• 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
0
glutenfree015

Exhausted And Venting

Rate this topic

Recommended Posts

I’ve been gluten free for almost 12 weeks now and I’ve been on a rollercoaster for every single one of them! First it was the stomach problems, then it was the weird shaking episodes, then it was the weight loss. Now it is the exhaustion.

I feel like I’ve got a pretty good handle on what I can and cannot eat, but I’m so frustrated that I’m still having problems! I thought that when I went gluten free I would maybe feel crappy for a few days and then I’d be a brand new, healthier me. I didn’t anticipate 3 months of struggling to figure out what is wrong, with each week bringing new symptoms! I’m on all types of supplements and a whole foods diet-- I’m taking probiotics, digestive enzymes, and a multivitamin.

Right now I am having problems with weight loss, as my nutritionist has me on a high protein diet. My BMI is in the underweight range. New this week as well is extreme fatigue. I’m a student, so I am constantly running around and fulfilling commitments, and I really do not have time to be sick. I don’t know what is causing the fatigue-- I was just home for the weekend and even though I slept a ton I am still tired. I definitely do not have mono. I want to go to the doctor, but I’m not going to be able to until Christmas break! Even if I do go, he does not think I have Celiac since my blood test was inconclusive, and he does not believe in gluten intolerance. I really don’t know what to do.

I’m really scared that something is wrong and I’m tired of feeling sick. Does anyone have any ideas or reassurance?

Share this post


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


It sounds like there is still a deficiency of some kind, maybe in a vitamin/nutrient or a remaining absorption issue if the weight keeps coming off. Are you taking in more than you burn through normal activities in terms of calories/fat or is your metabolism on fire and burning it faster than you can bring it in?

Have you tried adding any fats to your diet? By fats, I mean good fats, such as through nuts, dairy, etc? Biggest worry to me would be the weight loss and fatigue, with the fatigue probably tied to why you are not keeping weight on due to lack of absorption. Unsure, but worth asking your dietician and GP.

Share this post


Link to post
Share on other sites

Your multivitamin may not be enough, in fact it almost assuredly isn't enough, if you have any of the normal gluten-caused nutrient deficiencies. Have you had testing done for Vitamin C, B12, iron/ferritin, folate, potassium, magnesium, and have you had your thyroid checked. Any deficiencies in any of these can cause lethargy and fatigue and require more supplementation than a multi (although the multi might keep you from going further in the hole). You really need to get these levels tested, because blind supplementation isn't going to help either. Although you could start with a sublingual B12 methylcobalamine which will not do any harm because any excess is excreted and since it dissolves under the tongue it is readily absorbed. This is the problem with a damaged gut - you can take the multivitamin but there's no way of knowing if your body is actually receiving it in the cells. I take Vitamin D (yes, still) in gel caps filled with an oily substance for better absorption, and I still take B12 shots because I am one of the weird ones who breaks out with sublinguals. And these are just holding my levels stable.

  • Upvote 1

Share this post


Link to post
Share on other sites

I agree! You may have a deficiency in Vitamins B12 or D, magnesium, or iron...or you may have a thyroid condition. However, I also agree that you may not be eating enough healthy fats, which are essential for energy and proper functioning of your brain. You should be eating organic butter, nuts and nut butters, avocados, and olives on a regular basis. People generally don't understand that healthy fats are more crucial to good health than proteins and carbs--early man subsisted on protein and fats alone, and fats especially were coveted because they provided so much energy.

Share this post


Link to post
Share on other sites

I had chronic fatiuge where I could sleep 12 hours and still need a nap. Turns out I had a pretty severe vitamin B1 deficiancy. I also have a vitamin d deficiancy. I had a multi, 2400 D3 and 100 mg of b1 a day and its getting better. Its a slow process though and we are waiting to see if my numbers are better or if vitamin injections are needed. Can you get a vitamin panel run at school?

  • Upvote 1

Share this post


Link to post
Share on other sites
Ads by Google:


I'm not sure if it's much of a valid indicator, but I began supplementing with iron, B-complex (very strong levels), D3 gel (5,000 IU), multivitamin, magnesium (250mg), omega 3/6/9 gel, calcium and probiotics. What I noticed early on was that my stool turned green. That's a positive sign that the iron was absorbed and excreted. When I was glutened I lost my energy again, had muscle weakness and I could tell the iron was no longer being absorbed because it went from green to a medium brown again. I also had steatorrhea at the same time. I stuck to my routine, doubled up on probiotics for a week, and now my stool has returned to a green color so I am positive the iron is once again being absorbed.

In addition to the iron, the B-complex is a powerful one from GNC, covering all B vitamins. When feeling well my urine is almost a neon yellow. When glutened I hardly saw signs of the vitamin in my urine. After a bit over a week from being glutened and feeling better, the neon is back. I take those colorations as an easy signal to know if my body is absorbing. Sure, it's not a medical indicator but it's a bit of an eye opener for me that something is going on. The pain was the first clue, but for someone not feeling pain it could be another way to know if absorption is down.

Share this post


Link to post
Share on other sites

Any doctor worth their pay would do a biopsy if you think you have gluten issues. I strongly recommend this, especially (although definitely not only) since you didn't say the blood test was negative.

Share this post


Link to post
Share on other sites


Ads by Google:


Thanks everyone, I agree with you all on the vitamin aspect. I am going to see if student health can run a vitamin panel, otherwise I will have to wait until Thanksgiving. My parents keep telling me its normal to be tired because I am so involved with school, but it is a very peculiar kind of fatigue-- almost like my arms and legs weigh a thousand pounds and I have to drag my body everywhere. Is that what vitamin deficiency fatigue feels like?

Cavernio, I agree with you there. I had the blood test, and the result was negative--however my total Iga was really low. My naturopathic doctor called a celiac specialist and he said that it sounded like a false negative. By the time I got the results though, I was a week into my first semester of college and would have to wait 3 months to get the biopsy, so I just decided to go gluten free. However, my pediatrician is convinced that I do not have Celiac because I did not have weight loss before starting the diet. It is a very complicated situation.

Share this post


Link to post
Share on other sites

You say you are eating whole foods. Are you able to cook them yourself or do you have to rely on the dining hall at college? You may still be getting some cross contamination if you are not cooking yourself. Since you are already gluten free it would be difficult to go with an endoscopy for diagnosis. Unless you were constantly being cross contaminated or were very damaged before starting the diet chances are it would be negative with you being 3 months into the diet. You mention your regular doctor is a pediatrician, perhaps it might be a good idea to find a GP to take care of you. If you have insurance you could make an appointment with one in the city where you are at college. Just check to make sure that they take your insurance when you call for an appointment. If you post a query on the Doctor's thread and let us know about where you are located someone may know of a celiac savvy GP or Internist in your area.

Share this post


Link to post
Share on other sites

I went through similar things to you, with tiredness and shakiness etc. (this is a very simplified version as I was in fact very ill for a long time). I was suffering from malabsorption of nutrients due to celiac. It would be wise to get your vitamin and mineral levels checked, also your thyroid.

Share this post


Link to post
Share on other sites


Ads by Google:


Have you had your thyroid checked? Losing weight and shakes could be Graves or Hashimotos (switching hyper to hypo). Thyroid problems can cause the same symptoms as celiac but it is about 10 times as common. If you are having it checked, check the TSH but also check free T4 and TPO Ab if possible. With hindsight I can see that I've had hypothyroid problems for about 15 years but my TSH only went off kilter recently; I am fairly confident that if doctors had actually checked my thyroid hormone levels (free T4) or for thyroid antibodies (TPO Ab) my hypothyroidism would have been detected a decade earlier.

Best wishes.

Share this post


Link to post
Share on other sites

Thanks everyone! I had some blood drawn at student health today, they are checking my iron, B12, and folate levels. They didn’t check my thyroid because it was fine back in August, but if the labs are normal than I may ask them to. The doctor feels pretty confident that it is low iron, since I have been anemic for the last year, but I guess we will see. I’m hoping it is a vitamin problem, since that is relatively easy to fix!

Ravenwooglass, I do cook all of my meals for myself and I am very careful, so I don’t think it is a CC issue. I am looking to switch doctors soon so I will definitely consider getting a doctor closer to school!

Share this post


Link to post
Share on other sites

I see in my post previously I mistyped Vitamin D as C -- D is one of the most important vitamins in our bodies and one that celiacs are frequently deficient in. It is one that should be checked - besides all the other functions it controls, lack of D can lead to osteoporosis. I am sorry for the mistake.

Share this post


Link to post
Share on other sites

Thanks Mushroom. I was vitamin D deficient last year, so I may just pick up a supplement at Walgreens or something. My levels were never checked to see if they got back to normal and I stopped supplementing last spring. I realize it is not a great idea to supplement blindly, but adding an extra 1000 IU a day until I can get home to see my regular doctor probably can’t hurt.

Share this post


Link to post
Share on other sites

Thanks Mushroom. I was vitamin D deficient last year, so I may just pick up a supplement at Walgreens or something. My levels were never checked to see if they got back to normal and I stopped supplementing last spring. I realize it is not a great idea to supplement blindly, but adding an extra 1000 IU a day until I can get home to see my regular doctor probably can’t hurt.

Actually, adding an extra 5,000 iu a day wouldn't hurt. If you were deficient last year and have just gone gluten free you are no doubt deficient again. :)

Share this post


Link to post
Share on other sites


Ads by Google:


At a doctor's appt. yesterday she told me that supplementing 1k iu of d/day for a year equals apx. 10 point increase in a year.

Soooo....for us that are severely deficient it will probably take time to get in the higher range of normal, even if we are on high doses. We do generally have absorption issues :).

Share this post


Link to post
Share on other sites

Why does your nutritionist have you on a high protein diet? When you are healing the last thing you need is unnecessary restrictions. You need carbs and grains for energy!!! My nutritionist is a college professor in nutrition and she is against high protein diets for a whole lot of reasons, and for someone who has been sick those reasons are all doubled. No wonder you're so tired. Get off the high protein diet and eat carbs!

It's too late for a biopsy. You are already gluten free and unless you have zero gluten issues you will get very sick going back on gluten long enough for a biopsy. A biopsy is looking for intestinal damage, which means you have to intentionally cause destruction to your intestines with gluten to get a positive. You have to eat a lot of it for many weeks to do enough damage to show up on those shoddy tests.

Eat healthy, whole foods, but please eat plenty of carbs to give you energy.

Healing takes time. It took me 6 months to have one symptom free day. Give it more time.

People with autoimmune disease (I'm going to assume you have celiac and the test was a false negative), tend to get dehydrated. I needed to replace my electrolytes for several months, I drank good old Gatorade and it helped a ton. I tried other electrolyte supplements and all of them made me sick.

Hang in there. It will get better.

  • Upvote 1

Share this post


Link to post
Share on other sites

I know it sounds easy to add vitamins and minerals....but, really, if you have celiac, you won't be able to absorb these nutrients no matter how much you supplement. If you decide to take Vitamin D, please consider taking Natural Vitamin D from Country Life, because it provides both Vitamin D and A (in the correct ratio) as well as medium-chain triglycerides to help you absorb the vitamins. I took 50,000 iu of Vitamin D for six months with absolutely no change in my Vitamin D levels because I couldn't absorb. However, I've taken only 400 iu of the Country Life brand for six months, and now my level is at 53. This is the highest level I've had in my entire life!!

If your ferritin level is low, you might consider asking to receive intravenous iron--simply supplementing with iron may prove futile if you can't absorb it.

Share this post


Link to post
Share on other sites

Also consider counting your calories, you may not be taking in enough if you eats lots of veggies and fruits

Share this post


Link to post
Share on other sites

I just got some of my blood results back, and my ferritin has finally gone up for the first time in over a year! I’m so excited! 3 months gluten and free and it has gone up 16 points. Still waiting on the vitamin D results, but I started taking 5000 IU a day last Friday and I have been feeling a little better since Monday, so I’m hoping it is connected. I’ll post back when I find out if I am deficient. My school is putting me in touch with a nutritionist to address the weight loss concerns.

Thank you everyone for your input and encouragement. One of my close friends was just diagnosed with Crohn’s, I feel lucky to have a disease that can be largely controlled through diet. Best wishes to you all and your health!

Share this post


Link to post
Share on other sites


Ads by Google:


I am hacking into your post:) I am a newbie and I cannot agree enough with what the other posters are saying!!! Hydration, high calories, and no cross contamination! I am curious to know what your vitamin levels come back as. Did they test your B levels also and I missed it in your posting?

Share this post


Link to post
Share on other sites

My vitamins all came back very good. My ferritin was a 38 (up from 22 in August), my B12 was actually higher than the normal range, and my folate was good too. They’re testing for Vitamin D now, which I have a hunch is low.

Share this post


Link to post
Share on other sites

Also my vitamin D is low! It was within the normal range, but at the very bottom. I have a feeling that explains why I have been so tired and achy. Thanks everyone!

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
      108,424
    • Total Posts
      941,206
  • Member Statistics

    • Total Members
      66,350
    • Most Online
      3,093

    Newest Member
    Celeste McGee
    Joined
  • Popular Now

  • Topics

  • Posts

    • I am worried about the cost but I think having that test done would help me rule things out. Either way I need to see a G.I my issues are getting out of control.
    • Thank you for all the information. I am sorry for the late reply to everyone. I have been feeling worse and worse lately. Got the blood test results, it came back negative. Seeing a G.I specialist in three months (too long for me :/) I've been keeping a food diary and realize I feel worse after eating gluten. After the G.I I want to start the diet. I'm going to call him and see if I can get seen sooner. The bloodwork said theres no signs of inflammation and they don't suspect it to be autoimmune but they want me to do the diet anyway. I wish I had answers because my vision is getting worse, cramping, nerve pain and trips to the bathroom are amplifying. Meh. Also I have a vitamin d deficiency so I am taking d3 2000iu with vitamin b12. Thanks for the help! 
    • I'm sorry you are dealing with this. My son deals with food intolerances that are not identified by any biomarker as well. I hear the same response from doctors in that, "if the food makes him feel bad then it's probably best to avoid the food." (Thanks for your insight doc!) His symptoms are not dermatological though. His symptoms are mostly neurological and psychiatric with some bloating and mild digestive issues. He loses his mind quite literally if he digests gluten. Also develops what is known as a stereotypy, involuntary movement of hands. He is otherwise a normal child. We are unable to obtain any kind of diagnosis though.  I know you're avoiding a lot of foods right now, but don't get discouraged. It's just a way of life and you're doing the right thing. Right now we are avoiding foods such as soy, all types of grain, chocolate, dairy and nightshades. I have limited his iodine intake as well. I have personally found that gluten, iodine and soy cause intensely itchy blisters and joint pain for me. Perhaps have you tried cutting back on iodine intake?
    • It is entirely possible to get a safe meal at an airport.  I always go to the high end places and that makes a difference.  I have no idea what they have at LAX but Legal Seafoods, if they have one there, is ALWAYS safe because they follow strict protocol for Celiac dining. I ate at the Boston one on my Colorado trip in October and it was excellent and I never had a problem.  The menu is limited for gluten-free at an airport but who cares......all I wanted was a safe meal and that is what I got. The baked fish was delicious.  They even had gluten-free cracker crumbs for the topping but that is Legal's...they do good work for the Celiac community.  The manager oversees the meal prep for food allergy folks. In Denver, there was a Wolfgang Puck's for breakfast. They had prepackaged fruit salads which were very good.  I took a leap of faith and asked the server if they could make me a gluten-free omelette, in a separate clean pan and they were very accommodating.  They had an open kitchen so I could watch them make it.  I could not order the other stuff that went with it but the omelette was delicious and I never had a problem. It can be done but you have to be careful. There was a place that advertised gluten-free sandwiches in Denver.  You could see the guy making the sandwiches. I ran from that place because there was bread all over the place and no way could they make that space safe for a Celiac.  A lot of the places had open kitchens so you can watch what they do and that makes a big difference.  Check out the restaurant listings on-line as they are listed. Have a great trip!
    • You are a nice person, Ennis, to do this for Thanksgiving!  If I were in Texas, I would feel safe eating your food and it sounds delicious! To have an allergy safe meal served in a church is a wonderful thing. 
  • Upcoming Events