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Pre-Endo Freak Out
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I am going in for an endoscopy first thing tomorrow and my nerves have grown arms...lots of them. I am nervous about the procedure but I am sure it will be fine. The nurse called today and said I would be "absolutely comfortable." I am afraid that the blood test will be confirmed but I am equally scared that it won't. I am scared that they will find something that we aren't even looking for (maybe the watermelon tree mom always said would grow if I ate the seeds?). Anyway, maybe I should have let the positive blood test be enough (tTG IgA was 133 with >19 positive). My thinking is that I should know if there is damage and my hope is that, if I get a confirmed diagnosis, my kids can be screened and diagnosed by blood, saving them from the endoscopy.

On a side note, I am walking around my kitchen eating some of all the food I love (literally ALL of it) that I may not be able to have again. I am so totally uncomfortable and my stomach feels like it has pop rocks in it. Necessary? No. Justified? I think so. :)

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The worst part of the procedure for me was waiting for it to be done. I think you may have the same feeling when it is over. The test itself is something you won't even remember. You will simply 'take a nap' and wake up and go home and start your gluten free life. With positive blood tests you know you need the diet no matter what the biopsy results are as the tests can have false negatives but not false positives.

Try not to worry and hopefully you will recover soon but things can be up and down at first on the diet. Ask any questions you need to ask.

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The worst part of the procedure for me was waiting for it to be done. I think you may have the same feeling when it is over. The test itself is something you won't even remember. You will simply 'take a nap' and wake up and go home and start your gluten free life. With positive blood tests you know you need the diet no matter what the biopsy results are as the tests can have false negatives but not false positives.

Try not to worry and hopefully you will recover soon but things can be up and down at first on the diet. Ask any questions you need to ask.

The endoscopy was a total breeze. I was OUT like a light and don't remember a thing. The doctor said that he did not see any obvious damage but will know more once the samples are looked at. He did says that, based on my blood work, he feels stronly that this is celiac and I should remove gluten. This doctor was great. He said his dad has celiac and this makes me think that he is more aware than others (like every other doctor I have ever had). I feel lucky to have found him and my PCP. For my entire adult life my doctors have told me that I am stressed and depressed and need to be medicated. Every symptom I have was blamed on depression. I started saying no to medication years ago because it never really helped. I finally found a doctor that listens and here we are. There are good ones out there, you just have to keep looking!

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So glad your EGD went well. I cried like a baby when they took me back. It really wasn't bad at all, but I was terrified since I've never had any kind of procedure done. My doctor diagnosed me based on a blood test as well. The only damage found in me was inflammation. The doctors don't always find damage with a biopsy. You'll likely feel a lot better once you start gluten free. It can be very difficult at times, but I also find it to be quite fun when I try new recipes that taste fantastic or when I find something new at the grocery store!

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The endoscopy was a total breeze.

So glad everything went smoothly. Sounds like you have an amazing doctor as well. I think people get really good care from docs that have a personal stake in a condition! How rare to find one with celiac in his family. :)

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    • Mnoosh,    Can you give us a link to the article you read about the increased risk after being diagnosed and maintaining a strict gluten-free diet??       IMO,   You are over reacting to a misprint or most likely a misread article.
    • Yes!  With dairy, celiacs can often have a temorary lactose intolerance due to damaged intestinal villi (where the enzymes normally are released to digest lactose).  Of course you could be naturally lactose intolerant based on race or age.  It is best to stick to a whole foods diet while you are healing.  Really, is ice cream or potato chips going to provide you with nutritional value?  Stick with naturally gluten free foods like meat, fish, fats,  veggies (even those with carbs like sweet potatoes or winter squash) and fruit.  Avoid that processed junk as you may react to the additives right now.  Later, you can add back in dairy (test) and other foods you miss and crave.   Good luck!  
    • Take a deep breath and calm down!    The incidence of cancer with Celiac Disease is rare.......it can happen but the vast majority of people never have that experience.  You may have somewhat enlarged lymph nodes due to inflammation from undiagnosed Celiac but that will all calm down and go away once you get going on the diet.  Believe me, there are many of us that have things happen during the diagnosis and early recovery period and everything turned out just fine.  There is an elevated risk for some cancers with Celiac but that risk goes back to that of the general population after a couple of years on the gluten-free diet. I cannot remember the exact time frame but it is somewhere between 2-4 years, I think.  So many of us went years without a diagnosis and when it was all figured out, we have gone on to be healthy with little complications.  Really...do  not worry about this.  Concentrate on learning all the ins and outs of this disease and how to live gluten free happily.  We are here to help you and guess what? The diet is not as bad as some make it out to be. Many things can be made gluten free and are every bit as good as their gluten counterparts. The diet may not be convenient but it is not hard. I would not lie to you!   
    • Well....one common symptom that most celiacs have when they are diagnosed (or undiagnosed) is anxiety.  So, there is a risk of cancers, but science has demonstrated that that risk goes down on a gluten free diet (if you have celiac disease).  In goes down to the same risk as those without celiac disease.   I kind of was a basket case.  I drive my family a bit crazy because I was anxious.  I felt a bit stupid too.  I guess I had a little brain fog going on too.  All that resolved after I healed. Welcome to the fourum.  Read our Newbie 101 thread under "Coping" (pinned at the top of the page) and learn about hidden sources of gluten and cross contamination.  I think most of us do not worry about cancer. We mourn the freedom to eat anything anywhere!   I did not have swollen lymph nodes, but I am sure others have and they did not have cancer.  Hopefully, they will chime in and set your mind at ease.  If not, you can search for "lymph nodes" at the top of the page (little magnifying glass).  There are lots of members with the same issue!  
    • I was recently diagnosed as having celiac and to be honest the part I'm having the most trouble with isn't the change in food or lifestyle. I'm really upset about what I've read about the risk of cancer increasing with celiac disease. I think this is playing into my fears because I currently have lymph nodes all over my body-my Doctor says they are not considered swollen or concerning, but I don't usually feel nodes. The lymph nodes and horrible diarrhea for the last 3 weeks were what got me into the the doctor for lab work. My blood work came great so I'm wondering if anyone else experienced lymph nodes reacting when they found out they were celiac? Also how do you deal with anxiety surrounding the increased risk of cancer? Thanks!
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