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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Gluten Free 4 Months And Dealing With Fatigue
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ItchyAbby    33

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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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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ItchyAbby    33

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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cyclinglady    723

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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ItchyAbby    33

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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w8in4dave    75

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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GF Lover    201

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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IrishHeart    1,634

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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ItchyAbby    33

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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IrishHeart    1,634

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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nvsmom    332

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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w8in4dave    75

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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BelleVie    18

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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