Gluten-Free but Still Getting Sick?


Are you eating gluten-free but finding yourself still getting sick?

Were you diagnosed with celiac disease but struggling to feel better and get rid of the symptoms?

Well, this is the post for you!

Depending on where you are in your recovery, you will continue to struggle for months even up to 1-2 years after your diagnosis for a variety of different reasons. These are 5 reasons you might still get sick after removing gluten from your diet:

  • You are probably still eating or using products containing gluten. Not by a fault of yours (or maybe so) but you are still getting used to eating gluten-free. This is a process. You can’t cut gluten like you would peanuts so it is much more difficult to avoid in the beginning. Don’t beat yourself up over it! Each time you get sick is a new learning experience. Even people who have been gluten-free for years struggle with hidden gluten at times. Maltodextrin seems to be the ingredient that I miss on labels all the time!
  • Your body is healing. Remember you likely have gone many years with undiagnosed problems associated with gluten and so just by eliminating it is the first part, you need to take the time to allow your body to get back to normal. It has to heal itself and adjust to a whole new (healthy) way of living. You might need to have your blood levels checked to be sure your deficiencies are being covered with supplements.
  • There are other things you are reacting to that once you eliminate gluten you will realize, like lactose. It is very common for celiac to hide other food intolerance or allergies so be careful when blaming getting sick on gluten, it could in fact come from something else.
  • You could have another bowel disease-causing the distress. If eating a dedicate gluten-free diet doesn’t help your stomach symptoms, then you definitely should go back to the doctor and be tested for other diseases like colitis, Chron’s or other bowel disorders.
  • You could have another auto-immune disease-causing problems. For instance, I was suffering from Hashimoto’s hypothyroidism, rheumatoid arthritis and endometriosis. It took a whole year to figure out all of those things and once they were all dealt with, I started to feel like a whole new person.

If you are eating a dedicated gluten-free diet and your symptoms are not improving, you should seek a doctor’s opinion as to why you aren’t getting better. Unfortunately, there is a small percentage of people who do not get better using a gluten-free lifestyle so it is imperative you seek medical attention.

Another concern with gluten-free is that you have to go cold turkey. Literally, there is no weaning process for gluten removal. You must stop eating it because you will never get better if you do not completely eliminate it from your diet. I’ve written another popular post about why cheating on celiac is a horrible idea, so if you are trying to eat just a little bit of gluten – it’s time to stop.

Gluten is not like lactose. I’m lactose intolerant and can handle a small amount. If you have celiac disease, you can not handle ANY amount of gluten nor should you try to test your body. Just because you don’t physically react to a small amount that you can tell, your body on the inside is in turmoil creating a breeding ground for malignant diseases like cancer!

Finding out you have to eat gluten-free is not the end of the world. There are lots of supportive groups and resources out there for you! If you want to check out our Facebook group – you are more than welcome to join us! It’s primarily women and we are a non spam, non soliciting, self-hosting support group on Facebook.


  1.  Liz says:

    What a great post! For years doctors were blaming my symptoms on (first I was called a hypochondriac) the genetic condition I have, Ehlers-Danlos Syndrome – Hypermobility Type. Only when I had sever vitamin deficiencies did they even consider celiac again and that someone could have more than one thing going on!

    Thanks for posting!
    Liz recently posted…cinnamon St. Patrick’s DayMy Profile


    •  Rebecca says:

      I swear we could all write a huge book on the misdiagnosis of celiac disease. Everyone has such different stories with all the same theme. At least you have it sorted out now but I’m sure you would rather of had it many years ago.


  2.  Princess Shimari says:

    Hi, Can anyone explain the relationship between endometriosis and Gluten Intolerance. This is the first time that I have heard of an association and I am eager to find out.
    Princess Shimari recently posted…CONSULTATIVE MARKETING My perspective.


    •  Rebecca says:

      There are very limited studies that link the two but women with celiac disease have a 25% chance of having endometriosis. They all seem to link together especially the infertility concerns.


  3.  Cathy says:

    Rebecca, I’m so thankful to have found your blog today, because I am at my wit’s end! I was diagnosed a year ago with celiac – with a bonus diagnosis of collagenous colitis, which I thought would go away as soon as I started eating GF. Nope. It did for a while, but this is the 2nd time in a year that I’ve been able to eat basically nothing for weeks in a row. I’m sick, sick, sick…and SICK of it! So, I’m just glad you’re here with suggestions like looking into lactose intolerance (love milk in my coffee and think yogurt is good for its probiotics) or vitamin/mineral deficiencies. Thank you!! If nothing else, you are a morale-booster that will hold me over till I can figure this all out. : )


  4.  Jamie R says:

    Hey Rebecca,

    Thank you for the article. It feels good to know that you are not alone in this battle. That other people have conquered what seems very difficult, and managed to lead healthy lives!

    I don’t want to rant too long, but I feel it is important to get a little bit of detail in to be able to really see the situation.

    I have been ill for a long time (diagnosed at an age of 2, but not being able to clue together the physical and mental problems it brought with it until age of 20+). Can go as far to say I had gluten ataxia (neurological issues: slurred speech, muscle weakness, cognitive difficulties etc), constant anxiety/depression, lots of pain throughout the body, sleepless nights / insomnia etc caused by this and the list goes on.

    I’m now 26 and I’ve been on a strict gluten free diet since sept 2012. I’ve gradually gotten better, started working out and felt my health slowly creep back up. Though as things were progressing nicely I’ve now hit a road block and it feels as if the horse is starting to run backwards, upside down, across the ceiling. I’m confused. I eat “paleo” clean fish, chicken, tuna, eggs, gluten free oats (not sure about this one) veggies, rice and mostly self prepped except tikka marsala sauce which is “gluten-free” (yet again, not sure if it is safe). Also drink some milk, but have taken it on off the diet. Fruit/berries smoothies and tried hemp protein for a while (again, not sure… so I dropped it) . Potatoes gives me the worst stomach pains and so does certain foods. I take fish oil, gluten free vitamin tablets. Working out 2-3 times a week… Was seeing good weight and muscle gains, but now I’m feeling weaker and weaker for every day. Also have a lot of normal allergies, and I’m quite certain they cause reactions throughout my body (such as peanuts) and I eliminated the ones that I could tell wrecked havoc. I’m now at the point where I’m curious what to do. Head back to the hospital for further examination? Play it out and try to eliminate once again?

    So I was wondering if you have any tips on how to approach this as it seems you have gone through the same thing. Would really love your thoughts and any help is greatly appreciated!

    Kind regards,