Although it is not entirely accepted across the conventional healthcare system, in 2009 Dr. Alessio Fasano, a world-renowned pediatric gastroenterologist and research scientist, published a landmark study (for those interested Chris Kresser interviewed Dr. Fasano on the findings in 2012) showing that gluten may be a factor in many autoimmune diseases, not just celiac disease. (1) In his research he showed that gluten triggers the release of zonulin, a molecule that opens the tight junctions of intestinal lining, making the gut “leaky.” The resulting leaky gut, he suggested, contributes to the development of many different autoimmune disorders.
That work from Dr. Fasano was groundbreaking and most of us in the AIP community didn’t have to be told twice. We work to avoid gluten in our diets, regardless of a celiac diagnosis, because we know from personal experience that what Dr. Fasano uncovered has merit. Gluten is just not worth the setback for those of us with autoimmune disease!
Despite our best efforts though, gluten sometimes sneaks its way in. Food ingredient labeling laws help a lot and in just the ten years since my own celiac diagnosis, understanding and accommodation has come a long way in not just restaurants and other public venues, but also in the general public. Even so, getting glutened happens. This guide is all about getting you back to feeling your best quickly.
Why Does Gluten Make Us Sick?
As a health coach, I’m a big fan of why, because it usually helps my clients better embrace changes that benefit their health. At the same time, I try to keep that information simplified and focus on action over drowning in paralyzing information! We already touched on Dr. Fasano’s research, but let’s see if we can boil this “why” down further.
Gluten is an especially toxic lectin (a class of protein that is part of a plant’s defense system) called a prolamin. It’s not easily broken down by our digestive enzymes and the fragments then match with receptors in the membranes of the cells that make up our intestinal lining. That “match up” is what stimulates the release of zonulin inside the gut and starts the “leaking.” Once the tight junctions are open, bacteria can leak through which makes our immune system mad, so it produces antibodies, which leads to inflammation. The impact of the inflammation is what makes us feel so terrible.
As always, if you’d like to dive much deeper, we recommend you check out what our friend, Dr. Sarah Ballantyne, has written on gluten. (2)
Signs and Symptoms of Gluten Exposure
Chances are good that you know your personal gluten reaction well, but with celiac disease specifically having over 200 symptoms, it’s smart for those of us with autoimmune disease to have a good understanding of common symptoms. Doing some food journaling can help you develop an awareness of how gluten impacts you individually. Common symptoms include:
- Diarrhea
- Constipation
- Vomiting
- Nausea
- Abdominal pain
- Mood swings
- Numbness
- Fatigue
- Skin issues/rashes/mouth ulcers
- Headache/migraine
- Joint pain
Don’t discount symptoms that aren’t gastrointestinal! While GI symptoms are a common sign of gluten exposure research shows among adults with celiac disease, only a third experience primarily GI symptoms. (3) In my personal experience, gluten caused mood swings, paralyzing anxiety, stuttering, trouble with my fine motor skills, and more. GI symptoms weren’t that profound for me, even after a decade without diagnosis and lots of damage to my small intestine.
Managing A “Glutening”
So, you went out to Great-Grandma Helen’s 90th at a restaurant you weren’t feeling so confident about and even though you tried your best, you woke up with your classic glutening symptoms in the middle of the night. How do you manage?
- Start by focusing on hydration. Get plenty of fluids and consider adding a pinch of sea salt to each glass of water if you are experiencing diarrhea or vomiting.
- Consider a binder. Activated charcoal binds toxins and can decrease gas and bloating. Do this with caution though, because it will interfere with medications and can lead to constipation if you aren’t drinking lots of water.
- Add an herbal tea to help with GI pain. Peppermint, chamomile, and ginger are especially effective at calming cramping, gas, and nausea.
- Add healing elements. Now is the time for bone broth, stirring a little collagen in your herbal tea, or l-glutamine. These options are focused on the amino acids that can help repair the gut lining. You could also consider herbs that coat the gastrointestinal tract and soothe it, like slippery elm and marshmallow root (like charcoal, these can impact medication absorption, so talk to your doctor).
- Keep your diet simple. For a few days keep your diet to easily digested foods (chicken soup, for example) and not too much fat (it can have a laxative effect, which you might not want if you’re experiencing diarrhea). As your system feels less raw, start focusing on omega-3 rich foods that are anti-inflammatory, like salmon, well-cooked veggies, and consider avoiding dairy and sugar, even if you are no longer in AIP elimination phase.
- Get some rest. Getting glutened can leave you feeling like you were hit by a truck. Prioritize as much rest as possible.
Pro-tip: As a celiac myself, I’ve found that healing from gluten exposure goes faster if I am getting lots of sunlight and prioritizing beef liver. I suspect that the Vitamin D production and incredible nutrient density of the liver are what helps.
What About Enzymes?
I know, I know . . . you’ve heard there are enzymes you can take that will help you digest gluten more rapidly and end this terrible glutening in no time. Your favorite functional medicine practitioner might even be selling them on their website and you’re wondering why it’s not included in our list. The truth is that research to this point has found that the digestive enzymes developed so far aren’t truly effective at degrading gluten. (4) There is further research being done though that will hopefully develop successful enzyme treatments, among others types of treatment, to help prevent the damaging effects of gluten. (5,6) For now, the best way to handle getting glutened is the simple steps above and giving yourself time.
How Long Will Healing from Gluten Exposure Take
The timeline for how long healing from gluten exposure will take is highly individual and dependent on a lot of factors. (7) It could be only a few days until you have no symptoms and only a few weeks for your intestine to have completely repaired itself. On the other hand, especially for diagnosed celiacs, symptoms can take months to subside, and it could be years before the intestine is truly healed.
That’s a little depressing to write. Here’s the good news: If you’re actively avoiding further exposure and taking steps to reduce inflammation and provide your body with the nutrients it needs to heal, you may be in better shape sooner than expected. For example, I am incredibly cautious about gluten exposure, even still I am certain I have had accidental exposures over the last few years. I didn’t have symptoms that lasted longer than day or two and I have annual checkups that show my antibody levels aren’t elevated. Zero antibodies, plus absence of the kinds of symptoms I had when my small intestine still showed severe blunting of the intestinal villi upon endoscopy, tells me that my intestine is healing quickly if there are accidental exposures.
There it is! The healing guide to gluten exposure! No sensationalized “gluten is no problem” approaches, but trustworthy info. We don’t want to stop here though because we’re really interested and we’re sure you are too. Let’s take the opportunity to conduct a little informal survey for the community. In the comments, please share with us:
- What autoimmune disease are you dealing with?
- What’s a “glutening” like for you?
- What are your tips for feeling better and how quickly do you typically recover?
We’re excited to keep learning about gluten and autoimmune disease! Thanks for sharing your experience.
References
- Visser J;Rozing J;Sapone A;Lammers K;Fasano A; (2009, May). Tight junctions, INTESTINAL PERMEABILITY, and autoimmunity: Celiac disease and type 1 Diabetes paradigms. Annals of the New York Academy of Sciences. Retrieved September 27, 2021, from https://pubmed.ncbi.nlm.nih.gov/19538307/.
- Ballantyne, D. S. (2020, April 26). How gluten (and OTHER Prolamins) damage the gut. The Paleo Mom. Retrieved September 27, 2021, from https://www.thepaleomom.com/how-gluten-and-other-prolamins-damage-the-gut/.
- Celiac disease SYMPTOMS: University of Chicago celiac Disease Center. University of Chicago Celiac Disease Center |. (2016, July 6). Retrieved September 27, 2021, from https://www.cureceliacdisease.org/symptoms/.
- Janssen, G., Christis, C., Kooy-Winkelaar, Y., Edens, L., Smith, D., Veelen, P. van, & Koning, F. (2015, June). Ineffective degradation of immunogenic gluten epitopes by currently available digestive enzyme supplements. PLOS ONE. Retrieved September 27, 2021, from https://journals.plos.org/plosone/article?id=10.1371%2Fjournal.pone.0128065.
- Segura, V., Ruiz-Carnicer, Á., Sousa, C., & Moreno, M. de. (2021). New insights into non-dietary treatment in celiac disease: Emerging therapeutic options. Nutrients, 13(7), 2146. https://doi.org/10.3390/nu13072146
- Wei, G., Helmerhorst, E. J., Darwish, G., Blumenkranz, G., & Schuppan, D. (2020, July 15). Gluten degrading enzymes for treatment of celiac disease. Nutrients. Retrieved September 27, 2021, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7400306/.
- Ballantyne, D. S. (2020, June 15). How long does it take the gut to repair after gluten exposure? The Paleo Mom. Retrieved September 27, 2021, from https://www.thepaleomom.com/how-long-does-it-take-the-gut-to-repair-after-gluten-exposure/.
24 comments
My stomach balloons up about an hour after eating and I have a strange heavy feeling in my gut. My mood and energy drop too but I’ve never been sure whether this is just due to being so gutted that it’s happened after trying to be so careful. It usually passes in a day or so. When it happens with dairy though it takes longer snd the gut symptoms are more severe. My autoimmune condition is Hashimotos. Thanks for this useful guide snd for all you do!
Thanks, Angi. While I don’t have celiac disease I am very sensitive to gluten. It took me ages to realize (in the reintroduction phase of AIP actually) that gluten ingestion leads to a depressed and irritable mood, low energy, and bloating. Who knew? What a relief to find out it was gluten.
Your suggestions are spot on. I also had to learn to stop beating myself up if I inadvertently ate gluten or slipped up. It only makes things worse, healing is hard enough.
Thanks so much,
Jean
Great point about not going on a guilt trip w/ ourselves, Jean. Thank you for sharing!
Haha! A “glutening”! I love that! The way you describe the whole circle of a glutening is perfect. Exactly as you said, my mom has memory issues and has said there were no breadcrumbs in meatballs and then said there were and then I had to get rid of them…(now I prepare everything myself to decrease stress for all!
The next part of the story you describe as well! Then I run to CVS for enzyme stuff and wasn’t even sure if helpful or necessary.
And I never had GI symptoms prior to discovering my Hashi + celiac situation like the 2/3rds of human you describe…so it’s hard for me to assess how bad it was or if it was. You are so speaking to every part of my story and how the “glutenings” go down. Tear-filled for me and also for my poor mom, she gets so mad at herself.
Good to know all nenzymes don’t have amazing evidence and doing the simple good things is the thing to focus on! Love this and thank you!
Thanks for sharing, Beth!
This is really helpful! I have hashis and likely celiacs, but I’m having trouble getting a definitive diagnosis because my gluten reactions are so severe I can’t tolerate the gluten challenge. Symptoms I get – constricted breathing/throat clearing, massive hair loss, crazy itchy rash, mouth ulcers, indescribable exhaustion, anxiety and depression. Although it’s hard to tell if the depression bit is related to the gluten itself or how miserable my other symptoms make me!
Ali, my experience is that the depression can totally be related to the gluten. Thank you for sharing & I hope your doctors will decide that your symptoms are powerful enough to help them make a clear diagnosis.
I just glutened myself the other day with a small piece of what I thought was a Sour Patch Kid, but what turned out to be a sour-patch-like licorice candy. My husband tried to get me to throw it up, which I did not want to do, and then failed to do (it was not pretty, especially since we were at a friend’s house!). I had urgent bathroom visits for three days, as usual, and I always seem to get fuzzy – Costco + gluten is a bad combo for me, because I walk around like a zombie, can’t make decisions, and get extra weepy about all of the things I will never be able to eat (looking at you, chocolate croissants…). My friends kept asking if there was anything they could do or go buy, but there’s just water. Thankfully, this doesn’t happen very often, and when it does, it is a good reminder that it’s called celiac DISEASE. I have a disease. I’m not being picky. I’m not on a fad diet. I have a disease that can only be managed with a very careful diet. It’s just so darn hard to be so darn careful every second of the day, even after 12 years of this! Sigh.
Allison, thank you for sharing and I totally feel you! Every second of every day for almost 10 years now. It’s a lot.
I’m 5mths newly diagnosed with hashimoto and learning gluten free life. Testing many things. And so far the glutening which I love that word, for me is being hit by a truck suddenly, major fatigue stuck, throat goes groggy. Depends on what I consumed whether or not I can get over it in a few hours or a day. I pound a lot of water, warm herbal teas give my throat relief and turmeric golden milk helps me. Why does gluten have to be in the most unusual things hah ugh.. I felt relieved reading I wasn’t crazy feeling that truck fatigue symptom. I’ll keep fighting the good fight as a hashimoto gf warrior.
Thanks for adding your experience, Reg!
Great article, Angie!
Thanks Christina!
I was diagnosed Hashimotos when I was 15 (I’m 45 now). I was around 35 when I started having serious reactions to gluten, it took a long time to pinpoint that that what was making me sick. I had a rash on my face for a year, I’d been to my Dr. and my Dermatologist, they’d take one look at me and say “Your reacting to something, start cutting things out!” Well since it was my skin I thought it was a product I was using. So I cut out lotions and make up, tried not to touch my face but nothing was helping. Then the stomach aches started, I walked around for 4-6 months with a stomach ache, and a belly that made me look about 5 months pregnant. I started getting canker sore’s in my mouth. When I finally went back to the doctor (again), I had no less then 20 canker sores in my mouth, they were going down my throat everything, it was awful. Well this time she put me on an elimination diet, and I remember thinking “this is going to be so restrictive, I’m going to feel terrible!”. But the opposite happened, after only 3 days on the diet the stomach ache I walked around with for months was gone, after a week ALL the sores in my mouth were completely gone. Then after I’d been GF for about 3 weeks I noticed the rash on my face that I’ve had for over a year GONE! Without medicine, it worked like magic. So many of my other crazy symptoms that I blew off to other things also cleared up. With Hashimotos, hair loss is common. My hair completely stopped falling out. It’s hard to be 100% GF all the time, but I do my best. When I do have Gluten it’s lots of water and time, seems works the best for me.
Wow! Melissa, that sounds like such a hard experience & I’m so glad you figured it out. Thanks for sharing how you approach things.
I have Autoimmune Metaplastic Atrophic Gastritis. My symptoms range from headaches, stomach pain, gas, bloating, nausea, and fuzzy memory. I was recently diagnosed but I have been dealing with symptoms for years. Since I am just beginning this journey, it is nice to see that there are caring people dealing with autoimmune diseases that share their experiences. As far as treatment for these symptoms, I eat soup and drink a lot of water until the symptoms subside. Thanks so much for all the information.
Connie, you are so welcome! This community is very supportive & we’re glad you found us w/ the new diagnosis.
Thank you for this article. I was diagnosed with Celiac Disease during 2018 and began AIP a few months afterwards, upon discovering this website. Through trial and error, I felt like I was doing pretty well and almost back to normal. I just experienced a glutening that was pretty rough a few days ago. I ended up vomiting for a couple of hours afterwards and felt lousy for the rest of the day. 4 days later, I’m still coping with symptoms. This article will help me recover quicker, so thank you so much!
Christine, so glad it helped! I hope you feel better soon.
I am currently laying in the hospital because of eating gluten. I had ordered a GF wrap at a local cafe which I have eaten before; but I was served a gluten wrap. I questioned this after I had eaten two bites. Within 1 1/2 hours I knew I was in trouble. Blurred vision, brain fog, numbness in arms, legs, down my eye, face and jaw. Very difficult to swallow, which raises panic for breathing. By the time I got to the ER I was loosing strength to walk and my right hand was curling in and losing strength. I have had blood tests and biopsies but the doctors say I do not have celiac. I have been GF for over 25 years. A year ago this happened as the doctor told me to eat 2 saltine crackers prior to a colonoscopy so they could do a biopsy ( which was negative) I ended up being taken to the hospital by ambulance because I passed out, similar numbness, went into shock and my body was jumping out of control; very frightening! But still no celiac diagnosis. I had one Dr. Tell me he thought I had neurological celiac; but he has left the practice and now I’m at square one! I think I have autoimmune issues and have done the AIP protocol but I remain severely bloated, constipated, and now severe reflux that I did know I had with concerns for my esophagus. Weary!!!
I’m so sorry to hear this harrowing story, Linda! I hope you heal quickly from this exposure, sending good thoughts!
I have Hashimoto’s, and a glutening for me has no symptoms at first exposure. If I keep eating wheat, though, by exposure three or four I’ll have a breakout of what I think is cystic acne (painful bumps under the skin, usually along the jawline) and I’ll get joint and muscle pain. My biggest reaction is mood swings and I can get really depressed (usually 24-48 hours after consumption). So sometimes it’s hard to say no to the donut because the reaction doesn’t feel that severe – – until I am really doing bad and can do nothing but cry hysterically! I do really well with outside forces telling me not to eat the stuff that I know will hurt me. I had a depressive episode recently and went to the doctor. She encouraged me to go completely gluten free again, and doctor’s orders really help me. I also asked my husband to stop asking if I ‘want’ a donut. I will ALWAYS want a donut! lol When I was single I controlled everything I ate, and I just didn’t go out to eat. My husband wasn’t used to that. After a couple years, he can see how the gluten affects me and he’s doing really well making sure that he doesn’t ask me if I want gluten, and encourages me to keep on the straight and narrow. (we never have gluten at home – we sometimes go out places where it’s really unappealing to find a gluten free choice – who wants to pay $15 for lettuce and a plain burger? …I am also nightshade, dairy and corn sensitive!) I find that the advice in this article is really good for recovery – hydration is key, I feel a lot better in recovery if I eat a LOT of veggies, and I find yoga and stretching helpful for stiff joints and muscles as well.
I am celiac and hasimotos. My Hashimotos was diagnosed first then I began having severe bloating. I checked for h. Pylori i took PPIs. I also started getting constipated like my guy completely turned off. Someone described it above as a heavy feeling in the gut. Now, after having an upper endoscopy they said my intestines looked like I had celiacs. We did the antibodies which elevated and then I went on a gluten free diet. It has been a difficult transition. I just didnt realize how much gluten was in everything. I have had my fair share of glutaccidents and it usually last about 2 days. My skin breaks out to on my face in what looks like seborrheic dermatitis. I now think I am reacting other foods as well. I am trying to do the AIP elimination phase right now but have still been eating a couple things I shouldnt such as white rice. It is so hard when you work all the time. I really like the insta gram and all the recipe ideas. Hoping if I can really stick to it I can keep my symptoms gone and lose some belly fat. Thanks everyone for sharing! Also, Mickey were you able to eliminate your tpo antibodies?
Oops didnt mean to post that direct to you but either way! Woh, please dont eat gluten!