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Coping, Answers, Support

AVR1962

By AVR1962
in Coping with Celiac Disease

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AVR1962 Collaborator
AVR1962
Posted

This has been an incredibly hard journey! If it weren't for the support her I don't know where I would be. My family almost seems to not care. I keep telling myself they don't understand because they aren't living in my body and know just how sick I have been. From time to time though I have just wanted to crawl away from reality.

I have known something was wrong for 2 years but could not figure out what. At the time I was dealing with restless leg, blurred and double vision, sleeping 10+ hours a night, stomach issues, boughts of diarrhea and constipation. I then did a liver cleanse and all my medical issues came to the forefront. This was Feb of this year, 7 months ago. I was so incredibly sick. I ended up in ER with heart palipataions going nuts, chest pains.....found out my blood pressure was high.....I have always had low blood pressure. I was dizzy, nauseated, my skin was getting hot blotches, I could not think or remember. I felt like a walking shell of a body. I was in terrible pain......my spleen and gallbladder were enlarged, kidneys were causing me lots of issues. I have had stones and have 2 that have been lodged for 20 years. Crystals had formed in my kidneys from not getting enough water while on the herbal cleanse and I ended up passing sand like stones which is very painful. My calcium was high, and having the pronlems with stones docs wondered if my parathyroid was bad. Scan and tests showed parathyroid to be healthy but a growth was found on the thyroid and I am currently on meds to try and shrink the size of the growth.

My family has a long history of food intolerances and one of them suggested I try going off glutens to see if it would help me. It did. Then went off dairy and that too helped me. I have been gluten-free since April, making all kinds of mistakes and having to read and reread lablels. I was able to get the dizziness to pass by keeping with my diet however that will be one of the first things to come back and with the repeated glutening I have had very few days that I have not been off balance in 7 months.

Tests showed that I had bone loss and I have contributed most of my symptoms to malabsorbtion. I have looked every symptom up trying to link it to some vitamin deficiency and one by one I have eliminated alot of my problems!!!!

Yesterday I was scheduled for an MRI, had to have blood work before and asked doc to retest my calcium.....I had been having tingling in my hands and feet which can indicate low calcium levels. Sure enough, calcium was 1 degree higher than normal low level. Not good, that means my calcium is fluctuating which still could mean my parathyroid is not healthy. Of course the doc who did the MRI could not tell me the results, I have to wait til next week for the results.

I was just so low yesterday. I had just got glutened over the weekend, and in the process of experimenting with dairy and realizing I was fine with cheese and yogurt, I realized this week that I cannot have milk and got incredibly sick all over again. My stomach has been a mess and I don't want to project all this on my family so I just try to keep going and not burden anyone but yesterday was hard. I posted on my FaceBook page that I had the MRI and out of over 200 "friends" I got one response, not a word from any of my family. My husband, knowing I had the test, didn't even ask.....I offered the conversation instead. It realy makes me feel very alone!

I see the progress. Looking back to Feb when I was terribly sick, I feel thankful, almost like I have been given a second chance at life. With all the testing I continue to put one foot in fron of the other. I do hope one day life will seem normal again!

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gluten free overseas Apprentice
gluten free overseas
Posted

I am really sad for you that you have so little support. Is it possible to find another person in your area who is also gluten and casein/dairy free? I feel very heart to heart with others on the same diet because it IS really overwhelming sometimes.

I understand about the glutening problems. I don't eat out much anymore. I have one or two restaurants that I know are safe and have dedicated friers etc, but mostly, I just make everything myself. Sometimes, it feels huge and burdensome, but then I think about how much better my body feels and that the quality of my life is so much better. I want to live to see my children grow up. It keeps me on the diet.

There are ways to get away from using dairy. I use a lot of coconut milk and rice milk in my baking. When I make pancakes, I fry the bacon first and then use the bacon fat to cook my pancakes (so that I don't use butter). I really miss cheese, but... it's not worth being severely constipated, so... it's sad, no cheese. I don't live in the States, but I hear that there's even rice milk mozzarella now--I think you can still figure out how to do pizza and everything. Just wait--you go off casein/milk, and I bet your skin will look great. It'll be like aging backwards. I LOVE dairy, but I have peace now that I can finally let it go!

I hope you can find a friend who can walk this road with you. It's not an easy one, and it can feel lonely!

shadowicewolf Proficient
shadowicewolf
Posted

Hard cheeses have no lactose in them, neither does yogert (if i remember correctly).

I know what its like :(

Try being in a house where their like "you just need to start trying it again". Umm.. no thank you.

kennedymoore Rookie
kennedymoore
Posted

I read your post and could certainly identify with you. Thank you for trusting us enough to share your feelings. I know just having a place where you can say how you feel must have felt good.

I often say that family friends get tried of us being sick because as far as they are concerned there is no end in sight. What they fail to realize is that good health is on the way. The most difficult part... getting the diagnosis is behind you. You will still have daily challenges, but as soon as you get the proper diagnosis for the damaged caused by years of nutritional deficiency the best is just around the corner.

With God, a gluten-free diet, proper nutritional support and emotional support from other celiacs you will live a better life than most of those who are not as fortunate as us to know what foods are hurting us and how to heal our bodies.

You started your post with "This has been an incredibly hard journey!" I said that too. In 6 months I would venture to say that you will be saying, "This has been an incredible journey!"

The day I was officially diagnosed, I skipped happily out of the doctors office with the best prescription I never had - a gluten-free diet!

It was trying navigating the diet, however, enjoying good health was indeed a sweet reward for those early days.

Be encouraged and focus on you, even when no one else does. Cheer yourself on, pat yourself on the back, hug yourself when you need a hug, and always believe in "you".

Johnny Patout, a licensed social worker who facilitates a celiac emotional healing support group in Louisiana says something that is powerful and enlightening that I would like to share with you.

He says, "It's impossible to place, or to know, the value of that which has not happened." For instance, none of us know what worse fate may have occurred had we not had to deal with the challenges and obstacles placed in our lives.

Soon you will see the blessing this challenge really is. Take care.

AVR1962 Collaborator
AVR1962
Posted
  • Author

[quote name='gluten free overseas' timestamp='1315057323' post='727513

I really miss cheese, but...

AVR1962 Collaborator
AVR1962
Posted
  • Author

I know what its like :(

Try being in a house where their like "you just need to start trying it again". Umm.. no thank you.

I have a family member who has actually told me if I would "stop obsessing" over things it would all go away. Stop obsessing? Geemany, I have tried so hard to be positive and have not shared near the degree what I have been thru. Got an email from the same family member in connection to the MRI telling me the tests were a waste of time and money. Guess I need to limit any info to this individual.

AVR1962 Collaborator
AVR1962
Posted
  • Author

I read your post and could certainly identify with you. Thank you for trusting us enough to share your feelings. I know just having a place where you can say how you feel must have felt good.

I often say that family friends get tried of us being sick because as far as they are concerned there is no end in sight. What they fail to realize is that good health is on the way. The most difficult part... getting the diagnosis is behind you. You will still have daily challenges, but as soon as you get the proper diagnosis for the damaged caused by years of nutritional deficiency the best is just around the corner.

With God, a gluten-free diet, proper nutritional support and emotional support from other celiacs you will live a better life than most of those who are not as fortunate as us to know what foods are hurting us and how to heal our bodies.

You started your post with "This has been an incredibly hard journey!" I said that too. In 6 months I would venture to say that you will be saying, "This has been an incredible journey!"

The day I was officially diagnosed, I skipped happily out of the doctors office with the best prescription I never had - a gluten-free diet!

It was trying navigating the diet, however, enjoying good health was indeed a sweet reward for those early days.

Be encouraged and focus on you, even when no one else does. Cheer yourself on, pat yourself on the back, hug yourself when you need a hug, and always believe in "you".

Johnny Patout, a licensed social worker who facilitates a celiac emotional healing support group in Louisiana says something that is powerful and enlightening that I would like to share with you.

He says, "It's impossible to place, or to know, the value of that which has not happened." For instance, none of us know what worse fate may have occurred had we not had to deal with the challenges and obstacles placed in our lives.

Soon you will see the blessing this challenge really is. Take care.

Thanks so much for your reply and all of the encouragement, it means alot!

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shadowicewolf Proficient
shadowicewolf
Posted

Oh wow, that sucks :(

Also, the cheese and yogert thing: If you can eat those two but not milk you most likely have a problem with lactose.

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