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Looking To Meet People Who Have Been Bed Ridden From Celiac


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20 replies to this topic

#1 MissBonnie

 
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Posted 19 May 2011 - 05:00 PM

i am having a hard time seeeing the light at the end of this very dark tunnel. i was in hospital 2 months ago before being diagnosed with celiac. since being on the diet i have gotten so much better but still spend some days in bed. my current situation is that im in so much pain lately that ive been in bed for 2 weeks :(
has anyone had such severe symptoms like this? please share your stories with me!
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#2 GlutenFreeManna

 
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Posted 19 May 2011 - 05:34 PM

Hi,

I have been gluten free for 1 year 5 months. Before going gluten free I was bedridden with pain. I also had unexplained seizures/faintign and I was ordered not to drive by my dr. At least a year of my life is a blur in my memory because about all I did was sleep or stay in bed in pain. My hair was failing out, I had dark circles around my eyes despite sleeping most of the day, my hands shook, My muscles spasmed and my joints hurt, I could not keep any food down (probably because I was eating mostly saltines and toast prior to gluten-free). It does get better. For me I had to give up dairy and soy as well. Be sure you have all your vitamin levels checked and that you are at least taking a good gluten-free mulit-vitamin. I started being able to do some housework again (dishes and laundry) at around 6 months. I am now back to doing everythign I did before (including driving) except for reading for long periods and walking long distances. I exercise every day, however, for 30 minutes on a treadmill. Something that was impossible for me a year ago. I'm still getting stronger everyday. My dr wants me to ideally be able to do 60 minutes of exercise per day but I am not strong enough for that yet. My memory is still bad at times. I'm taking B12 to try to improve it so I can go back to grad school. Just take it one day at a time and know that you will steadily improve if you are diligent about staying 100% gluten-free, eating healthy (mostly natural gluten-free foods like fruits, veggies and meats) and taking your vitamins. Give the gluten-free diet a few months and if your pain does not improve you might want to look into additional food intolerances. The most common ones on this board seem to be dairy, soy, other grains (like corn or rice), nightshades and fructose.
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A simple meal with love is better than a feast where there is hatred. Proverbs 15:17 (CEV)

#3 MissBonnie

 
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Posted 19 May 2011 - 05:46 PM

wow thanks so much for sharing your story! it gives me hope that someone like you can go through that and come out being able to exercise and have no pain. i think i have a corn allergy so i avoid that, and im also about to trial a lactose free diet to see if the pain goes away at all. its so frustrating trying to figure all this out but i guess i will get there..
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#4 mushroom

 
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Posted 19 May 2011 - 06:07 PM

im also about to trial a lactose free diet to see if the pain goes away at all. its so frustrating trying to figure all this out but i guess i will get there..


Yes, the lactose is the first thing to take out, right away!!!. Most gluten intolerant people cannot digest lactose until their gut heals.

Perhaps if you do a little reading in other people's threads you will see that we have to remove lots of things at first.....
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#5 GlutenFreeManna

 
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Posted 19 May 2011 - 06:32 PM

wow thanks so much for sharing your story! it gives me hope that someone like you can go through that and come out being able to exercise and have no pain. i think i have a corn allergy so i avoid that, and im also about to trial a lactose free diet to see if the pain goes away at all. its so frustrating trying to figure all this out but i guess i will get there..


You're welcome! Welcome to the board! I am not 100% pain free but I would say proably 95%. I hurt after exercising even with stretching but I am really pushing myself to do more and more. I have been slowly regaining my muscle and that is what hurts. I was so weak before. I know some people on the board that were bedridden went through physical therapy. I was not able to afford anything like that without a formal diagnosis so I have just been doing this on my own with dr's guidance on what to do for exercise. I started out walking to the mailbox and then around the grocery stores while leaning on a shopping cart. I would try to just go a little further each day until I could walk around the store without leaning on the cart. Then I started walking to the grocery store every three days (I live about two blocks from one), then every other day. When I was able to do every other day without being too tired I started walking on the treadmill with a friend (this was in January of this year). So it was a gradual process. Make small goals for yourself each day and then when you can do those goals without difficulty add something else.
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A simple meal with love is better than a feast where there is hatred. Proverbs 15:17 (CEV)

#6 MissBonnie

 
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Posted 19 May 2011 - 06:45 PM

the problem i have is that one day ill be 80% perfect and the next ill be bedridden for 2 weeks again. its a rollarcoaster and i think depends alot on what im eating. its very hard some days :(
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#7 GlutenFreeManna

 
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Posted 19 May 2011 - 07:02 PM

the problem i have is that one day ill be 80% perfect and the next ill be bedridden for 2 weeks again. its a rollarcoaster and i think depends alot on what im eating. its very hard some days :(


It sounds like you are still getting some accidental gluten somewhere. If I get even a little gluten I am down for at least a week (longer if it is a large amount). What are you typically eating? have you taken all the needed precautions to eliminate cc at home? Like having a dedicated toaster, new cutting boards, new wooden spoons, new colander, etc?
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A simple meal with love is better than a feast where there is hatred. Proverbs 15:17 (CEV)

#8 MissBonnie

 
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Posted 19 May 2011 - 07:10 PM

i have now but i think that may have been the problem. im in pain from about 16 days ago. it just seems never ending. today i have nausea aswell i dont understand what im doing so wrong. im basically livng on veggies and eggs. i had an allergy test and im fine with everything im eating so i dont get it
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#9 GlutenFreeManna

 
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Posted 19 May 2011 - 07:29 PM

i have now but i think that may have been the problem. im in pain from about 16 days ago. it just seems never ending. today i have nausea aswell i dont understand what im doing so wrong. im basically livng on veggies and eggs. i had an allergy test and im fine with everything im eating so i dont get it


You might want to add some carbs to that. How about some rice or sweet potatoes? Rice cakes with peanut butter usually agree with my stomach when I'm feeling nauseus. I know for me I find just eating protein or veggies alone makes me a little queasy, but when I pair them with some rice or something I feel better. Everyone is different however. Be sure that you are eating enough calories.

Also consider that it is possible to be intolerant of something and not really allergic. Intolerances (like lactose intolerance) would not show up on allergy testing. Some allergies do not show up as well (due to false negatives). I just started having an anaphylactic reaction to milk, however my IgE milk allergy tests came back negative (both blood and skin prick). The allergist told me since milk makes my throat swell shut to continue to avoid it.
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A simple meal with love is better than a feast where there is hatred. Proverbs 15:17 (CEV)

#10 mushroom

 
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Posted 19 May 2011 - 07:32 PM

Well, basically you are trying to digest food with a gut that has been damaged by gluten. So it is going to have a really hard time at first and you have to be kind to it. Do not eat raw, uncooked, veggies and fruits. Do not eat the skins on things like apples, pears, tomatoes, broccoli stems. Baby your stomach and pretend you are a baby eating baby foods. Be as kind to your tummy as you can and it will thank you. Eat applesauce instead of raw apples. Mash things up as this will get the digestive process started and expose the most surface area of the food to digestive enzymes.

Take probiotics that are gluten and lactose free to help heal your gut. Try some digestive enzymes to help digest your food since the gluten may have sent your pancreas on vacation to the Bahamas for a while (or even to the Mediterranean :D ). Make things as easy for it as you possibly can, and eat a limited diet at first (as you seem to know to do) so you can figure out what is bothering you.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#11 eatmeat4good

 
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Posted 19 May 2011 - 08:44 PM

I was bed ridden for 5 years...sick for 7 but functioned the first 2 years trying to figure out what was wrong until I got seriously ill and couldn't get out of bed. Headaches, migraines, nausea, vomiting, D, fatigue, slept away whole years being ill...all the dr's would say was fibromylagia...but it wasn't.

I am only 7 months gluten free and I couldn't even walk across the street when I started this diet. I was weak and sick. Then the headaches went away and the pain lessened. Now I drive, walk, work, and function as a normal human being albeit with post traumatic stress disorder from living in lala land for so long. I was eating crackers for the nausea and taking meds for nausea too. It was wheat huh? wow!

Be very careful of cross contamination. If I get any accidental ingestion, I end up with muscle pain, weakness, fatigue, anxiety and depression as if none of it ever went away. It is bizarre and scary. But if I eat clean I am fine. Muscles are returning and I have lost a massive amount of inflammatory weight. That is what I call it because I certainly didn't gain that weight from eating...it was fluid retention and inflammation. I hardly ate at all for several years except nibbles here and there. Now I eat normal meals.

I had to give up eggs. At first they were my main food, like you. But I realized they were bothering me and now whenever I test them, I know I can't eat them. I feel lousy, my face swells, I feel bad. So I quit eggs. Then dairy, then soy, now working on nightshades. They all have negative effects on me. I wanna feel good. I do feel good if I eat mostly meat with some cooked veggies and minimal fruit. Way more restictive than I wanted to be. Thought gluten was bad enough, but it is all the other stuff too. I don't handle carbs well at all. Protein is most easily digested for me.

I am feeling better mentally and physically than I have in years...and no one would ever believe I spent most of the last 7 years in bed, sleeping, or with a headache. You can do it. It does take time, but I know you can get your strength back if I did. I'm not all the way there...still have good days and bad. Learning where gluten is and what got you is a big part of living gluten free. I only eat things with peelings and meat. Other than the occasional Snickers for a treat. I'm safer that way. Can't afford to be sick for days due to food mistakes.

Just want you to know it can be done. This diagnosis eluded me for years. I'm thrilled to be given a second chance at life. You must figure out what foods you are intolerant of besides gluten and you must figure out where the trace gluten is hiding...and then the healing takes place.

Hope your healing goes fast and that you feel better soon.
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Healing is a matter of time, but it is sometimes also a matter of opportunity.
--Hippocrates

#12 MissBonnie

 
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Posted 19 May 2011 - 08:49 PM

ive been taking a probiotic and im also on aloe vera and glutamine casules. im just so imptient and frustrated with my body :(
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#13 MissBonnie

 
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Posted 19 May 2011 - 10:38 PM

wow 7 years! im so sorry you had to go through that. so after 7 months you are doing well? thats fantastic!
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#14 thleensd

 
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Posted 20 May 2011 - 10:02 PM

Hang in there. It's been two years since diagnosis for me. When I was at my worst I needed help eating and getting up to use the restroom.

As I progressed, there were little milestones... I could wash my own hair. I could take a shower without a nap afterwards. I could walk down the street. Then around the block. I'm not 100% yet... maybe 50 or 60, but I love the good days (hours, minutes).

Like eatmeat said, many (most?) people need to figure out what works for them in addition to gluten-free. I'm learning to pace myself. Not something I do naturally!

Patience is hard. I struggle with it daily, but I'm getting better. Acceptance without giving up the fight to get better is a fine line to walk, but keep at it. I've found reading and sharing stories here to be very helpful in my healing.

Best.
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Diagnosed 2/12/09 by biopsy after years of anemia, neuropathy, dizziness, brain fog, pain and more.
Negative blood tests (following gluten light diet)

Still healing with time, harmony, and good food.
Grain-free 1/11/11

Blogging Gluten-Free

#15 MissBonnie

 
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Posted 20 May 2011 - 10:09 PM

Hang in there. It's been two years since diagnosis for me. When I was at my worst I needed help eating and getting up to use the restroom.

As I progressed, there were little milestones... I could wash my own hair. I could take a shower without a nap afterwards. I could walk down the street. Then around the block. I'm not 100% yet... maybe 50 or 60, but I love the good days (hours, minutes).

Like eatmeat said, many (most?) people need to figure out what works for them in addition to gluten-free. I'm learning to pace myself. Not something I do naturally!

Patience is hard. I struggle with it daily, but I'm getting better. Acceptance without giving up the fight to get better is a fine line to walk, but keep at it. I've found reading and sharing stories here to be very helpful in my healing.

Best.


you're right its a very fine line. and wow 2 years is a very long time. i hope you fully recover very soon! well done for your positive attitude. this site has been great i agree. it fills my day a little more instead of being upset and alone sometimes
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