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6 Months Gluten Free And Still Sick

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ok so im 23 and it all started this time last year when i started to feel tired and generally unwell. i got progressively worse to the point where i had such bad dizzy spells i almost had a car accident on my way to work. by december i had to stop working because my nausea and anxiety were dibilitating. i saw 5 doctors who all found nothing and said i just had a virus. i stayed in bed until february when i was home alone one day, hadnt been able to eat one bite for 4 days straight. i could hardly stand up to walk to the bathroom due to my upper abdominal pain and was so weak it would puff me out by the time i got back. i lay down on my bed and called an ambulence. when i got to the hospital they found that i was severely dehydrated, had a dangerously low blood sugar level, and weighed only 38 kilos. i looked anorexic and they had to have a psycholist make sure that i wasnt.

i spent 2 days in hospital getting countless tests and scans to find nothing. then they finally scheduled an endoscopy for a few days later. i was sent home and basically lived on sports drinks to keep me alive. after my endoscopy i started to eat again. they found that the villi in my duodenum were completely flat, but the biopsy didnt show that i was celiac. the doctor put me on a gluten free diet anyway and i started to get a little better. as the months went on my health was like a rollarcoaster. some days i was able to go out and drive to the supermarket etc, and some days i was back to not eating again. i ended up in hospital again and they found nothing and sent me home. i have a wonderful GP and she tested me for everything else under the sun. all my nutrient levels are fantastic, as is my liver and pancreas. but she did find that i have fructose and sucrose malabsorbtion. she referred me to a fantastic dietition who helped me with a gluten, sugar, fructose, and lactose free diet. even though i have stuck to this strict diet and am definitely much better than i was, im still too sick to work or do other normal things. so i had a second endoscopy to check whether my villi are still flattened out or not. that was last week, and they told me that i have "mildy scalloped mucosa" which comes with celiac, and i have to wait for the biopsy results to come back. so now im just wondering why is it that 6 months later i still have scalloping of the duodenum? why am i not healing? or am i just healing slowly? i have an appointment with my GP this week who will contact my gastroenterologist about what they have found. has anyone been through anything this severe with celiac? or am i just really unlucky? id really like some feedback on what you think about all this.. thanks

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Miss Bonnie I can sympathize with you. I am post celiac diag 1 1/2 years. I am just now feeling a little better and have (so far) held down my new full time job. I was off work for a year after many emergency room visits and many doctors scratching thier heads. I have been Gluten free and dairy free for over a year. I noticed other things make me sick too. Oats in particular even the gluten free kind. I cannot go to a bakery because the flour dust in the air can make me very sick. Cross contamination was a big problem for me. I had to replace all of my wooden utensils and scrub down my kitchen. I know you probably know all of that but I do sympathize. Hang in there!

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You said you are lactose free but are you still consuming other dairy products? Casein could be the problem not just lactose. I would eliminate all dairy if you have not.

Also have you tried to keep a food and symptom diary to see if you can figure out what is bothering you on the days you don't feel well?

I was also hospitalized several times and bedbound for a few months prior to figuring out it was gluten. At 6 months gluten free I was still not well enough to exercise or go back to work or school. I was amazingly better in many ways and able to do a few basic household chores but I got tired fast and my legs hurt a lot in those early days as I rebuilt muscle lost while bedbound. If you are have issues with energy or muscle spasms or anything like that make sure you are on a good gluten-free multivitamin, ask the dr to test your iron, D and B12 and also maybe ask what you can do in terms of physical therapy to get back to the shape you were in before you got sick. Just remember it is a gradual process to get healthy when you have been that sick and not like flipping a light switch off and on.

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I too ended up in the hospital, went thru so many tests, docs found nothing. My kidneys were acting up and at first they thought it was stones, I have a problem with stones as well. My pancreas was swollen, my blood pressure was high (never had it before), and my gallbladder was swollen. These were linked to herbs in a liver cleanse I did. My stomach was a real mess.....it felt like the lining of my stomach had been stripped clean and acid had been thrown into my stomach. I was in alot of pain.

What had happened besides having a reaction to the herbs, is the cleanse revealed my health issues. I am gluten, dairy and high fructose intolerant. I felt like I was coming back from the grave, I was hardly functioning like yourself. If I could clean my floors in the hosue I felt lucky and I would have to keep stopping because I was exhausted.

You said docs told you your nutrient levels were fine. Did you see the blood work yourself? I was told the same and then when i got a copy of my blood work I was shiocked to see all the "low" marks. I looked up the the medical coding and found out that was part of my problem. At that point I didn't know why, later would find out it was malabsorbtion. Had a bone scan done and found out I had lost bone mass in both legs and my spine. And that where I put it together. My body was suffering from the lack of vitamins and minerals my body was able to absorb and if your villi are flat it would be my guess this is what is happening to you as well.

I can only tell you what worked for me and hope that it helps you as well. I had to protect my stomach, doc gave me a prescription for acid reflux which I took 2 times daily plus 2 doses of Pepto in between. I looked up all foods high in acid and avoided them. Just that right there was enough to relieve my stomach with time. I actually did this for 5 months, slowly backing off on the meds.

Every symptom I had a looked up on the Internet and linked it to a vitamin deficiency and started on extra vitamins, on top of my prescribed prenatal vitamin I was also taking. This was no overnight miracle but the persistance paid off. For me I did:

Vit D- to help absorb calcium, irritability and dizziness or vertigo, crawling sensation on skin, bladder issues, joint pain, poor concentration, memory

B12- for tingling in hands or feet, anemia, nerve damage, buzzing in ears, neuropathy issues

Magnesium- confusion and poor memory, fatigue, disturbed sleep, irritability, general lack of interest, muscle twitching, muscle contraction

Zinc- supports immune system, hair loss, taste,

Potassium- regulate nerve transmissions and muscle contractions, restless legs, charlie horses

Iron- for anemia

Silicon- helps maintain bone density and strength by facilitating the deposit of calcium and other minerals into bone tissue

L Carnitine- burning, tingling, stiffness in toes, feet and hands. Pins and needles feeling in feet and hands

Thiamine (B1)- hot/burning feet

My B12 and vitD deficiencies were the hardest to correct. As I read I found that B12 in supplement form is hard for the body to absorb and most will go right thru the body so I increased my intake to 3 a day, it did help. Did the same with vitD. I am not totally back on my feet yet, this is 7 months later. It has taken a great deal of persistance and as long as I can keep away from the gluten and high fructose I continue to get better. Read every single label.....I found there was wheat flour in my cooking spray, things I never thougth about before.

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