Part 2: Your Voice!

Your Voice

In honor of May being Celiac Awareness Month, rather than me just share my experiences living with the disease… I want to hear from YOU! Each week last month I asked a different question about living with celiac disease and the responses I got were incredible! It makes me so proud to be a part of such a strong community and really helps me believe that I’m not alone in this struggle!

If you missed last week’s post, be sure to read everyone’s responses to “the challenges living with celiac” here!

The next topic of discussion was:

“When I get glutened, the one thing that helps most is _____.”

I received so many great, helpful responses! I did a post on this topic a while ago with my 10 helpful tips for gluten recovery. You can read my thoughts here! 

 

Now on to your responses!

(I’m keeping all answers anonymous to respect everyones privacy)

  • Time+papaya enzymes
  • Water, water, water, my go to clean meal of grilled chicken, steamed broccoli and mighty rice. And then I drink water.
  • Lots of rest, water, and beef broth from our favorite pho restaurant.
  • Activated charcoal, water, fasting, sleep.
  • Charcoal pills, lots of water, hot water bottle, Epsom salt bath, beef broth ..and prayers…
  • Sleep! Plus water, coconut water, enzymes, Bio K probiotic, apple cider vinegar (I just take it like a shot), and broth. It’s all about purging & cleansing the system. It still takes 12-36 hours, but you do what you can.
  • Time. Water. Rest.
  • Baby wipes! Taking GlutenFlam (supplement that helps reduce the damage and inflammation if you take it ASAP); Upping the probiotics, vitamins C, D3, Zinc, liquid B12, and magnesium; Boiron’s Arsenicum Album – homeopathic pellets for symptoms of food poisoning; icing my abdomen; sleep; Alo brand Aloe Vera drink (the watermelon/ peach variety); Turmeric; chlorophyll; Traditional Medicinals Chamomile and lavender tea; Pepto Bismal caplets; bone broth and easily digested meals and ta GF version of the BRAT diet to slow things down (Bananas, Rice, Applesauce, Toast); Orgain’s vegan protein shake – the ready to go or powder mix; ginger and ginger ale; and finding something to watch or read that can make me laugh and take my mind off the pain. I’m SUPER sensitive and once glutened, easily get any flu bug or virus that I get exposed to when I’m in that vulnerable state. I literally will try anything safe for me, to feel better and heal! The symptoms last a minimum of three weeks for me!
  • An understanding husband that gives me a bucket and lots of space!
  • When I have gluten accidentally get into my diet, it not only gives me hundreds of tiny blisters on my palms and fingers that burst and then peels ( a total of 3 weeks to heal) but it creates havoc in my GI track , after 2 days it’s so very painful to have a bowel (because of the diarrhea , I have a prolapse rectum )that when anything passes I must immediately get into a scolding hot bathtub, it’s an instant relief and I only need to be there maybe 5 minutes but on bad days it’s as many as 10 times, now that I understand what causes it I can keep it from getting that bad. ( a dermatologist diagnosed it after seeing GI Dr’s for 8 yrs, 4 colon scopes and even blood transfusions because I was bleeding so bad from my rectum and when the blisters made my hands so raw, my whole problem was GLUTEN ) I’m finally on my way to feeling better !
  • I take Alka Seltzer Gold and lie down. I try to get as much rest as possible. I drink more water than usual over the course of the next few days. I try to avoid my family so my mood swings don’t get inflicted on them. I also try to figure out what I ate that might have done it, so I don’t do it again. Mostly I try to avoid eating out because being glutened is hell. If it happens at home, that’s harder to track down since for the most part we are gluten free at home. Recently I was having a lot of problems, and I figured out that it was the bird seeds for our pets. I try to be scrupulously careful washing my hands after I feed them, but if I get distracted, it doesn’t happen, and the probability of getting glutened goes up. It’s so easy to forget and then eat before I’ve washed my hands. I put post it notes on the food buckets and in the bathroom so I remember to wash my hands thoroughly. It helps me to remember that it isn’t always what I eat that affects me. What I touch can be just as bad. Ugh!
  • Nothing will take the pain & suffering away, but I’ve found I can lessen it by taking activated charcoal & digestive enzymes. And I use essential oils topically on my abdomen also.
  • When I get glutened, the one thing that helps me most is anything to control the nausea. Peppermint, ginger, nausea medications. Everything else I can’t really do anything about but the nausea I can at least minimise… a little!
  • Chicken broth, L-Glutamine and Probiotics….
  • Rest, lots of water and patience. Sometimes it can take weeks to feel better!
  • Bone broth, activated charcoal and epsom salt baths.
  • Lots and lots of water. Eat bland for a few days and avoid dairy for a few weeks.
  • Rest and bone broth. Explain to family that you’re not yourself while recovering… emotions get crazy! It’s okay, it’s not you it’s from getting sick.
  • Activated charcoal and sleep. Lots of sleep.
  • Bone broth and rest. Just give it time to pass.
  • Essential oils, lots of water and sleep.
  • Listen to your body. Rest, and don’t feel guilty about calling out sick from work or checking out at home until you feel better. Sleep heals.
  • Time. Drink water, bone broth and sleep!
  • Follow the BRATs diet for a while and lots of water.
  • Sleep!
  • Epsom salt baths, essential oils topically on stomach, lots of water and rest.
  • Nothing really makes you heal faster, just be patient and let it pass.
  • Mint tea, bone broth and lots of water.
  • Sleep, sleep and more sleep!
  • Activated charcoal!!
  • Bone broth, eat simple foods with no seasonings, no dairy, and lots of sleep.
  • A supportive, loving family helps a great deal! Water, rest and trying to stay positive because that can be a challenge.
  • Warm baths, lots of water and sleep.
  • Heating pad, lots of water, rest and prayers.
  • Essential oils (I use doTERRA’s DigestZen) on stomach and lots of water. You have to flush it out.
  • Sleep and essential oils! There are so many symptoms and every time is different but oils have helped a lot like nothing else.
  • The things that help me most is peppermint tea, fennel tea, coconut water, gatorade, bone broth, epsom salt baths, heating pad on the stomach. Rest and fluids.
  • Being home. Having a job that requires tons of travelling – too many restaurants that don’t understand the severity of a mistake can take an immense toll on ones health. Being home after an exposure is the step to getting back to life. Sadly it can take a couple of weeks!
  • Activated charcoal is a lifesaver!
  • Water! A walk if I can manage it. A lot of my symptoms are head related so sleep and slowing down. Being kind to myself that it’s okay to just not have the energy and that it will pass….
  • Water and charcoal here too.
  • When I get glutened I have a migraine headache and vomit for hours. I can barely keep any water down let alone food. The thing that helps me most is Ginger tea and bed rest for a day.
  • Activated charcoal & cardamom essential oil.
  • My daughter and I both get serious stomach cramps that stop instantly when peppermint oil with coconut or lotion mixed with it is applied to our bellies.
  • Sleep, ginger tea and L-glutamine.
  • Sleep, bone broth, mint tea.
  • resting! The brain fog and exhaustion I feel when glutened are absurd. I’ve learned that the best thing I can do for myself is rest and do all I can to not get upset over how tired I am.
  • knowing that this too will pass. I have not found a way to lessen the effects of an accidental gluten exposure. If I suspect that I have been “glutened” I try to eat only foods that I know should not be cross contaminated (e.g. eggs, rice, bananas, etc.) or are certified gluten free. I have discovered (or suspected) that even foods that say gluten free on the label or should be gluten free must have been cross contaminated because of the effects they have had on me.
  • My heating pad and rest/sleep
  • things that help me when I get glutted are…laying down in a dimly lite room with a cold compress on my head and my legs elevated for any stomach issues.
  • coconut water and fresh air.

After reading though everyone’s responses, it made me realize many of you recommend the same types of things. It appears that liquids, sleep and activated charcoal (I’ve personally never tried activated charcoal but it was mentioned a lot!) are the most recommend tips!

This is a topic I asked my doctor when first diagnosed and people often ask at the celiac conference I attend each year. From my experiences, most of the time doctors just recommend allowing time to pass in order to feel better. I love that all of you with celiac/gluten senstivity shared REAL tips that help make you feel better!

*As always, I’m not a medical professional so please always consult with your doctor. 

Thank you SO much to everyone who shared tips on this topic and stay tuned for parts 3 & 4 throughout the month!

 

 

14 comments

  1. Patricia says:

    I’ve just been diagnosed but have lived with this disease for 25-30 years. I’ve suffered a lot with the stomach pain and diarrhea. In January before my diagnosis the puking started and I was sick most of the month. Thank God I found a new doctor who listened to me and helped me find answers. I’ve been gluten free for about 6weeks now and am feeling so much better. I’ve lost 14 pounds and a lot of things I was diagnosed with have cleared up. I’ve been reading everything I can about this disease. I’ve cleaned out my kitchen of gluten and have read labels and was amazed at how much stuff had gluten in it. I’m still learning and the only place I’ve gone out to eat is Chick-fil-a I’ve researched it and checked that they fry chicken separate from there fries and keep everything separate. I’ve found some stores that carry a lot of gluten free items. I’ve bought some different kinds of flours but haven’t tried baking any bread yet. Just sticking to the basics of Whole Foods and meats. I’ve enjoyed reading all the different posts and have learned a lot

    • msmodify says:

      Hi Patricia! Wow! 25-30 years!? Although I’m sure this has been a hard transition for you, what a blessing that you finally have an answer and are on the road to recovery! Feel free to email me (kristina@msmodify.com) if you need additional support/resources!

  2. Jade says:

    Lots of people mentioned essential oils. Other than peppermint oil which was mentioned a few times, which ones do you guys suggest?

  3. Adrienne says:

    I add pure aloe vera juice to my water throughout the day. And I drink half my body weight in ounces of water. (If you weigh 200 lbs, drink 100 oz of water daily). Aloe soothes digestive issues and increases vitamin/mineral uptake from food and supplements.
    I take Enzymedica’s digestive enzymes with EVERY meal/snack. I will take additional if I find I have been glutened. Glucoamylase helps break down gluten and I believe most all of their products contain that specific enzyme.
    Peppermint and lavender essential oil for headaches.
    And lots of rest!!

  4. Jan-Erik Swart says:

    Hi All! I’m a Celiac/Type 1 Diabetic /Crohns male school teacher from South Africa who regularly gets glutinized from restaurants. In South Africa, Celiac Disease is not considered serious because “it’s all in the mind.”

    I use Curcumin capsules to reduce inflammation, and add Probiotics, bone broth, fibre pellets and a pill called Bevispas to relieve pain.

    I find medical doctors clueless as to my condition, and have been blamed for being a ‘lazy’ teacher because of chronic exhaustion, hospitalization and long recovery periods.

    Yet I offer highly professional education and do not accept ignorant judgments of who I am.

  5. Damaris Rojas says:

    “Mastic Gum” pills will help heal your stomach so that the effects are not as bad. This has helped me some 🙂
    I need to add “Curcumin” to my regimen. Nice hot shower can help if you dont have time for a bath. I take CBD pills.
    Sometimes I take them daily so that I can sleep, otherwise my stomach pains dont allow me to sleep. Look for pure CBD extract, it has been a life saver 🙂

  6. Becky Mortensen says:

    I use Maylox for intestinal systems and cramping, my Natural Path has me taking Deglycyrrhizinated Licorice Extract. Drink lots of water and sleep.

  7. Toilet Bound says:

    I kept not getting better, only to one day realize there can be gluten in your toothpaste. ARE YOU SERIOUS?! Cut that out and now life and the things I’m doing make more sense. If your not getting better, there is probably a hidden source you haven’t linked yet, and it’s going to be something you never thought could ever have it.

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