• Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      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 Celiac.com's FREE weekly eNewsletter   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

Gluten Free 4 Months And Dealing With Fatigue
0

Rate this topic

13 posts in this topic

Recommended Posts

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...

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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?  

Share this post


Link to post
Share on other sites

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?

Share this post


Link to post
Share on other sites
Ads by Google:


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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites


Ads by Google:


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!

  • Upvote 1

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites


Ads by Google:


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.

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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! 

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      108,139
    • Total Posts
      939,874
  • Member Statistics

    • Total Members
      66,127
    • Most Online
      3,093

    Newest Member
    JosephK116
    Joined
  • Popular Now

  • Topics

  • Posts

    • I think she wants you to be strictly gluten free and heal.  Not give you things to patch up the damage you are causing by not getting your antibodies down and healing.   I am sure  she expected that you would take your diagnosis seriously and eat gluten-free.  4 months after your diagnosis, your antibodies would have gone down better.  But you weren't eating gluten free.  Eat gluten free. Take your supplements.  Read about the correct way to get your iron up - B12, vitamin C, don't take with calcium foods, etc  
    • Hello! I'm hoping to get some advice from y'all about iron IV infusions. First, some background: I was diagnosed with celiac disease at the beginning of June this year (2017).  I had labs done in March and my serum ferritin was 5 ng/mL. Hgb was 11.1, which isn't all that low, but is still flagged as below the normal range. I took 325 mg ferrous gluconate supplements daily for two months, and when my ferritin was rechecked, it was down to 4. The doctor ordered a celiac antibody panel and all of the levels were high. Confirmed with endoscopy at the end of May. A month later, I left for a 2-month study abroad program in France (aka the land of bread and pastries). After returning to the US at the beginning of August, I finally went gluten-free.  At the beginning of September, I returned to my University. Almost immediately, I realized I was really tired and was having a hard time making it through the day without a nap. I finally had a follow-up GI appointment around September 20th with the PA of the doctor who performed my endoscopy (not the same doctor from March). During the appointment, I asked her what we would do if my labs showed an iron-defiency. She told me that we would either do oral supplements or IV infusions, depending on whether or not she thought I'd absorb the supplements. When the lab results came in on the online patient portal, she made no comment on any of the iron-related results, just sent me a message that my antibody levels were still quite high, that I needed to keep up a strict gluten-free diet, and that we would recheck everything in six months. My ferritin was down to 3, Hgb was 10.3, iron saturation 6%, etc.  I was concerned about those results, so I called the PA's nurse and left a voicemail asking what the plan was for getting those levels up and got a portal message back from the PA saying that my hemoglobin was slightly low and will get better over time as I cut out all the gluten in my diet, but that I can start taking supplements if I want to speed up the process. I know that the Hgb still isn't that low, but it seems like the ferritin level is more serious. I went back for an appointment with the doctor who first found the iron-deficiency back in the spring and she seemed a lot more concerned. When I brought up IV iron therapy, she seemed to think it was a good idea. However, she's a primary care physician through my school's clinic, so she can't give me infusions. She called the PA with the intention of finding out whether or not she would change her mind about infusions, and had no luck. Interestingly, the PA's nurse informed her that they don't expect me to be able to absorb the supplements right away, and would consider IV infusions after I've been gluten-free for another six months.  I've done a bit of research on the IV infusions and it seems like I fit the criteria. Based on my antibody levels, I'm clearly not able to absorb iron any better than back in the spring, when the oral supplements did nothing for me. I understand that once my intestines heal more, I'll start being able to absorb iron better and should be able to boost my levels with oral supplements. However, I feel like I need a solution that will help me much sooner. I have a very demanding course load this semester and I'm constantly exhausted. I fall asleep doing homework at least twice a week. My grades are suffering, my mental health is suffering, and my relationships are being tested. I still don't have an explanation for why the PA doesn't think IV infusions are appropriate and I don't understand it. I really don't know what to do next because I'm afraid if I try to talk to the PA again, she'll get annoyed. I know that was super long, so for anyone still reading, thank you for bearing with me!! Now for the questions: 1. Do you think iron IV infusions in the near future would be a reasonable treatment for me? 2. Do you have any advice on how to make them happen? And if you have any other advice that's relevant to my situation, I'd love to hear it!   Thanks so much, Sofie
    • I can tell you that last week, I picked up and delivered 30 boxes of Costco pizza to a hungry marching band.  I lived!  Seriously, just wash your hands after handling.  Ennis is right.  Do not take a big sniff of the boxes in case there is any residual flour.  It took days for my van to air out and I did lay some old beach towels to protect my interior as normally, gluten is not allowed!  
    • I just found a nicer compilation of her work, much easier to understand. She also makes the connection between Sleep apnea, vit. D and the gut. Maybe you will enjoy it too:  https://www.vitamindwiki.com/Handout+on+Vitamin+D+(Hormone+D)+and+sleep+-+Gominak+2012 She mentions autoimmune diseases in general but not Celiacs. But I think it all connects and makes sense.  You are right, no matter how a post is, someone might read it. I did. 
    • i looooove nuts.com.  i've already ordered all my nuts, etc, for holiday baking from them.  if you order (i think it's 65 bucks) enough, you get free shipping.  the nuts are so pretty, not all busted up and stuff.  they send you a little sample with your order (this time it was goji berries) also, i got pepitas and sweet rice flour.  they have added alot of new products.  i highly recommend them
  • Upcoming Events