Fact: I was diagnosed with celiac disease in (I think) April of 2008. I say “I think” because I was also diagnosed with bladder cancer and a pulmonary embolism (multiple blood clots in both my lungs) in the same time period so sometimes I forget which order they came in. Yeah…good times.
Fact: Immediately after my diagnosis, I stopped eating gluten 100% and never looked back. Well…I looked back in sadness many a time…but never caved.
Fact: From all of the celiac bloggers I began to follow and articles I read, I expected to feel better right away.
Fact: Two years later, I still felt like shit and Mrs. Dude was about to throw me out the window, if I wasn’t going to jump first.
Fact: I gave up dairy in hopes that it would help. It did…a bit.
Fact: I then stopped eating gluten-free replacement foods and just started eating…food.
Fact: And THAT is when I began to heal.
And why am I regaling you with all of these facts? Because of an email I received this morning. It reads as follows:
Oh wait…that’s my journal entry from last night. Here’s the email:
First, I want to thank you for everything you are doing. This is the only resource that makes me feel normal. Heck, I even just received your book from Amazon.
I was recently diagnosed on 12/30/2019. Happy New Year to me, right…. Needless to say, starting my new journey has been a little rough.
Why am I reaching out? I am looking for a little bit of guidance on how long it may take to heal. Some days are better than other days now, but still sometimes there is a struggle. Sleeping has honestly been my biggest hurdle. I used to be a great sleeper – so good I could fall asleep in a bar with loud music. (This is pre-glutening that I knew about).
Now, I seem to be plagued with night sweats. I’ve been to my doctor twice about it and all they can find is I’m slightly Hypothyroid. This started happening as I went GF, never before. Is gluten withdrawal for real? How long does this crap take? With golf season just around the corner in NJ, I’m running thin on patience! Can you relate to any of this?
I also want to say, you and Mrs. Dude totally give me hope. (Saw your video on YouTube). My boyfriend has been incredibly supportive through all of this. We used to love going out to eat but he’s also an amazing home chef. This is the only part that makes me feel subhuman… I love going out! Any advice here? I feel like I am trapped in my home.
Thank you!
Great email. We’ve all been there…and then some. So first I presented some facts, not I’ll throw out some advice from a celiac veteran.
Advice: Try not to compare yourself to others. Everyone has their own celiac story and everyone heals differently.
Advice: Be patient. Your intestines are pretty f**ked up right now. Healing can take time. I wish someone told me this 12 years ago.
Advice: Stay out of the gluten-free aisle of the store…for now. Try to eat as much real food as you can (meat, fish, veggies, fruit)
Advice: When you start to feel better, you can slowly introduce gluten-free replacement foods (cookies, breads, pizzas, etc.), but go easy on them and find the ones that aren’t loaded with crap. Your intestines have been through hell and back. Be nice to them.
Advice: Listen to your body. Understand that you now have an autoimmune disease and you may have stretches where you just don’t feel well. Do what you need to do to get through these stretches.
Advice: It’s an awesome community here. Never hesitate to reach out.
Advice: Understand that you’ll be able to eat out again. But yeah…it doest change the dynamics a bit. That’s just a harsh reality.
Advice: Keep your left arm straight but flexible and keep your head down. Sorry…a little golf advice thrown in for free. FORE!!!
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!
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!!
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!!!!
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.
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
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.
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.
The whole feeling absolutely awful cutting it out the first time, feeling slightly better during gluten challenge and (thankfully) not having such a hard time the second time you cut it out sounds exactly like what happened to me. I feel better knowing im not alone in that weirdness.
Hello,
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?
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.