting some light weights. Purchase small wrist weights and ankle weights that way you don't have to focus on holding onto them. If you add these to a few hours of your daily activities, you will get some exercise for your muscles without even trying all that much. Exercise and weightlifting can be a great benefit, but it doesn't have to be an hour at the gym to accomplish.

[chana]

lushgreen

Hi! I started taking Vitamin D pills - a very high dosage for several months and slowly started lowering the dose. It's very important to monitor the levels of the Vitamin D since too much is toxic!! Ever since I've been taking the Vitamin I feel much better, I rarely fall asleep in the middle of doing things, my memory is much better - it got to a point that I couldn't remember what I said a second ago...

It takes time to feel 100%, but there is hope.

Hope you feel better sooner than later.

chana

Chana, how do you manage the vitamin D deficiency? Is it helping with the fatigue?  That is something that I think my doctor did order for me - am waiting to find out.

[Guest Eloisa]

Hello All,

I'm not gluten-free yet - still waiting on test results, but in the meantime, I was wondering if there were any ways you found to cope with the fatigue?  It is just so debilitating for me and has taken such a toll on my work performance.  I am so worried about what the consequences are going to be for my career.  I feel chronically exhausted, especially after I eat and find it hard to stay awake through the day.  I'm filled with lethargy and apathy.  In addition, I've got ADD and major brain fog.

<{POST_SNAPBACK}>

I can totally relate to these symptoms. I went gluten-free and no change until I started taking a supplemental shake 2-3 times per day. I has all the vitamins and nutrients you need. The brain fog and alot of the other symptoms went away when I started taking these shakes.

[scotia]

Hi Guys/Gals...I went undiagnosed (as mnay celiac disease'ers do) went through the fatigue thing.

My buddies first noticed something was wrong, when I couldn't keep up on bike rides.

I used to be streets ahead (literally) of my buddies and they couldn't catch me, then one day while pedalling back from a 60 mile ride, I was lagging way behind...felt like I was going to flake out, and ended up getting off and resting for about half an hour, to regain some strength.

My best friend came back and said..."Man, there's something worng with you...get checked out..."

A week later I went in and told my doctor, there's something wrong with my body...(believe me, no one knows how you feel...or how your body is out of synch, more thant you yourself...) so he sent me for test, biopsy and lo and behold...I was told to go gluten-free, as I had been 'blessed' (my words) with having Celiac non tropical Sprue...Ooh! Sounds exciting..when's my flight leave... and pass the sunscreen...are there palm trees!!!

Anyway, at one point when they checked my iron level they got a shock.

Apparently, my hemogloben (I'm not into the technical details) was supposed to be somewhere between 20 and 25, which apparently, is normal.

Mine was 5 !!!...I mean...come on...not even double figures...!!! You little red or white corpusles are just not trying hard enough!!!

The doctors were astounded ( They both looked at each other, then me...and said..."I'm astounded!!!" hehe.

It was so low...They put me on a course of iron pills...eh...(Thanks Doc!!!).

All that did was constipate me and turn my poop black...(sorry if like me, you're very visual) ...again thanks Doc!!

After that I went in for Intravenous iron...6 hours with the chemotherapy patients, now, if you think you've got problems, and need a 'wake up call'...go sit there amongst some real heroes, who are facing a real battle.

Anyway, that helped me out...my iron levels went to normal and (Thank God) I've not needed to go in for anymore IV iron...that was about 8 years ago.

It may be just another option, for some who may be having a hard time absorbing iron pills...which was the case for me.

Anyway, another long drawn out post (sorry guys) but hope this helps.

I was always involved in sports and very athletic, so my training 'ethic' was such that, I 'thought'...

"I'm tired...I need to get some more exercise...get the blood coursing through my veains and oxygen into my blood."

Wrongo... Young Jedi!!!

What I was doing was, depleting what little reserves of energy I had...so in effect, I was running myself into the ground, and my immune system was open to any cold, flu, or whatever that would come along, and lay me out for a few weeks.

Anyway, it does get better,I'm gluten-free, and loving it...had burgers last night...Kinnikinnick sandwich bread (AWESOME) and made my own burgers...gluten-free breadcrumbs as filler...Yum Yum.

People have NO IDEA how that can lift your spirits, when you just want a deluxe cheeseburger, which of course the gen pop. take for granted...

God Bless all of you who are going through the first stages of celiac disease, and feeling 'jaded'...Don't worry, it will pass, and you'll gain weight...and get back on track soon.

Surround yourself with good, true, positive, friends, stay positive yourself ,and Good Luck with your 'journey' down the celiac disease pathway.

Scotia

Anyone who needs to vent ask questions can e mail me...if I'm able to help out, I will.

jaggynettle@hotmail.com

[jenvan]

Scotia-

I had a similar experience with the iron. The pills did not raise or even maintain my low low counts. So, I had an infusion as well. That was several months ago, and I am now waiting for my follow-up results to see if I've maintained normal levels. Unfortunately I didn't notice much difference in my energy levels--what I did notice is that about a week later I lost my obsessive desire to chew ice. Praise God--my poor teeth !

And man, those iron pills sure will back you up !!

[Magdeliscious]

I totally understand your concerns about brain fog and fatigue. those were and still are my two MAJOR SYMPTOMS!

Ive been gluten-free for about a year now and my symtoms have improved by 50-60%...I've asked EVERYONE about brain fog, and I get so many different responses. some say B-12, and others say i could have a hidden food allergy, it could be mycotoxins from candida yeast, etc etc. Basically, you have to figure out what your particular situation...SO MUCH EASIER SAID THAN DONE!

I really feel your pain though.....

Any more advice for Brain fog???

[lushgreen]

You guys are awesome!! I am grateful...and a little overwhelmed. Thanks so much for all the great tips.

The last couple of days have been marginally better - the gloomy, gray weather has lifted and we've had some sunshine here in NYC. (Does anyone else find that their fatigue/brain fog reacts to weather like this?)

Armetta,

It so irks me to read stories like yours - waiting for decades for doctors' knowledge to catch up with your so obvious symptoms. I hope that you find that most if not all the damage gets reversed.

And you and jenven are right about simplifying - it's what I need to do to my house -it's a bit of a mess and I think maybe I need to learn to live with its disorderliness. I feel otherwise that I've simplified as much as possible - dropped out of many social responsibilities, cut work down to a minimum...Thanks for the encouraging words.

Jenven, I found out today that my doctor has asked for anemia tests so now I'm waiting to see what the culprit is - vitamin? iron? And I have the same worry about iron pills from past experience - the C issue.

Printmaker81 - it's exactly as you've described. It's the thought of what I once was - so diligent to the point of being a workaholic and now no get-up-and-go at all - not anywhere near my previous capacity. And all this serving to further depress me. The words of comisseration go a long way - keep them coming. And if B12 is what is missing - thanks to you all, I will know what to ask for and what to do next time I see my doctor.

Chana, I had no idea this could be vitamin D related so thanks for the tip. Now I'm starting to wonder if it's behind my winter blues and what makes me so reactive to overcast weather - the inablity to convert sunlight to vit. D??

Scotia, right now my fatigue is the worst as soon as I eat something - it's almost instanteous. And then I start breathing hard and sighing in exhaustion. But I've also surprised myself by getting completely winded going up one flight of stairs - but strangely, I can walk for blocks without feeling out of breath at all - go figure.

Eloisa - are you referring to the Reliv shakes I saw you talking about in another thread? How does one purchase them? Can you tell me more or point me to a source?

Magdeliscious - this is the part that worries me - having to play sleuth on your own (and with this great board), trying to get to the bottom of intolerance, sensitivities, deficiencies, allergies - it seems neverending.

Thanks y'all - take care of yourselves and have a great gluten-free night!

[lushgreen]

LauraJ - So you know exactly what I'm talking about - being in grad school. I got papers to write, stuff to read, meetings to attend - and no energy to do any of them! I am really struggling with letting some things slide for the time being so that I can take care of myself and clearing some head space so that I can read about celiac disease and know what my next step needs to be.

Ianm - you give great hope to me. I've read your other posts too and it seems like going gluten-free was such a great turn around for you, especially with the brain fog issue.

Jnkmnky - getting to the gym or yoga class IS so hard right now when getting myself out of the house takes so much. The weights are not a bad idea...

Thanks for all the support you guys!

[jenvan]

lushgreen-

ps, if your iron is the culprit and you have to have the iron infusion done, it is not a hard procedure at all. just make sure they do a small test before on you with the iron to make sure you're not allergic. there are several different kinds they can give intravenously. my results came back and my iron is still in the normal range...so it definitely works.