Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • 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 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Horrible Fatigue And Other Problems
0

19 posts in this topic

I will be gluten free for 4 months tomorrow. I thought I had things figured out regarding diet, etc, but lately have been getting extremely fatigued starting in the early afternoon. I drink a lot of coffee, but struggle to stay awake until 9:00 when I fall into bed and sleep for 8 hours. Mornings are relatively OK and I do work out then, but sometimes the fatigue starts early and the work out gets cut short or I blow it off. I've also been getting cold lately and I never used to get cold.

My diet is good, I am not gaining weight and don't see anything else going on aside from extreme fatigue and things associated with that like lack of motivation to do anything and having a poor ability to concentrate. Oh, my resting pulse is way down (60-74) and blood pressure has dropped quite a bit over the last 90 days.

Any ideas on what I should look for or have checked? Thanks in advance.

0

Share this post


Link to post
Share on other sites


Ads by Google:

Sounds like a possible thyroid problem to me--fatigue and feeling cold or hot are the most common symptoms. This is something that many celiacs end up suffering from. I developed it myself after being gluten free for three years.

It's easy to treat....and it just takes a blood test.

0

Share this post


Link to post
Share on other sites

Well, I know others here will have advice for getting things checked, like thyroid or vitamin deficiencies. I did have to give up coffee (mostly) to feel better, and I feel best (like athlete form) when I am grain free, dairy free, soy free, drinking very little coffee and alcohol and taking B complex, iron supplement and 5000 iu of vitamin D/day. Plus...2 or 3 green drinks a day. It's a big commitment, but I if I'm off my formula, I just get run down really quickly.

Have you thought of other food intolerances, gluten sneaking in somewhere, or vitamins? I'd probably lose the coffee too. Good luck...others will reply soon with better advice, I'm sure.

0

Share this post


Link to post
Share on other sites

I know it may sound hard but you might try gioving up the coffee. I gave up all caffeine!

0

Share this post


Link to post
Share on other sites

I've tried cutting coffee - no help. I take vegan vitamins after figuring out a soy intolerance and finding soy in other vitamins. Looked for other food intolerances via an elimination diet and not finding anything. My diet has been very basic to try to keep possible offending foods out. Guess I may need to have thyroid checked.

0

Share this post


Link to post
Share on other sites




Fatigue is my number one symptom. And when I say fatique, I mean can't focus, can't stay awake, absolutely drained of every ounce of energy in my body. But I do believe it only happens when I've been glutened. If I am fatiqued for a day or so, I figure somehow a crumb got into my food. But if I am glutened badly, my exhaustion lasts for months.

And keep enjoying the coffee. There is so much we celiacs need to go without, let's not give up things that aren't bad for us and that we truly enjoy.

0

Share this post


Link to post
Share on other sites

Not a bad idea. I actually had a growth on my thyroid which was found during a scan.....I was having a very odd cough that I could not relate to anything, terrible time regulating body heat and would have to climb into bed under lots of blankets with socks on with flannels for hours to get warm. I would choke easily, swollowing was hard for soups, of all things. But what happens is the growth presses on the thraot and causes issues like mentioned. I was fatigued and maybe that had more to do with the thyroid than I realized. I was relating it to the vitamins I have been taking and the progress I have been making with my gluten-free diet but that's hard to say as both came about at the same time. I have been on a med to shrink the growth for 5 months now and have noticed all my symptoms are gone so I'm kind of thinking the growth is at least smaller, if not gone all together.

0

Share this post


Link to post
Share on other sites

If you go in for the thyroid check (by the way, you can just call your doctor and ask him to send a request to the lab--no need for a doctor's visit), you might also request that your B12 and iron levels me checked, too. Even when following a strict gluten-free diet, these two nutrients can sometimes be lacking due to malabsorption problems that haven't completely resolved themselves. Low levels of B12 and iron can also make you feel extremely fatigued.

0

Share this post


Link to post
Share on other sites

A family friend who is a nurse suggested it may be as simple as low blood sugar. She suggested this as opposed to thyroid as I am OK in the morning and decline in the afternoon. My diet has been animal protein and complex carbs with various vitamins and other supplements. Perhaps it is as simple of not getting enough carbs so I started taking honey several times during the afternoon and have felt better today. Coffee has been minimized also because I haven't felt the need. Wishful thinking or placebo? Time will tell. I'll start keeping fruit juice on hand and will try to maintain a steady level of blood sugar and see if that works.

1

Share this post


Link to post
Share on other sites

Your family friend may be right--low blood sugar can make you feel shaky and cold, too. When I first found out that I had celiac, I would suffer from low blood sugar while working out....and I started eating a banana right before I exercised, and that helped. I no longer have to do that, though.

0

Share this post


Link to post
Share on other sites

Still wouldn't hurt to get the thyroid checked as well as your vitamin D, iron and ferritin. Along with the low blood surgar all of those I mentioned can cause fatigue.

0

Share this post


Link to post
Share on other sites

For me, horrible fatigue is a glutening symptom. I am a super sensitive celiac. You could also consider that possibility. To see if that is the cause, you go on a diet of produce and meat for a few days to a couple of weeks and see if you notice a difference.

0

Share this post


Link to post
Share on other sites

Feeding a sugar imbalance with sugar isn't fixing your problem, it's just masking it temporarily. I would suggest rather stick to the diet you had, but eat smaller meals, more often. Like 5 or 6 times per day. Never skip a meal, and never go more than 6 waking hours without eating. Balance each meal with healthy fats, a moderate portion of protein, and controlled carbohydrates and this should help keep your glucose levels in check.

Whether hypoglycemic, or diabetic, keeping your blood glucose levels on an even keel, rather than spikes and crashes, is the ideal. And the best way to do that is to eat on a regular schedule, several times a day. And not with sugar.

0

Share this post


Link to post
Share on other sites

Getting your thyroid checked is a real good idea. I read somewhere that thyroid function normally decreases as people age, so declining thyroid function is the norm as we get older, not the exception. Hypo-thyroid symptoms are generally more even through the day though. That doesn't mean you aren't slightly below normal and having some symptoms from it.

The things that really knocked me for a loop blood sugar wise and blood pressure wise were soy and coffee. Stopping both of them made a huge positive impact on me. Thyroid supplements made an additional improvement. You could be having more than one issue is what I am saying, and it might take a change of more than one element to clear all of the problems.

I used to randomly pass out while sitting at the computer from low blood pressure. I had to keep drinking coffee or some form of caffeine to keep vertical, every 45 minutes to an hour. Stopping soy and coffee and starting thyroid supplements "fixed" me.

Another thing about thyroids is that most people develop thyroid nodules as they age. Over 90% of them are benign non-problematic nodules. so having a nodule doesn't mean you have cancer. Docs can do a procedure called a fine needle aspiration (biopsy) or FNA to take a tissue sample for evaluation. They just stick a thin needle in the thyroid and grab a tiny bit of tissue, no anasthetic needed. It just felt like a little pressure for mine. They also "palpate" the thyroid. Meaning they feel it with their fingers to detect bumps. Generally they stand behind you and feel the thyroid (front and sides of your throat about Adam's Apple level).

I had trouble swallowing food also, but not because of a bump, but because of low thyroid function. I do have a bump or two on my thyroid but for me food got stuck lower down. When I got on thyroid supplements that stopped happening. So I think it was muscle function that was impaired due to low thyroid.

I am in my 50's now.

0

Share this post


Link to post
Share on other sites

I've tried cutting coffee - no help. I take vegan vitamins after figuring out a soy intolerance and finding soy in other vitamins. Looked for other food intolerances via an elimination diet and not finding anything. My diet has been very basic to try to keep possible offending foods out. Guess I may need to have thyroid checked.

Def get thyroid checked. Are you taking any digestive enzymes?

And do you vitamins have iron? Anemia can be a big factor in fatigue/weakness.

0

Share this post


Link to post
Share on other sites

After loads of research and realizing that the fatigue was an all day thing, not just in the afternoon, I decided to look at my thyroid. I had been eating broccoli or spinach every day and found out that both inhibit absorption of iodine. So I started taking kelp, which has iodine in it, and within 48 hours had a lot more physical and mental energy. I realize that iodine, like so many things, can be a problem if you get too much or too little, so I am being careful with the dosage (taking just half of the powder in a capsule) and am cutting back on the offending veggies.

0

Share this post


Link to post
Share on other sites

Smart man...and thanks for the info about broccoli and spinach.

0

Share this post


Link to post
Share on other sites

After loads of research and realizing that the fatigue was an all day thing, not just in the afternoon, I decided to look at my thyroid. I had been eating broccoli or spinach every day and found out that both inhibit absorption of iodine. So I started taking kelp, which has iodine in it, and within 48 hours had a lot more physical and mental energy. I realize that iodine, like so many things, can be a problem if you get too much or too little, so I am being careful with the dosage (taking just half of the powder in a capsule) and am cutting back on the offending veggies.

Great that you found the culprit! Let me get some clarity on this, if I could? Is this in connection to the thyroid and what helped the thyroid to function properly? I am under the assumption that you do not take meds for the thyroid and have not been dx with thyroid issues. The reason I ask is I am on meds to shrink a growth on the thyroid and I actually had a terrible reaction to kelp. So what would you say this indicates?

0

Share this post


Link to post
Share on other sites

Hi Austin Guy,

I am glad you are feeling better. Hypo-thyroid symptoms can be no fun in many ways. I had a similar experience with iodine. I stopped eating any salt for 5 years due to blood pressure concerns. I had read that salt could raise BP so stopped it. Anyway, I wasn't feeling so good and checked my vitamin pills and found that none of them contained iodine. Actually one had it but I had run out of those pills and I had switched to another brand a few months earlier. Don't ask me why I didn't throw the pill bottle away, I'd then have to explain why I have so many other ones around. Anyway I decided to test the iodine issue. So I ate and apple but I sprinkled iodized salt on it. After 15 or 20 minutes I felt all get up and go energized. Better than I had felt in several months. So I ate some more apples with salt on them. They are actually quite good that way. And it worked I felt much better. So that convinced me that I was low on iodine. I decided to start eating salt again, especially iodized salt.

Anyhow, I later found a supplement containing raw thyroid (from cows) and started taking that. It helps a lot and is not something I ever want to do without. My doctor tested my thyroid and said everything is fine but he wants to take it out. Huh? I guess he has a boat payment to make or something. Anyhow, my thyroid is not fine, regardless of what his tests results say. For one obvious thing, I have a cyst on the front of my throat (on thyroid). I also have a couple of nodules that show up on ultrasound. I forgot to mention that earlier, ultrasound is a typical way to check the thyroid for abnormalities. Not an unpleasant experience just a little warm and squishy feeling.

Ok, I was getting to a point I thot...

Oh yeah, don't let your doctor do a contrast MRI on you to check your thyroid, They can get the same info using an ultrasound instead with no contrast solution. I think that's what caused my cyst. Warning, personal theory based on nothing but IMHO coming up. Anyway, I had an MRI with contrast about 5 years prior to my cyst developing. I think that caused the cyst really. Well, theories and such are worth the paper the ether paper they are printed on. Who knows, not me, that's for sure. Suspect yes, know not.

The problem with some foods is they are goitrogens, as you found about spinach and broccoli. I doubt they are problems when eaten occasionally, but nobody has studied it very much that I know of at least. Another goitrogen is soy, which a lot of people eat a lot of every day. There was a case many years ago where a company was testing baby formula based on soy. 30 or so percent of the babies developed goiters. Not a good result IMHO. But, that is another story.

Anyway, you can get raw thyroid to try also. Some people get Armor brand thyroid with a prescription from their doctor. I am not sure if it is still available, there are stories about it being pulled and restored but I don't keep up with them. You can also get raw thyroid without a prescription from many sources. Check your local vitamin/supplement supplier and ask for it. I take a raw thyroid supplement from cow (bovine) thyroid that is made in New Zealand. They have good cows in New Zealand.

@Avr, I don't know, but maybe if you told us more about the medicine you are taking, and what the growth is that it is supposed to shrink, we could figure out something on it. I have read before that sometimes people will be given a thyroid hormone supplement to give their thyroid a "rest" for a while.

0

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
      103,419
    • Total Posts
      917,670
  • Topics

  • Posts

    • Formal dinner suggestions
      You could take shrimp cocktail -- just ice it & no need for heating that then. How about following up with some coconut crusted fish with some nice veggies on the side? That could just be nuked to reheat & only takes a minute or two. Make sure when they put it in the microwave that it is covered in case there is gluten lurking on the ceiling of the microwave that can fall down into his food.
    • Formal dinner suggestions
      Hi people. I'd just like some ideas for what I can take for V to a formal family dinner. Unfortunately the restaurant has stated there is no gluten-free safe option so I have to take his meal and dessert.  I can make him gluten-free chocolate cake so thats fine.  But its a three course dinner, and I need to transport it there. Hopefully they will be happy to heat it if needed.  Something really nice and special would be good because everyone else will be eating really  nice meals.  
    • Italian pasta
      Get some celiac travel cards to print off and keep in your wallet.  Present them to your waiter.   http://www.celiactravel.com/cards/ Tell the airline that you need a gluten free meal, BUT take food with you because odds are the airlines will make a mistake.   As far as the wheat pasta.....some folks say the wheat is different.  I personally think they are kidding themselves.  There is no scientific proof that I have found to support this theory.  (Anyone want to present such data?)  Italy, from what I heard is great for celiacs.  I'll know for sure this summer!  I'll be there!   As usual, we plan on bringing some packable food, but we are good at shopping at grocery stores for food and picnicking when traveling.  I expect foods at grocery stores to be clearly marked as they were in Great Britain since they are part of the EU.  
    • Villous atrophy with negative tTG IgG/IgA, high Gliadin IgA!
      It looks like you have a few options that you need to consider pursuing: 1.  Get back to your doctor and tell him to figure out what's wrong with you.  Take a friend because it helps to have someone listen and take notes who is not the patient.  Get copies of all lab reports and doctor notes always and keep a file on yourself to share with future doctors or to monitor your progress.   2.  Ditch this GI and get a new one (SIBO is real per my celiac savvy GI).  Take a friend with you.   3.  You say you are lactose intolerant.  Experiment by going lactose free for six months -- not just a few days.  This will help to promote healing and help determine if milk (lactose or proteins) are causing villi damage and not gluten. 4.  Recognize that some celiacs test NEGATIVE to antibodies.  Per Dr. A. Fasano and Dr. Murrary, based on their clinincal experience and recent data just published, they estimate that 10 to 20 percent of celiac disease patients test negative to the serology screening test. That means consider yourself a celiac and stop your gluten intake for at least six months.  Normal vitamin and mineral levels do not rule out celiac disease.   5.  Recognize that you can multiple reasons for villi damage.  That's why a second consult with a celiac savvy GI is important.   Good luck!    
    • Continued Symptoms
      Try keeping a food and symptom diary.   She could have allergies or intolerances.  But, again, I am not a doctor!  I am healed from celiac disease, but I still react to certain foods and have allergies.  Those will probably never go away as I have been plagued with them all my life (as my siblings have too).  She could have a milk protein intolerance and not just lactose.  Eliminate all dairy too see if it helps.   Speech really normalizes by the age of 8.  I can not say if your public school will evaluate her.  My home-schooled friends are still monitored by the state and receive state funding.  So, I would assume they would receive all the same benefits.  Try calling.  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,551
    • Most Online
      1,763

    Newest Member
    Cwilson2345
    Joined