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

MissBonnie

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MissBonnie Apprentice
MissBonnie
Posted

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

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viviendoparajesus Apprentice
viviendoparajesus
Posted

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!

rosetapper23 Explorer
rosetapper23
Posted

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....

Kim69 Apprentice
Kim69
Posted

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.

ladymiss Rookie
ladymiss
Posted

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!

dilettantesteph Collaborator
dilettantesteph
Posted

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.

MissBonnie Apprentice
MissBonnie
Posted
  • Author

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...

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      By Colleen H · Posted

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    • trents
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      By trents · Posted

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    • trents
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      By trents · Posted

      If you were off gluten for two months that would have been long enough to invalidate the celiac blood antibody testing. Many people make the same mistake. They experiment with the gluten free diet before seeking formal testing. Once you remove gluten from the diet the antibodies stop being produced and those that are already in circulation begin to be removed and often drop below detectable levels. To pursue valid testing for celiac disease you would need to resume gluten consumption equivalent to the amount found in 4-6 slices of wheat bread daily for at least two weeks, preferably longer. These are the most recent guidelines for the "gluten challenge". Without formal testing there is no way to distinguish between celiac disease and gluten sensitivity since their symptoms overlap. However, celiac disease is an autoimmune disorder that damages the small bowel lining, not true of gluten sensitivity. There is no test available for gluten sensitivity so celiac disease must first be ruled out. By the way, elevated liver enzymes was what led to my celiac diagnosis almost 25 years ago.
    • trents
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      By trents · Posted

      Then it does not seem to me that a gluten-related disorder is at the heart of your problems, unless that is, you have refractory celiac disease. But you did not answer my question about how long you had been eating gluten free before you had the blood antibody test for celiac disease done.
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