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Scared

Jilly68147

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Jilly68147 Newbie
Jilly68147
Posted

This is my first post. I have been reading now for 2 months. In college I got a blood test and the doctor told me I had a slight allergy to wheat. (That was about six years ago) I did not follow the diet becuase I thought it was to hard and I was in denial. In December I started having really bad back and side pains, so I decieded to start following the diet to see if that would help. It has a little but I am still in pain and now I am scared that I have waited to late and have caused more serious damage. I have been crying alot lately just scared of what it could be. In college I lost of friend to stomach cancer at the age of 22, so of course I am expecting the worse. I know I have to get that byopsy but I really don't want to.

About two weeks ago after reading everyones posts, I thought I just need to make the appointment and get it over with, so today I have my first appointment with the GI doctor. I am very very scared, so please wish me luck!

Thanks!

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Jenn2005 Contributor
Jenn2005
Posted

Hi. I understand how scared you are but you are doing the right thing by seeking a dx. I was scared to death when my husband first got sick and I just drove myself crazy thinking they would find stomach or colon cancer when he went in for his biopsy. They were actually looking for cancer at this time, they never even mentioned or considered Celiac. So long story short when the biopsy came back it was positive for Celiac, and he had the gene test done which showed he had a Celiac and Gluten Sensitive Gene. He started the diet and has been gluten free for a little over 4 months now and we are seeing improvement. He was very sick when all this started and he has lost over 50 pounds but the improvements are happening. He has had 2 endospoy & colonoscopy procedures in 6 months and they have been clear of everything but Celiac and his 2nd one showed great improvement. Good luck on your procedure and keep reading on the board once you start the diet it will really help. Be sure to ask any questions everyone here is very friendly and happy to help.

Jennifer

Canadian Karen Community Regular
Canadian Karen
Posted

Hi!

Welcome to the board! I can understand your fear. There were a few times when my body was in such pain that I thought that my days were indeed numbered and cried because I was certain I wouldn't be around to see my children grow. I can remember sitting on the stairs, bent over in excrutiating pain, thinking the end was near. Gluten not only messes with your body physically, it also screws you up emotionally. That is why depression is so common with celiac disease. There are many people here actually when they get accidentally glutened, they become very short-tempered and unstable emotionally (me included!)

There are people on this board who literally have been on death's door before they finally got a diagnosis and they are healthy, vibrant gluten-free people now! You will get through this. Sounds to me like it is a strong possibility that it is celiac disease, and if that is the case, you are one step closer to regaining your health by finding out.....

I will be thinking of you today and sending you hugs........

Good Luck!

Karen

jerseyangel Proficient
jerseyangel
Posted

Jilly--Just want to welcome you in here and let you know that I understand your fears. I was ill for years--and had not even heard of Celiac. My dad had the early stage of colon cancer (thankfully he is still doing fine) and I was afraid that my problems had something to do with that. I saw a gastro. last spring, had the endo. and colo. (the colo. because at the time, we wanted to rule out other things, too). Happily, I didn't even have a polyp! Although I was dx. with Celiac, it was a sort of relief, because my mind was telling me it was going to be much worse. I know it's scary, but I think you're doing exactly the right thing. Make a list and tell him or her everything--even what you are afraid of. I'm sending good thoughts your way--let us know how you do :)

Guest stef 4 dogs
Guest stef 4 dogs
Posted
This is my first post. I have been reading now for 2 months. In college I got a blood test and the doctor told me I had a slight allergy to wheat. (That was about six years ago) I did not follow the diet becuase I thought it was to hard and I was in denial. In December I started having really bad back and side pains, so I decieded to start following the diet to see if that would help. It has a little but I am still in pain and now I am scared that I have waited to late and have caused more serious damage. I have been crying alot lately just scared of what it could be. In college I lost of friend to stomach cancer at the age of 22, so of course I am expecting the worse. I know I have to get that byopsy but I really don't want to.

About two weeks ago after reading everyones posts, I thought I just need to make the appointment and get it over with, so today I have my first appointment with the GI doctor. I am very very scared, so please wish me luck!

Thanks!

Boy do you have good company here! I was sick for almost 2 years and kept telling my husband I'm going to die and they'll never know why! I was so depressed and angry. I finally got a diagnosis and thought everything would be instantly better. I went into even deeper depression after I realized the impact this had on my life. I gained 30 lbs. adding insult to injury. I like this forum because alot of people here seem to have experienced the same thing and for the first time in a long time I no longer feel like a freak! This place has become a saving grace for me. Hopefully for you, in time with a good diagnosis and some comforting friends from here, we can help you get through your tough times. Even long distance cries with friends are cathartic! We have your back! Chins up!

Stef 4 Dogs

Jilly68147 Newbie
Jilly68147
Posted
  • Author

Well, I just got back from the doctor and I feel much better!! My byopsy is schedualed for March 21! She calmed most of my fears and told me that she will put me totally out for the procedure. So that was good! However, she told me that I should add gluten back into my diet to get an accurate reading. Just as my tummy feels a little better, I have to bring on the WHEAT!

Thanks for all the encouragement and support and taking the time to respond it means alot! :)

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    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
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    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      Contact them.
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