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Gluten Free 4 Months And Dealing With Fatigue


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#1 ItchyAbby

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Posted 01 October 2013 - 02:48 PM

Hi all -

Today marks 4 months for me being totally gluten free. I do not go out to eat at all. I cook all my own food from scratch instead and I am feeling much better. My DH has cleared significantly (thanks goodness) and some other symptoms have diminished as well. But for the last two weeks, I have been SO tired, especially in the afternoons. I have been chalking it up to the severe lack of sleep I had for months when the DH was making everything impossible. But I am wondering if it might be something more? Or maybe just part and parcel of the healing process? Any ideas would be appreciated. Just wondering what else I should be watching out for...


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Self Diagnosed with DH in June 2013

MD and ND confirmed shortly thereafter

Gluten free June 1, 2013

Low Iodine July 15, 2013 - (waiting for the rash to clear...)

Other symptoms: IBS-D gone, skin on face much clearer, anxiety gone, periods regulating and less painful, and oh! this one is new: I have not had a UTI since going gluten-free (used to get them several times a year)

Currently training to become a Nutritional Therapy Practitioner. I want to heal as many guts as I can!

 

Love Heals.


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#2 1desperateladysaved

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Posted 01 October 2013 - 05:39 PM

Have your nutrient levels been checked and checked again?  Maybe you are not taking supplements, or they aren't being absorbed well enough.  You may have other food intolerances, or maybe your body is just really working hard on recovery.  Have you had any higher highs, yet?  All of these things were going on with me at 4 months gluten free.  Also, I believe I dealt with cross contamination.

 

So, glad the DH has improved!  Perhaps that shows that you are managing to stay gluten free.

 

How long were you ailing or showing symptoms?  I was 30 years.  I am currently 18 months gluten free and feeling much better.  I needed to work on all of the above ideas  and more first, though.

 

D


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#3 ItchyAbby

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Posted 01 October 2013 - 06:14 PM

I had my nutrients checked and everything looked really good. My B12 was ever so slightly low. But maybe I should check again? I am taking supplements, including a chewable B12 (gluten free).

 

I have had some higher highs! (If I am understanding you correctly...) I feel pretty great sometimes, and good most days. The bad days are fewer and farther between. Anxiety has diminished greatly - for that I am so grateful. I have been very strict with my food intake. This was hard at first, as I decided that I could no longer go out to eat and that all processed food was off limits. It has now become "normal" that I cook everything from scratch and bring food with me everywhere. Luckily I like to cook. I have since eased up a bit and allowed myself to visit a gluten free bakery in town - the owner has Celiac and a host of other autoimmune diseases, so I feel confident that she knows how to feed us. Being gluten free is not as hard as low iodine, I think. My S.O. is gluten free, so our house is safe. My sister is also gluten free so I can eat there. And my parents are very supportive, so even though they are not gluten free, they have worked hard to make their kitchen safe for me.

 

As far as how long I was showing symptoms: I was diagnosed with IBS in 2007 - that would come and go over the years, mostly when I was stressed or after a heavy meal. It was never so bad that I thought that something else might be up. I was diagnosed with Generalized Anxiety Disorder sometime around late 2010. The first itchy dot that I now know was the beginning of DH showed up in January of 2010. The itchy dots would come and go from 2010 until the beginning of this year. Then in January of this year the DH exploded. From January to June it spread like wildfire all over my torso. I also started having full blown panic attacks in April of this year - days after day of them. Then I went gluten free June 1st and things have been slowly improving since then. I would say that it wasn't until September that I could definitively say I am getting better. I am so grateful.


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Self Diagnosed with DH in June 2013

MD and ND confirmed shortly thereafter

Gluten free June 1, 2013

Low Iodine July 15, 2013 - (waiting for the rash to clear...)

Other symptoms: IBS-D gone, skin on face much clearer, anxiety gone, periods regulating and less painful, and oh! this one is new: I have not had a UTI since going gluten-free (used to get them several times a year)

Currently training to become a Nutritional Therapy Practitioner. I want to heal as many guts as I can!

 

Love Heals.


#4 cyclinglady

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Posted 01 October 2013 - 06:36 PM

When I'm really tired in the afternoons and feel the overwhelming need for a nap, it usually means that my thyroid isn't functioning well.  Have you ever had it checked?  


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#5 ItchyAbby

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Posted 01 October 2013 - 07:38 PM

I had mine checked back in July - my TSH was normal. But that was right when I started the low iodine part of my diet. Maybe I should check it again? And is there something besides TSH that should be checked?


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Self Diagnosed with DH in June 2013

MD and ND confirmed shortly thereafter

Gluten free June 1, 2013

Low Iodine July 15, 2013 - (waiting for the rash to clear...)

Other symptoms: IBS-D gone, skin on face much clearer, anxiety gone, periods regulating and less painful, and oh! this one is new: I have not had a UTI since going gluten-free (used to get them several times a year)

Currently training to become a Nutritional Therapy Practitioner. I want to heal as many guts as I can!

 

Love Heals.


#6 w8in4dave

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Posted 01 October 2013 - 10:24 PM

I also suffer from lack of energy, I think mine is coming back slowly .. I have good days and bad days


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#7 GF Lover

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Posted 02 October 2013 - 03:49 AM

The healing process takes time.  Your body is using a lot of energy to do this.  I would not go nuts looking for additional reasons for feeling tired.  Make sure you get good sleep and exercise.  When you have your normal follow up with your Doctor, he can check your thyroid and vitamin levels at that time. 

 

Good luck to you.

 

Colleen


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#8 IrishHeart

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Posted 02 October 2013 - 04:23 AM

I have a suggestion: Have the doctor check your FOLATE level (and your Vitamin D too) when he does your blood work.

 

They never check this vitamin level (B9) and it can cause serious fatigue

and it is a quite common form of anemia in celiac. (along with B-12 and iron deficiency)

 

It kept me flagging the first few months until I read about all the things that go haywire with celiac and my doctor

tested me and there it was. Tanked folate. I looked like a genius and he looked like the same deer in the headlights

he always did. :lol: but whenever anyone says they still feel exhausted, I suggest folate.

A few months on prescription strength folic acid, and I was all set.

 

The TSH will not fluctuate that much since July, but make sure he checks for thyroid antibodies as well as free T4 and T3. 

Hang in there. You're doing a great job!


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#9 ItchyAbby

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Posted 02 October 2013 - 07:03 AM

I also suffer from lack of energy, I think mine is coming back slowly .. I have good days and bad days

 

I think you and I are about on the same timeline! Most mornings I feel ready to get up and go - then by 2pm, major nap attack. :lol:

The healing process takes time.  Your body is using a lot of energy to do this.  I would not go nuts looking for additional reasons for feeling tired.  Make sure you get good sleep and exercise.  When you have your normal follow up with your Doctor, he can check your thyroid and vitamin levels at that time. 

 

Good luck to you.

 

Colleen

Thank you. It makes sense that I would need extra sleep through the healing process. I think I am just so afraid of missing something (again!) that I am hyper sensitive to any little feeling. Reassurance from the community helps a lot. :)

 

I have a suggestion: Have the doctor check your FOLATE level (and your Vitamin D too) when he does your blood work.

 

They never check this vitamin level (B9) and it can cause serious fatigue

and it is a quite common form of anemia in celiac. (along with B-12 and iron deficiency)

 

It kept me flagging the first few months until I read about all the things that go haywire with celiac and my doctor

tested me and there it was. Tanked folate. I looked like a genius and he looked like the same deer in the headlights

he always did. :lol: but whenever anyone says they still feel exhausted, I suggest folate.

A few months on prescription strength folic acid, and I was all set.

 

The TSH will not fluctuate that much since July, but make sure he checks for thyroid antibodies as well as free T4 and T3. 

Hang in there. You're doing a great job!

Oh! I am taking that, I think - my B-12 chewable also has 800 mcg folic acid. (I am assuming folic acid is the same as folate?) My iron was checked in July and it was actually high, and my vitamin D levels were checked in April and they were good too. Ok, I think I am reassured - I will just stay the course until my next checkup.

 

And thanks for telling me I'm doing a good job! I feel like the kid who just got a gold star on her homework!. Seriously, I have been working so hard at this and I am so determined to do whatever it takes - it feels good to have that affirmation. :D


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Self Diagnosed with DH in June 2013

MD and ND confirmed shortly thereafter

Gluten free June 1, 2013

Low Iodine July 15, 2013 - (waiting for the rash to clear...)

Other symptoms: IBS-D gone, skin on face much clearer, anxiety gone, periods regulating and less painful, and oh! this one is new: I have not had a UTI since going gluten-free (used to get them several times a year)

Currently training to become a Nutritional Therapy Practitioner. I want to heal as many guts as I can!

 

Love Heals.


#10 IrishHeart

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Posted 02 October 2013 - 11:02 AM

Well, I liked hearing encouraging words too when I was still in the beginning stages. Many people on here

told me many times "just stay the course--it gets better" "be patient" and I would think "BUT when???!!" lol

 

They were right. Healing happens.

 

Ok, just understand that 800 mcgs of folic acid will not rectify a serious folate deficiency, though--if that is what's causing the fatigue.

 

Next time you have a check-up, you can just ask for the folate test to rule it out.


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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#11 nvsmom

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Posted 03 October 2013 - 08:13 PM

That low iodine could be affecting your thyroid function. You need iodine to convert T4 to usable T3 (as I understand it). Did they check you free T3 levels when they checked your TSH? FT3 is the active thyroid hormone and if it is low, or even in the lower half of the normal range, it will affect your energy levels.

 

Hang it there. Sometimes it just takes more time.


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#12 w8in4dave

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Posted 03 October 2013 - 09:10 PM

I went to the Dr. Today :) He said You have Celiac you have to be patient!  :) Altho he did take a bunch of blood!! 


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#13 BelleVie

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Posted 06 October 2013 - 03:52 AM

Hi all -

Today marks 4 months for me being totally gluten free. I do not go out to eat at all. I cook all my own food from scratch instead and I am feeling much better. My DH has cleared significantly (thanks goodness) and some other symptoms have diminished as well. But for the last two weeks, I have been SO tired, especially in the afternoons. I have been chalking it up to the severe lack of sleep I had for months when the DH was making everything impossible. But I am wondering if it might be something more? Or maybe just part and parcel of the healing process? Any ideas would be appreciated. Just wondering what else I should be watching out for...

 

Hi Abby, I had the same problem. Someone recommended that I check the protein content of my meals, which were previously veggie, low-protein based, and that has helped. I try to keep away from grains and legumes in the afternoons too. It seems that beans and rice make me feel really sleepy. Someone else also recommended taking a B12 supplement, which has made a really noticeable difference in my energy levels! I hope you get to feeling better soon! 


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