• 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

Horrible Fatigue And Other Problems
0

Rate this topic

19 posts in this topic

Recommended Posts

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.

Share this post


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

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.

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!

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.

Share this post


Link to post
Share on other sites
Ads by Google:


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.

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.

Share this post


Link to post
Share on other sites


Ads by Google:


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.

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.

  • Upvote 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.

Share this post


Link to post
Share on other sites


Ads by Google:


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.

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.

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.

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.

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.

Share this post


Link to post
Share on other sites


Ads by Google:


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.

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?

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.

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
      108,140
    • Total Posts
      939,875
  • Member Statistics

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

    Newest Member
    JosephK116
    Joined
  • Popular Now

  • Topics

  • Posts

    • Hi Sofie! Listen to KarenG.   We both had iron deficiency anemia when we were diagnosed.  Plus, I have Thalassemia which is a genetic anemia on top of the iron deficiency anemia.   Dumping iron into your system is not the solution.  You need to be seriously gluten free.  You are probably unknowingly damaging other parts of your body....like your bones.  Two months after my diagnosis, I fractured my back doing NOTHING!  Think you are just not getting enough oxygen to your brain?  Think again!  It is probably related to celiac disease.  Celiac disease is systemic.  It is not just about villi damage.   But why am I telling a college student this?   You should be researching your autoimmune illness and ensuring that you do not develop Cancer (rare) or another autoimmune disorder like lupus, diabetes, thyroiditis, MS, Crohn’s, or one of the almost 100 other Autoimmune disorders (common).    Get your antibodies down.  Your mild anemia is the least of your problems.  Raising  your ferritin level may help a little, but healing from celiac disease will help you a lot more!    
    • Let my start by giving a brief summary of what I’ve been diagnosed with. Just over the past year I’ve been diagnosed with Celiac, EOE, lactose intolerance, soy allergy, tree nut allergy. Most recently diagnosed with Ulcerative Colitis. The Colitis came 8 months after having found out I had celiac. I have never had problems with gluten in my life. Dairy was something I had to eliminate because of the excrutiating stomach pains I would get from it. But I can have gluten any day and not have a problem.  I was diagnosed with a biopsy and followed by bloodwork. But who’s to say that dairy wasn’t the cause? I just feel like the GI was very quick to jump on the diagnoses without fully understanding my medical history, prescriptions I’ve took in the past ie long term antibiotic use, accutance, and 7 years of constant NSAID use.
    • 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!  
  • Upcoming Events