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I have been Gluten free since I was diagnosed with Celiac Disease by biopsy and blood work at the end of last September.  Withdrawing from Gluten was very difficult.  I had all kinds of symptoms - then after about 6 weeks I felt wonderful.  I really have been very disciplined about avoiding all gluten.  But, I find myself exhausted again - so much so that I don't even feel like preparing food.  I am living on those Ensure Clear drinks that are supposed to have protein and vitamins, plus I am taking vitamin D3 and B-complex, and Calcium and Magnesium.  Another thing that I have noticed is that my hands and feet both feel tickly, sometimes my lower legs tingle - but especially in my hands and forearms I feel this strange tickly/nervous/trembly feeling.  I don't know what it is.  But the crashing fatigue is what I find most worriesome.  I just turned 58.  What could this be?  I have got to get better, I have 2 daughters both expecting babies in July and September, a son graduating from college, and getting married, and so much more, I can't afford to sleep all of the time.  Please don't tell me I'm depressed - I'm not.  I basically love my life.  I am just exhausted. 

 

Thanks for letting me have a place to just vent. 

 

Gwynanne

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Have you had your thyroid tested? Sounds like you need to see your doctor and get evaluated for other issues? Maybe you got mono? I have a friend in her 40s that just got mono. Apparently it isn't just for young adults!

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I actually have been tested for any thyroid issues many times because my youngest sister has hypothyroidism, and so does my Maternal Aunt, but, nothing comes up in the blood work.  Although if I went by my early morning temperature - usually very subnormal - 96.4 or lower - I still wonder if it isn't my thyroid.  But if Doctors don't see it on paper, they deny there is a problem.

 

I think I'll make an appointment with my Primary Doctor and see if I can be tested for some possible nutritional deficiencies, and maybe see a neurologist as well. 

 

Thanks for responding.

 

Gwynanne

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I suggest adding more variety to your diet.  For example in the morning run water into a pot.  bring it to a boil.  Turn down to medium.  Add a couple of eggs.  Cook about 5 minutes removing them while they are still a little soft.  Perhaps you aren't tolerating the Ensure.  An easy way to cook is in the crock pot.  Brown some meat and toss it in with vegetables.  Add some water.  Cook for the day.  You can make it at your best time a day. 

 

Is there anyone who can help you cook.  A friend, a neighbor or relative.  It is hard to start when you feel rough. 

 

I have come out of fatigue after 30 years of it, so I have hope for you.

 

D

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Thank you 1desperateladysaved.  I would love to hear your story.  I have slept on and off today. My husband helps with cooking and I feel so guilty - because he works all day.  I wonder if I could be anemic, although anemia has never been an issue in my life before.  I'll make get some blood work ordered next week.  I can go on like this much longer.  The Ensure that I drink is the clear liquid fruit kind - I wouldn't be able to handle the milk kind. 

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Thank you 1desperateladysaved.  I would love to hear your story.  I have slept on and off today. My husband helps with cooking and I feel so guilty - because he works all day.  I wonder if I could be anemic, although anemia has never been an issue in my life before.  I'll make get some blood work ordered next week.  I can go on like this much longer.  The Ensure that I drink is the clear liquid fruit kind - I wouldn't be able to handle the milk kind. 

 

 

If you are this tired, you really need to tell your doctor.  There are many things it could be and you would want to get them taken care of.  This might not be Celiac related as you were feeling good.  I am sure that only eating a supplement isn't helping your energy either.  

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Maby another food intolerance? I am so sorry your in such pain and agony. I hope you find your answers soon! 

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I experienced the deep fatigue and tingling for years before going gluten-free. It's been a slow course to feeling better. It IS progress even though it's been up and down. The fatigue and tingling have improved a lot over time (been gluten-free since 11-2012). On Wednesday, I reintroduced dairy and the tingling is out of control. My doctor checked me for food intolerances last year and I have over 55 food intolerances. The only quick improvement I have experienced was once I eliminated all of the intolerant foods, my inflammation immediately went away (it comes back when I eat something I'm intolerant to). Also, I have vitamin D deficiency and anemia (very low ferritin). All of those things play their role. Be sure to check for vitamin deficiencies.

It's been kind of a crazy ride for me, especially the first year. There are a lot of things to sort out. I hear you on not wanting to yield to this thing. My doctor had to tell me to rest and aim for 10 hours of sleep a night. Also, EAT! Find four easy safe foods. A lack of nourishment causes my tingling as well. Throw chicken in the crockpot with gluten-free broth and have gluten-free tortillas on hand. Make more than one meal's worth and freeze. Have apples and almond butter, bananas, Amy's black bean chili, easy to grab and eat items. Ask someone to go to the store with you and buy several of these items to stock. It was also difficult (and still is at times) to feed myself sufficiently through all of this. I had to start with EASY, not ideal. Bought lots of canned food until I had a little more energy to put more effort into it. Small steps.

I am still learning. Talk to your doctor. Take care of yourself first. It's important.

Cali

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I was 58 when diagnosed so can totally relate!   I agree with some variety in your diet.  Ensure is fine but there are so many other ingredients that just aren't good for you.  I have an egg every morning and you need lots of fresh veggie and protien.

Also... I have that devastating exhaustion also and it turns out that I have chronic anemia and must take iron supps alsong with b12 shots.  So do get your vit levels checks as that may be what is helping with your tiredness.   (I was sleeping 12 hours a night along with a 2 or 3 hour nap.  Life is too short for so much sleep time!)

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I have been Gluten free since I was diagnosed with Celiac Disease by biopsy and blood work at the end of last September.  Withdrawing from Gluten was very difficult.  I had all kinds of symptoms - then after about 6 weeks I felt wonderful.  I really have been very disciplined about avoiding all gluten.  But, I find myself exhausted again - so much so that I don't even feel like preparing food.  I am living on those Ensure Clear drinks that are supposed to have protein and vitamins, plus I am taking vitamin D3 and B-complex, and Calcium and Magnesium.  Another thing that I have noticed is that my hands and feet both feel tickly, sometimes my lower legs tingle - but especially in my hands and forearms I feel this strange tickly/nervous/trembly feeling.  I don't know what it is.  But the crashing fatigue is what I find most worriesome.  I just turned 58.  What could this be?  I have got to get better, I have 2 daughters both expecting babies in July and September, a son graduating from college, and getting married, and so much more, I can't afford to sleep all of the time.  Please don't tell me I'm depressed - I'm not.  I basically love my life.  I am just exhausted. 

 

Thanks for letting me have a place to just vent. 

 

Gwynanne

 

Thank you 1desperateladysaved.  I would love to hear your story.  I have slept on and off today. My husband helps with cooking and I feel so guilty - because he works all day.  I wonder if I could be anemic, although anemia has never been an issue in my life before.  I'll make get some blood work ordered next week.  I can go on like this much longer.  The Ensure that I drink is the clear liquid fruit kind - I wouldn't be able to handle the milk kind. 

Hi Gwynanne, 

 

I completely relate and have had the same experience. For me, extreme fatigue and cognitive issues have been the most miserable and devastating. I was diagnosed 1 year ago.  Right about 6 months gluten free, I was where you are right now. I was too exhausted to make myself food so many times I just didn't eat. And while the obvious reaction is "oh, you're tired because you're not eating", I can assure you that for me, that was not the case. My fiance eventually realized I wasn't eating and started monitoring my food intake but no matter how much I ate, or didn't eat, or the quality of what I ate (endless elimination diets and zero processed foods, no grains or sugar, etc) nothing worked.  It wasn't until October when I saw a sleep specialist, that my ferritin was recognized as a major problem. It was only at 5 and my other values were starting to drop as well. Although I wasn't technically anemic, I was to weak to walk up stairs and I had horrible restless leg issues, so the sleep doc referred me to a hematologist who agreed to iron infusions (I couldn't tolerate iron pills). I really noticed a HUGE difference!!... for a short period of time anyway. While I'm not as bad as I was 6 months ago, I'm heading south again.  I suspect an undiagnosed B12 deficiency (that's another sorted story) so I'm heading back to the hematologist to find out.

 

Did you make an appointment to be tested for deficiencies? One big lesson learned was that you do not have to be anemic in order for low iron to take a major physical toll on your body. I hear it's the same for B12 deficiency too. The tingling you mention could be B12 or thyroid or a number of things but IF (I'm not a doctor, of course), IF it's some kind of neuropathy setting in, you really need to find out by way of testing. Neuropathy can become permanent if the cause isn't diagnosed and treated, and the sooner the better. I do agree that it could be diet related, perhaps controlled by eliminating the offending food. But don't assume that it is or that it will go away in time.

 

I understand your sense of urgency. I've been engaged for 3 years now, been sick for 4, and still waiting to plan my wedding. I'm 37 and running out of time to have children or it certainly feels that way (an intuition I suppose). The only thing I can tell you is to fight for it. When you're exhausted and miserable, sometimes anger is the only thing you can feel.  Use it to fight for your health and fight to be a part of all the blessings about to come your way. If one doctor won't listen or writes you off as "depressed", he/she is of no use to you so move on and find someone who will listen and help you. If you think of it, post back and let us know how you're doing. Best of luck to you!!

 

Celeste

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