Jump to content
Celiac Disease FAQ | This site uses cookies GDPR notice. Read more... ×
  • Sign Up
0
MissBonnie

Recovery Is So Up And Down. Anyone Else Struggle With This?

Rate this topic

Recommended Posts

i was hospitalized 4 months ago and this is how i found out im celiac. since then i have good days and bad. i just wonder when the bad days will go and i will have only good days. has anyone else been sick for this long? and if so what was the recovery like? im getting really depressed being tied to my bed constantly. any positive thoughts or encouragment would be much appreciated thanks. im 22 if that helps anyone

Share this post


Link to post
Share on other sites

i have also had ups and downs since my diagnosis several months ago. i think part of the problem for me is they keep finding other intolerances and allergies, so i cannot figure out what to eat. it is made worse by not having clear reactions where i can connect symptoms to problem foods. i am still in the recovery and healing process so your question is one of mine too. fortunately, i have not been so sick to be tied to my bed, but in some ways at least then people might understand i am sick versus now i look fine but feel anything but fine. i am also in my twenties. at least we are younger when we got diagnosed i think that should help in our healing and we will have many years to enjoy this knowledge and make choices for health instead of unknowingly eating something that is harming us. best wishes!

Share this post


Link to post
Share on other sites

Unfortunately, the journey is different for all of us. It took 18 months on a VERY strict gluten-free diet for me to feel "better." However, cross-contamination occurred from time to time, which caused me to have to receive intravenous iron on a weekly basis (which I have since overcome), receive B12 shots (still getting), and suffer numerous setbacks (e.g., two fractured feet from deficiencies that caused problems with my tendons and ligaments, breast cancer, etc.). Everyone heals at a different rate, and there can definitely be ups and downs because of cross-contamination, so all you can do is try your best to adhere to the diet. Even so, it will take time to heal....

Share this post


Link to post
Share on other sites

Hi miss Bonnie. You may recall that I am 14 months gluten-free and am still having abdominal pain, morning nausea and fatigue. I haven't stopped trying to find out what else is wrong with me, in addition to Coeliac. Last week I saw a new gastroenterologist and he suggested I may have IBS and fibromyalgia.

I suggest that you look for other food intolerances, visit other specialists and keep searching. I am sitting in a room having a breath test today-to see if I have SIBO and last week I had heaps of blood tests. My Dr said that not to place too much hope on a diagnosis since some autoimmune diseases don't show up on blood tests for years.

I am really sorry you feel so bad. Don't give up - keep hassling your Drs to keep an eye on your vit and mineral levels. In the meantime keep up your healthy gluten-free diet. Perhaps keep a food diary?

Thanks for your post. Please let us know how your recovery goes.

Share this post


Link to post
Share on other sites

hi miss bonnie, i've been wondering about you since i read a previous post. i don't want to say anything that seems to disregard how tough the day to day can be. it sounds hard. please try to hang in there!

i do want to say, try to infuse your day with things that you love and enjoy and make you laugh. laughter is good medicine as they say.... give yourself some small things.....flowers, sketching, looking at beautiful art in books...or whatever it is you love. things that elevate the spirit. do something that is gratifying. doing something small but nice for someone else can help you be 'away' from your struggles for a small amount of time. maybe writing letters for Amnesty International or some other nonprofit/charity group who needs many, small actions. these could be done at your own pace while resting at home.

where i live, there are a lot of mountain bikers and i like one of their analogies for staying on the course and not wiping out, "look where you want to go". it's incredibly simple....but reminds one to pay attention and focused in order to not get distracted and stay in control (of what can be controlled). Maybe we can remain focused on those things that keep us in better spirits, in between the bouts of YUCK!

all the best to you! hang in there!

Share this post


Link to post
Share on other sites

It took me a long time too. I had to be on a very gluten free diet too. You might be a super sensitive celiac like I am. Keep a journal of what you eat and how you feel. That can help you figure out cross contamination problems and possible food allergies.

Are you using a kitchen shared with gluten eaters? Can you make your own kitchen with a dorm fridge and microwave? Can you cut out processed foods and stick to produce and meat?

I hope you feel better soon.

Share this post


Link to post
Share on other sites

thank you for all the replys. its just hard when you're literally stuck in bed from nausea every sinngle day and if you get a day without it then you have unbearable pain or headaches from stretching your neck in bed. it sucks thats all there is to it. if i didnt have yoiu guys on here id be completely alone. i cant do this anymore. im fed up. :( having a bad day...

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
0

  • Top Posters +

  • Upcoming Events

    • February 27, 2019 04:00 PM Until 08:00 AM
      0  
       
       
       
      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 24, 2019 Until March 27, 2019
      0  
      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 30, 2019 Until March 31, 2019
      0  
      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.
      ABOUT THE NOURISHED FESTIVALS
      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 
       
  • Member Statistics

    • Total Members
      86,544
    • Most Online
      4,125

    Newest Member
    AlyssaAnn22
    Joined
  • Forum Statistics

    • Total Topics
      111,815
    • Total Posts
      955,908
  • Who's Online (See full list)

  • Forum Discussions

    Thank you GFinDC. Question. When you say, "quick rinse", can you define what is safe for us to use when washing our fruits and veggies? I know that might sound like something I should know but I am seriously taking no chances (at least not on purpose). I've been buying organic produce because I was told I needed to. Do you find that to be true or do I need to find a new nutritionist? 😉
    Hi Wade, You areright, there are lots of little gotchas out there in the gluten-filled world.  That's why it is easier/safer to stick with whole foods at the beginning of the gluten-free diet.  The list of ingredients on an apple or an orange or a steak is usually real short.  So you can get out of the grocery store quicker by eating whole foods like those.  Plain frozen veggies or canned are usually safe too.  And fresh produce as long as you give it a quick rinse.
    Why....why would your doctor not follow the standard of care for testing celiac disease?  I think you need to think about  finding another doctor.  If you are in the US, you can “walk” into a lab and order the test and pay cash: https://labtestsonline.org/tests/celiac-disease-antibody-tests No, your result does not significantly lower your odds of getting a celiac disease diagnosis.  She ordered the LEAST commonly used test, especially since she only ordered that one alone.  I think she thinks you do not have celiac disease, but that you may have a gluten sensitivity.  But that is wrong!  There is no test for gluten sensitivity.  http://www.cureceliacdisease.org/screening/ https://www.mayocliniclabs.com/it-mmfiles/Celiac_Disease_Diagnostic_Testing_Algorithm.pdf https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/ https://www.verywellhealth.com/celiac-disease-blood-tests-562694 https://www.niddk.nih.gov/health-information/diagnostic-tests/celiac-disease-health-care-professionals I am not a doctor though.  Perhaps, you can ask her why she did not order the complete panel or at least the screening tests most often ordered for celiac disease. Know that some celiacs are asymptomatic (no symptoms) Some just have one symptom.  Some have classic symptoms.  I presented with only anemia and no GI symptoms with only a positive on the DGP IgA.    I hope this helps.  
  • Blog Entries

  • Blog Statistics

    • Total Blogs
      1,158
    • Total Entries
      2,010
×