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    Hey there! Welcome to the Club! Healing is the challenge and it can be done but you have to listen to your body. When the GD stated to stay out of the GF isle… he means really concentrate on giving your body healthy, whole foods with no processing to allow it to heal! I tried to eat like I always did at first too- gf pizza. gf bread, gf garbage and it wasn’t until I started eating whole foods (mostly plant based for me) and gave up the dairy I felt some relief. It’s been 6 years now. My quality of life is 80% and I am still healing. I incorporated Acupuncture once a week, some yoga, and lots of herbs. I did lots of cleanses and juice fasts to clean my body and allow it to get rid of damaged cells. Also, learning that my body cross reacts to certain grains…especially oats. I think the biggest thing is gluten hides everywhere. I am still finding things…especially now that they are making all those paper plates and straws from wheat. You can eat out- You just have to find places that have your health in mind. If there is ever a question be okay with a cup of tea, cocktail or water until you get home. You are BLESSED to have a supportive partner. It’s GOLD! Heal well my friend! GD is the best resource for no BS out there!

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    Healing takes times! I think 6 months before I really started seeing a difference. I’ve always had sleep issues and it’s continued. I take a little Benadryl or melatonin at night( read label first) and that helps to fall asleep. I’m always tired in the mornings and sometimes I wake up and go nap on the couch! Healing is different for everyone. Take care of your body, eat healthy, maybe try massage, acupuncture, or something less western medicine to help healing. I also take a probiotic to help my gut. I hope your healing gets better each day!!

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    I think it takes time as you slowly replace your cutting boards, cookware, utensils and knives.

    I was being cross contaminated by my spouse. Not purposely. I keep very little gluten in my house for my NonGF family. They can go outside my home and indulge. No one is my bigger advocate than my kids, now 25 &23. I’ve been diagnosed for almost six years and they’ve seen the difference.

    I had gastric sleeve surgery 4 years ago and it really made a huge difference for me. I was undiagnosed for 50 years!!!!

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    Listen to everything that Gluten Dude has said. Whole, natural food is best. In time, you will see things getting better. Additionally, further investigate your thyroid because Hashimoto’s disease is connected to Celiac disease. I just found this out the hard way. I removed gluten from my food, hair and skin and still had issues. Turns out, Hashimoto’s was also lurking around undiagnosed. 100% automimmune diet is just a few extra steps from a gluten free diet.

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    Welcome to the not so fun club. 🙁
    Here’s my two cents…
    Make sure you are using cookware and cutting boards that have not been in contact with gluten. This was my issue in the beginning. Also take L- glutamine to help heal the intestines. Read the labels on any GF food you buy as so many companies only put GF on the label for marketing and they also make mistakes. Read DRINK labels too. Gatorade contains gluten (or at least it used to) avoid alcohol for a while until you heal.
    Hope you feel better soon

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    I’m still trapped in my home most of the time. I had a rebound but it was short lived and involved expensive IV treatments (like massive doses of Vitamin C, choline, B12 and other nutrients). I was diagnosed December 2017 so I tell myself it’s only been a bit over two years and some people take longer to heal than others. I was diagnosed with anemia, without a follow up Celiac screening in 2005 (in my 30s). So that tells you how long it’s been going on. And I had horrible gut issues as I grew up. My mom learned how to cook for me to keep it minimal, but it still involved wheat bread. So I have a lot of healing to do and multiple vitamin deficiencies to work out. Who knows I may have been a childhood Celiac and didn’t have it diagnosed. I certainly was emaciated.

    I think it’s nuts that we don’t offer IV vitamins to people who have obvious problems absorbing nutrition. I can’t afford to keep the treatments up. If I had it for 6 months, I’m sure I”d recover.

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    I don’t know if gluten withdrawal is a recognized process, but I feel your pain. The massive change in gut flora might be a culprit for feeling awful when you eliminate gluten, as some of the bacteria die off and release toxins. It’s a big adjustment for your system. When I initially cut out gluten I actually felt like garbage, and this was of course not the way all the Pollyanna “You’ll feel so great!” messages out there told me I should feel. I did NOT feel great. I had migraines, I had to lie on the couch most of the time for a few weeks, and my guts were mad at me. I Googled this like crazy, thinking something was weird, but I didn’t find much helpful advice except something about “healing crisis”. I finally got in touch with my ND (when I had the energy) and the strong multi-strain probiotics she recommended helped me transition through until my system settled a few weeks later. In my case, I’d cut gluten out prior to my diagnosis because I did not want to continue eating gluten for the two years I was told I would have to wait to see a GI specialist (I am in Canada). When I was unexpectedly given a biopsy date a few weeks later (woot!), I did a gluten challenge and thought it would be awful, but it wasn’t as bad as cutting it out in the first place had been. (I have no idea why; maybe the lack of anxiety because I no longer had to be vigilant?) When I cut gluten out for good after my diagnosis I didn’t have the same horrible symptoms as the first time I eliminated it, and I have no explanation for this either; I just thought I’d share in case it helps anyone else normalize their experience.

    Oddly, after cutting out gluten coffee began to hurt my stomach and I can’t drink it anymore. I think everyone’s body has its own idiosyncrasies for healing; just as the massive inflammation of this autoimmune disease can hit us all in unique ways, we heal in our own unique ways. Best of luck to the emailer! Don’t feel like you’re weird if you don’t feel like you’re better right away. I have yet to meet anyone with celiac who felt awesome right after cutting out gluten, but I’m kind of new at this, too.

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    Heather Henriksen

    Unlike you, after my dx I felt good 90% of the time gluten free. For the past month I’ve had gastrointestinal stuff every day almost all day. Due to Covid19, my appointment with a new gastroenterologist was cancelled. My primary now has me on meds for reflux. ? I’m wondering if I have SIBO. I’m moderately miserable every day. I’m following a low Fodmap diet. We’re you tested for any other conditions or have knowledge of these issues?

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      If you’re in the US, I think you need to contact your doctor. There’s a very well publicized comment that was in the news of a woman from Georgia whose Covid-19 symptoms were GI related (even to the point of vomiting blood, sorry to be graphic). Only your doctor can order a Covid-19 test in most states that the only way to get one, outside of an emergency room. And don’t do that, they’re overwhelmed enough. I’m not aware of any test for SIBO, but if the doctor suspects it, even a GP, they can prescribe xifaxan. That’s assuming you haven’t been exposed to low levels of gluten, which can make you sensitive once again to milk, and fodmaps if you already have a Celiac diagnosis.

      Think back, and what did you eat about 3-5 days before the new SIBO/fodmap intolerance issues started? If it was me, I’d assume something back then was contaminated with gluten.

      But talk with your doctor, even in this crisis, we all need medical care.


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