Jump to content
  • Sign Up
  • Join Our Community!

    Do you have questions about celiac disease or the gluten-free diet?


How Bad Does It Get?

Rate this topic

Recommended Posts

Does it ever get so bad you feel like you're dying?

Right now I'm having:

-I can no longer feel, and can barely use my hands.

-Mood swings. Usually anger.

-Upper back hurts like it needs to be cracked.

-Stomach hurts.

-Ball in pit of stomach.


-Hard time focusing.

-Forgetting a lot.

-Sometimes my vision will completely blur

-Dizzy/losing balance

-Extremely irritable


It's really hard to funcion and I feel like I could just close my eyes and die if I wanted. I would go to a doctor's if I thought they could actually help.

Share this post

Link to post
Share on other sites

Pyro before I was diagnosed I was so bad that my DD told me the family would understand if I committed suicide. I was in so much mental and physical pain that at times I wished I was gone. I am so glad I am still here. Yes it can get bad but it can also get better. I do hope you will get on the diet as soon as you can. The world will seem such a different place. We are here for you and many of us have been in your shoes. Don't lose hope.


Share this post

Link to post
Share on other sites

It really helped me tremendously by taking some B-12 shots and later some sublingual (dissolved under your tongue) B-12. My memory, balance and focus improved quite a bit.

If you have not already done so, ask for a metabolic blood test which will show is you have any mineral or vitamin deficiencies. When your numbers are off, it can make you feel really bad and can make worse any depression you may have.

And please, make sure that you are totally gluten free and setting yourself up for traps. Gluten can hide everywhere.

It does get better with diligence and some time. We have all been there.

Share this post

Link to post
Share on other sites

Oh man... Here's what I posted on another board:

So after either burning out on amphetamine, burning out from exam anxiety, becoming malnourished from celiac disease, or some combination of the above I decided to take a week off from the gym and my diet. Instead of eating really healthy, I've just been focusing on getting lots of nutrients in from less savory sources and snacking on gluten free carbs to soothe my anxious soul.

Well now my stomach is horrificly distended and hurts, but not as bad as it hurts like when I'm glutened. So something else is up this time, but it ****ing SUUUUCKS! Dear lord it is not a nice thing to experience. And I'm retaining water like it's my job. darned... What should I do? I really don't know what to do now. It's really ballooning out and causing indirect discomfort.

Share this post

Link to post
Share on other sites

First take some pepto bismal, that may help a great deal. You mention snacking on lots of gluten free carbs that is not always a real good idea at first. For one thing many are loaded with things that your system may not be used to and some are high in other stuff that you may very well have a problem with. Especially in the early stages your gut is in pretty rough shape, you need to baby it.

For snacks go with fresh or for sure gluten-free tinned fruits, make up a bag with your favorite dried fruits, nuts and seeds like walnuts, almonds, pecans, sunflower seeds, pumpkin seeds etc. and add some gluten-free chocotale chips and maybe a few gluten-free pretzels.

You also may be not digesting dairy right now so make sure you are doing okay with it or cut it out altogether for a bit.

For meals go with plain fish, chicken, meats etc cooked, cooked veggies (your system may not handle too many raw right now, and rice.

It can take some time to heal and I know how hard it is at first when things are so up and down. Hang in there.

Share this post

Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

  • Top Posters +

  • Upcoming Events

    • March 24, 2019 Until March 27, 2019
      NEW ORLEANS GOURMET GLUTEN-FREE mini GETAWAY    March 24 ~ 27, 2019   We have arranged a fun and Gluten-free food filled mini in the city known for it's food and fun.  We have arranged to eat many of the famous dishes that aren't usually Gluten-free at a few of the World Renown restaurants.   Staying at the Royal Sonesta Hotel on Bourbon Street in the center of the French Quarter, you'll be able to enjoy the ambiance of the city at all hours.   Our itinerary will include a Luxury Coach tour of the city and surrounding area - Admission to The National World War II Museum, including the Tom Hanks" 4D film "Beyond All Boundaries" - an exciting Airboat ride and tour through the Bayou.      This it the 3rd time we have visited New Orleans and it has always been well attended, so join us even if you've been there before.  Check out our website for the complete itinerary and cost.    Due to contractual obligations we must have 20 participants by October 31, 2018 to make this a go.      If you have any questions just give us a call at 410-939-3218.  Bob & Ruth info@bobandruths.com (410) 939-3218
    • March 27, 2019 04:00 PM Until 08:00 AM
      Celiac Emotional Healing Support Group
      Again you are invited to join Johnny Patout, LCSW for Baton Rouge's first emotional healing support group meeting to assist those living with celiac disease manage the emotional challenges so many of us face. Most often the emotional disturbances include depression, disinterest in normal activities, insomnia, grief, mood changes, anxiety, inability to concentrate, extreme concern about managing a gluten-free lifestyle and other emotional and behavioral challenges.
      The professionals at Jamestown Avenue Counseling Center created the emotional healing support group to give us a safe place to begin to process our emotions and support each other as we heal emotionally while managing celiac disease and the resulting autoimmune disorders.
      The emotional healing support group meets every Thursday, 6:00-7:00pm, at the Jamestown Avenue Counseling Center of Baton Rouge. Jamestown Avenue Counseling Center is located at 4637 Jamestown Avenue, Baton Rouge, Suite B-1. Suite B-1 is upstairs.
      The support group is free and open everyone managing celiac disease. For more information: emotionalhealingforceliacs@hotmail.com
    • March 30, 2019 Until March 31, 2019
      Nourished Festival is a family-friendly event with 10 locations across the US. Attendees will be able to sample food, health and beauty products, meet with companies, learn about the most current food lifestyles, receive coupons and attend educational sessions with industry experts. 
      Nourished Festival, managed by The Nourished Group and presented by Enjoy Life Foods, is the largest gluten-free, allergy-friendly and specialty diet event in the US, with 10 locations including.
      Managed by The Nourished Group, formerly The Gluten Free Media Group, The Nourished Festivals are the largest and fastest growing special diet consumer events in the United States. Started in 2007, the events have expanded from one to ten cities throughout the country. The festivals cater to anyone looking to lead a healthier lifestyle or those who follow a specialty diet due to autoimmune conditions, food sensitivities, allergies or intolerances. Offerings including Paleo, Keto, Plant-Based, Gluten-Free, Allergen-Friendly and Nut-Free products. The events provide the opportunity for attendees to sample and purchase new products, receive coupons, meet with brand ambassadors and attend educational classes with industry experts. For more information, visit http://www.nourishedfestival.com 
@Alaskaguy With regard to the timing, I think that everyone is a bit different! I used to have a shorter time to onset when I was first diagnosed (within 24h). As time has gone on, and I've glutened myself less and less, I have noticed that the time gets a bit longer.  Recent history seems to matter a bit too - if I've been glutened recently and then get glutened again, the rash will show up faster on the second round. For example, in the last 3 weeks I got slightly glutened by inadvertent
  • Blog Entries

  • ×
    • Create New...