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Gluten Free 4 Months And Dealing With Fatigue
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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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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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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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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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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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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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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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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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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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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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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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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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    • I just now saw the second reply and I see what you mean. Again, the issue is that I may have to go with the gluten until close to the end of the year.

      However, an idea did just come to mind, and that is, can my primary care doctor do such a test? I had normal blood work done, but they didn't really say anything about testing for celiacs. I can get an appointment with my primary care doctor much sooner than a GI.

      When I was talking to my PCP last, I asked her what I should expect as far as testing goes or what she may have been concerned about. Her reply was about a HIDA scan for the gallbladder but also any test needed in case of IBS or Celiacs. Just the way she threw that in there like an after thought and left me hanging kinda had me worried.
    • I am not a doctor that's for sure.  So, I can't even answer your questions.  If you know you have pre-diabetes, you probably are working with a doctor.  Can you email them and ask for a celiac blood panel?   You can work on the weight loss and diabetes -- that you can handle yourself now and take action.  I have diabetes and my glucose readings are fairly normal now without medication and I'm thin.  Being overweight does not cause diabetes.  It's either autoimmune (type 1) or you become insulin resistant (type 2).  You can cut out all sugar and  processed stuff ASAP to help take action and start walking 10,000 steps (helps with the insulin resistance).    But the prediabetes is not going to kill you in the next year.  Whatever's in your gut is more likely going to get you much sooner.  But heck, I'm not a doctor and I don't even know you!    
    • Hi Steph, Yes, celiac disease can cause a myriad of symptoms and damage to the body,  Have you completed all celiac disease testing?  Usually they do the blood antibodies test first and then do an endoscopy.   You shouldn't go gluten-free until all testing is completed. Gluten is in many processed foods.  But if you stick with whole foods it is not hard to avoid gluten.  Getting used to eating gluten-free may take some time, as we need to adjust our preferences in diet.  But there are many foods that are naturally gluten-free.  Gluten is the protein found in wheat, rye and barley.  Some celiac disease organizations recommend avoiding oats also for the first 18 months of the gluten-free diet. Celiac disease impairs the ability of the body to absorb nutrients (including vitamins).  That can make it hard for the body to maintain itself and heal/repair damage.  So celiac can easily impact any part of the body. Sardines, tuna, mackeral and salmon have good amounts of vitamin D in them.  There are supplements available also, but not all are good.  You can check them at the labdoor website.  Nature Made is a good one and not expensive.  Internal damage from celiac can cause liver issues.  Those will probably clear up after being on the gluten-free diet a while. Recovery from celiac can take  months, and can be a rocky road.  The more you stick with whole foods and avoid cross-contamination issues the sooner you will heal IMHO. You may find that dairy causes problems for your digestion at first.  But it make stop being a problem after you have healed up some. welcome to the forum!
    • Will this be dangerous considering how long I have to wait for any testing? I may not even get a blood test in November but here is hoping. I just worry having to wait so long will cause serious issues, not to mention delay of weight loss which I need for the pre-diabetes. Do ulcers have a chance to cause yellow stools though? I suppose a stool test will be needed for that for any signs of blood in stools but visually it does not seem so. The biggest issue is not knowing what else could be causing the yellow stools as this would not be a diabetic or ulcer thing. And without negative signs on the gallbladder or liver, it is narrowing down the list.

      At the very least this is making me assume I can wait on a final scan of gallbladder and attempt blood tests and endoscopy if they recommend it.
    • The first step is getting a celiac blood panel.   Any medical doctor can order one.  Live near Chicago?  They are do free screenings this month (check their website).  The cost is less than $400 for the complete panel.  If you get a positive on any one of them, then you should be referred to a GI for an endoscopy to obtain intestinal biopsies.   Here's more information from a reliable source and not just some lady on the internet: http://www.cureceliacdisease.org/screening/ Having had my gallbladder removed (probably ruined from undiagnosed celiac disease, but I don't know that for sure), I would recommend a HIDA scan.  I have no idea how expensive that one is.  It's a nuclear test that checks for functionality.  Basically, is your gallbladder squeezing bile into your small intestines when those fries or bacon come down the tube.  Mine happened to actually be rotting (infected).  ER suspected appendicitis, but it was a rotten gallbladder.  I never had any stones (that's what the CT or the ultrasound can find).  I am sorry that you are ill.  Keep eating gluten until all testing is complete.  This is important.  Go gluten free now?  Here's why you shouldn't..... http://theceliacmd.com/2013/04/six-reasons-to-test-for-celiac-disease-before-starting-a-gluten-free-diet/  
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