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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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    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

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    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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