• 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

Exhausted And Venting
0

Rate this topic

23 posts in 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

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

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
      108,146
    • Total Posts
      939,918
  • Member Statistics

    • Total Members
      66,132
    • Most Online
      3,093

    Newest Member
    Whhyyy
    Joined
  • Popular Now

  • Topics

  • Posts

    • Just wondering if you have an update at all? Going through the same thing at the the moment with my type 1 14 yr old. I would be interested to know what your gi said and how your daughters doing now? xx
    • Please check the date on post, you just responded and tried talking to a person from 7 years ago. On consideration to the subject Poatoes are a huge flare factor for my UC and cause my blood sugar to sky rocket...I am not even diabetic but for some reason potatoes (hash browns) that I tried a few months ago with some eggs shot it up over 400. not even a control test with table sugar managed that.
    • Have you tried eliminating high glycemic foods? Fruits, added sugars, starchy grains, potatoes. etc? Also adding in slow digesting fibers and fats can prevent insulin spikes, MCT oil is also known to help and protein. Many find consuming nuts and seeds higher in fiber early on in the meal or before a meal can slow down insulin responses and prevent spikes. I always tend to eat a hand full of whole shell pumpkin seeds, hemp seeds, cocoa nibs, etc. while fixing my food, this gets me starting to feel fuller sooner, and seems to help in over all down the road. I know I had some references somewhere to these. I know I read somewhere about the antioxidants in in whole shell seeds like pumpkin and hemp also helped the body regulate insulin levels.
    • Dear AWOL Cast Iron Stomach, Your husband is right bread is bad for you. Of course it's more than bread and gluten, until now it was amateur hour trying to self diagnose and tame this "lion". However they let you down. You slipped through the cracks over and over again it is not your fault your not the Dr. You made mistakes and errors acting like a celiac , not knowing for sure you were, and not feeling like you could fully claim to be or reach out for support . Now you know your husband was closer than any Dr. up until now to determine your illness. Now something is in your record, now hopefully you will be dismissed less,respected more, maybe they will realize its an actual condition going on- not all in your head. Will they? Who knows! Do you care? This is now official, now explained, you not only have to give up gluten, but milk, and corn. In fact give up 98% of processed anything. The cluster of lifetime symptoms were not  "just you", "in your head", "you are not a difficult patient", "when the Dr or nurse looks at you like a nut job you don't have to feel the dismissiveness and condescension. It's an illness and nothing to be shameful of  what is shameful is they and their colleagues missed you failed you. In fact being missed for 4 decades is unjust to you. You were missed time and time again from age 5 to 43, decade after decade after decade, symptom after symptom. It's not that you didn't try from the 5 year old begging to go to the Dr, to the 20 going to the hospital again for another bout of gastroenteritis hoping to get an IV, to the thirty year old saying something is wrong why is this happening, to the forty something a restaurant fed me gluten when I asked for gluten-free, I have been gluten free for 3 1/2 years ,  I have more symptoms and pain than before . I felt so good for those gluten-free years- please help me-make it stop. So many things explained it makes you experience a range of emotions. Grateful: Relief and gratefulness someone finally agreed to send you to someone to test you. She saw past the other diagnosis' and the albatross IBS diagnosis. All the ages and stages of symptoms are explained they all fit. Everyone of them! Someone else also has had them. You are not alone. Read the forum-you fit like a glove. Anger: Anger for the way you have been treated by the medical community, family, some ex boyfriends, friends and coworkers. Anger for the length of time you endured this. Hurt: Hurt for the times people said unkind things to you when you were symptomatic or flaring . you are experiencing symptoms that change your body people are rude to congratulate you on a "pregnancy" you didn't announce or ask why you are not slim when you hardly eat. you are not over emotional -  you are suffering from neuro symptoms, you are not making this up for attention Sad & Guilty: Can I work again? Do I want to work again? What kind of work can I do now? Can I find a job and work PT from home? You didn't envision this your husband having to be sole bread winner now what? I am overwhelmed thinking about this-stop? You now have closure and know how and why you lost your first pregnancy. You now know why you were high risk, complications,  with your children in Pregnancy & Delivery that they couldn't be explained back then It explains why in pregnancy you lost weight and why your morning sickness was extreme and seemed to last longer than anyone you knew,  that your Puppp rash was likely misdiagnosed DH It is not your fault none of it. Please forgive yourself for what you did not know. Your children forgive you. Believe them when they say its not your fault. You can cry, but you can no longer blame yourself. You are a good mother just one with an illness your children will learn to accept. Withdrawn: Why are you withdrawing from your husband? Should you ask him if he wants a divorce? Should you push him away? You didn't know before marriage what was happening you knew something autoimmune was brewing shortly after, but nothing showed on tests. Was this unfair to do to him? Doesn't he deserve someone better? Someone well? Now you can't retire and travel the world as society retirement cliché dictates. Can you afford this illness ? How will this financially impact your spouse, your family?. Why did you do this to this poor man? You are so selfish, you wanted marriage and kids, but was this fair to them? Don't your kids deserve a healthier mom? How will this impact them? Oh my gosh are they going to get this too? Will they grow to resent you? Your illness and diet has taken over their lives! Oh gosh no one say hi to me-please. I hate people and I am too sick to pretend and be fake friendly today. I don't want to tell you I am ill. I don't want to talk about this. I have to absorb this. I hate you people for being healthy. Don't tell me I don't look well. I will snap, I don't want to snap, I am irritable ,and don't feel well. Just keep giving off the unapproachable vibe keep them away.  Am I strong enough to do this? Acceptance: Calm down the inflammation, lack of nutrients, and GI damage is messing with your head. Your husband said for better for worse. Your kids have no choice you are their mother and you are a good mom -you have always been, always will be even on your worst day. If they get this they will be ok. You are strong enough to do this you are just ill and most importantly you must remain here in case they get this so you can guide them and be there for them. Got it? Go on the forum you are not alone it will be ok. You will get this lion back in the cage and manage it. It will be ok. If you can't travel in retirement one day you will find other hobbies or things to occupy your time. He's not going to leave you over this. If he does it will be ok. You'll manage-you always do. You have an answer, you knew it was coming, keep reading, learning, seeking support, and one day it will all work out. You will process all this and will be at peace-until then keep going and above all AVOID GLUTEN!    
    • I know for certain gastritis  is one of the main reasons I had the scope. That and my EOE symptoms . If it wasn’t for those I would have never been diagnosed 
  • Upcoming Events