Jump to content
Celiac Disease FAQ | This site uses cookies GDPR notice. Read more... ×
  • Sign Up

Help! On The Diet For 18 Days And Still So Fatigued

Rate this topic

Recommended Posts

So I've been gluten-free (or so I believe) for 18 days. There was a 3 or 4 day period where I felt GREAT, my energy returned and my fogginess cleared. Sadly, it was short-lived. I can't figure out if I'm repeatedly getting glutened or if something else is affecting me. My most troubling symptoms are fatigue and foggy-headedness; I just feel so weak and tired. I've been so diligent reading labels and eating as many natural and fresh foods as possible (plain meats with light pepper, fresh fruits and raw vegetables).

I've gradually started cutting out caffeine (switched from coffee to tea for a few days, and today had neither) and am considering cutting out dairy while my body heals. My question is, can this extreme fatigue only be the result of hidden gluten, or could something like lactose intolerance also cause this fatigue? I am getting tested on Tuesday but I know it will be a while before I get the results. I'm not having any GI issues (my main symptoms before diangosis were anemia, extreme fatigue, weakness and dizziness). I've been on gluten-free iron and b12 supplements for 6 months. The worst part is that I finally got a taste of what it's like to feel better and then I can't seem to get back there.

If I'm being extremely diligent and still feeling awful, am I just missing something? Or were those few days of feeling better psychological and the real relief will come soon? I've read it can take up to 3 months to feel better, but I won't get there if I'm getting glutened along the way! Please help!

Share this post

Link to post
Share on other sites

It could be either, it can be frustrating.

Be sure to eat lots of "good" fat such as found in nuts, seeds, gluten-free peanut butter and avocados and olive oil, to provide slow burning fuel. Eggs are also high fat and high protein. You may also need to eat some sort of starchy vegetable, such as beans, (well drained and rinsed), potatoes, or corn, to get enough carbohydrate.

Too much rice combined with too much fruit, for me, if I am not exercising heavily that day, really messes up my blood sugar and will nearly knock me out.

A lot of us react to soy so you may want to cut that out, also, you can try cutting out dairy. I was able to reintroduce organic dairy if it doesn't have lactose, after a few years, but I have to be careful. I use coconut milk or hemp milk if I put white stuff in coffee or tea. One brand of the hemp milk gives me headaches, I think it is their rice syrup, which I avoid now.

Go over your medications if you take any, to make sure they are gluten free.

A lot of people have problems with Rice or Soy Dream beverages because they use barley malt enzymes to process the rice syrup or beverage, so you may want to switch to another brand.

You're probably just missing something. I made several loaves of gluten-free bread with something that was messed up, I couldn't figure it out until one day I skipped the toasted piece of bread for breakfast. REALLY annoying. Well, it turned out I was reacting big time, for reasons unknown, to this gluten-free yogurt, so I had to switch brands.

I leave dairy OUT of my baking now, one less thing to worry about.

Share this post

Link to post
Share on other sites

I went off caffeine in March, seriously I was messed up (as in thought I was losing it messed up, I felt horrible). ...even more with being on gluten. So I can hazard aguess that by cutting back on caffeine, gluten, etc that your body is mot very happy right now. I did have to cut out dairy, soy when I went gluten free in June, I felt great for about 2-3 days then all heck broke loose and I had almost 3 weeks of extreme fatigue, heart palpitations, just feeling awful. I feel so much better now so I know the diet is really helping.

Also defintly make sure you aren't glutening yourselfother ways. I would stick with protein, veggies, fruit..safe foods during this time. I also eat millet bread but its only one slice a day.

Hope you feel loads better soon!

Share this post

Link to post
Share on other sites

Keep the faith! Healing can be a long process. Progress can be steady, but slow as most people don't experiece dramatic changes in just a couple of weeks.

Avoiding all the "hidden" glutens is key also.

Also, make sure your doctor knows you have been gluten free for a few weeks prior to being tested. Absence of gluten before the tests can lead to false results. If you're getting a biopsy, no matter, the doc will be able to tell. If its blood tests for markers you may get negative results as you have not had gluten exposure in a while

Best to you - stay persistent - you will get better!


Share this post

Link to post
Share on other sites

Hi Everyone, I've just found this site and am interested in all your replies about this "still feeling tired"

I haven't been diagnosed with gluten intolerance but was diagnosed with ME?Chronic fatigue over 20 years ago.

About 5 weeks ago I happened to get hold of the book Is Gluten Making you ill by Shari Lieberman. I was absolutely gobsmacked because although I had known for years that I had a lot of problems with my gut and bowels, my doctor had never suggested I had the gluten test although he did say I might have IBS. I just couldn't believe the amount of problems gluten caused and decided then to try the gluten free diet for a couple of weeks just to see how I felt.

Well the first week was really good and I did have a lot more energy my joints in my feet had been very swollen and they have all gone down, also my diarrhoea and loose bowel has cleared up, in fact I have gone the other way but the crunch is, that after being on the diet for 5 weeks, I also am really so so tired. My head is like fog again and in the mornings I just cannot seem to wake up, feeling that I have taken sleeping pills or something.

I have just had what I think was the flu which started about 2 weeks into the diet but this fatigue had already started by then.

I was interested in reading that one of you said that rice had upset your blood sugar levels because this is one of my staple diet products. I am on Rice Milk and also eat 3 - 4 rice cakes every day. I did try the gluten free bread but still have an intolerance I think to the maize in it because it just bloats me but on thinking the first week I was eating the bread but then switched to the rice cakes.

I know I should probably go for the test but cant face the doc saying no its negative when I know at least it is helping my joints.

In her book Shari Lieberman says it can take up to 3 - 6months to start feeling well so I am quite prepared to stick it out.

Share this post

Link to post
Share on other sites

Hi Jillian,

I, too, think it sounds like withdrawal. Both my daughter & I went through it. Initially, we both felt wonderful--about 5 days for my daughter and about 10 for me. But, then we felt just awful! It felt like the flu with extreme fatigue, body aches, nausea, headaches, etc. I remember posting here too, trying to figure out what was up. I also called my nutritionist & asked about it. Turns out it was withdrawal from gluten. My daughter's lasted about a week, but mine lasted a full 5 or 6 weeks. Ugh. When we did make it to the "other side", we felt super. So, please hang in there. A month or two or more is not unheard of. Plus, I'm sure ditching the caffeine at the same time is taking its toll. Incidentally, my nutritionist did recommend taking charcoal caps (found ours at Whole Foods) to speed up the elimination of the toxins. We did do that, but I really couldn't say whether or not they helped because we didn't have anything to compare our experience to. Best of luck to you! Hope you feel better soon!


Share this post

Link to post
Share on other sites

Thanks so much everyone for your words of encouragement :) It helps to know I'm not the only one that has gone (or is going) through this. I already had my blood work done in May and endoscopy in June so I am not worried about skewing any test results. I will keep searching for hidden sources of gluten and will try to be patient as my body adapts to a new diet. Thanks!

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

  • Top Posters +

  • Upcoming Events

    • February 27, 2019 04:00 PM Until 08:00 AM
      Celiac Emotional Healing Support Group
      Again you are invited to join Johnny Patout, LCSW for Baton Rouge's first emotional healing support group meeting to assist those living with celiac disease manage the emotional challenges so many of us face. Most often the emotional disturbances include depression, disinterest in normal activities, insomnia, grief, mood changes, anxiety, inability to concentrate, extreme concern about managing a gluten-free lifestyle and other emotional and behavioral challenges.
      The professionals at Jamestown Avenue Counseling Center created the emotional healing support group to give us a safe place to begin to process our emotions and support each other as we heal emotionally while managing celiac disease and the resulting autoimmune disorders.
      The emotional healing support group meets every Thursday, 6:00-7:00pm, at the Jamestown Avenue Counseling Center of Baton Rouge. Jamestown Avenue Counseling Center is located at 4637 Jamestown Avenue, Baton Rouge, Suite B-1. Suite B-1 is upstairs.
      The support group is free and open everyone managing celiac disease. For more information: emotionalhealingforceliacs@hotmail.com
    • March 24, 2019 Until March 27, 2019
      NEW ORLEANS GOURMET GLUTEN-FREE mini GETAWAY    March 24 ~ 27, 2019   We have arranged a fun and Gluten-free food filled mini in the city known for it's food and fun.  We have arranged to eat many of the famous dishes that aren't usually Gluten-free at a few of the World Renown restaurants.   Staying at the Royal Sonesta Hotel on Bourbon Street in the center of the French Quarter, you'll be able to enjoy the ambiance of the city at all hours.   Our itinerary will include a Luxury Coach tour of the city and surrounding area - Admission to The National World War II Museum, including the Tom Hanks" 4D film "Beyond All Boundaries" - an exciting Airboat ride and tour through the Bayou.      This it the 3rd time we have visited New Orleans and it has always been well attended, so join us even if you've been there before.  Check out our website for the complete itinerary and cost.    Due to contractual obligations we must have 20 participants by October 31, 2018 to make this a go.      If you have any questions just give us a call at 410-939-3218.  Bob & Ruth info@bobandruths.com (410) 939-3218
    • March 30, 2019 Until March 31, 2019
      Nourished Festival is a family-friendly event with 10 locations across the US. Attendees will be able to sample food, health and beauty products, meet with companies, learn about the most current food lifestyles, receive coupons and attend educational sessions with industry experts. 
      Nourished Festival, managed by The Nourished Group and presented by Enjoy Life Foods, is the largest gluten-free, allergy-friendly and specialty diet event in the US, with 10 locations including.
      Managed by The Nourished Group, formerly The Gluten Free Media Group, The Nourished Festivals are the largest and fastest growing special diet consumer events in the United States. Started in 2007, the events have expanded from one to ten cities throughout the country. The festivals cater to anyone looking to lead a healthier lifestyle or those who follow a specialty diet due to autoimmune conditions, food sensitivities, allergies or intolerances. Offerings including Paleo, Keto, Plant-Based, Gluten-Free, Allergen-Friendly and Nut-Free products. The events provide the opportunity for attendees to sample and purchase new products, receive coupons, meet with brand ambassadors and attend educational classes with industry experts. For more information, visit http://www.nourishedfestival.com