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Endoscopy Tomorrow

mary77

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mary77 Newbie
mary77
Posted

I'm going in for an EGD and intestinal biopsy tomorrow and I'm so anxious about it. I almost want to be diagnosed with celiac disease just so I can have a clear path forward. I'm also worried about my dad and sister who also exhibit many celiac signs but have never been tested. Here's my story.

I can remember having bowel urgency even as a child, but my symptoms really kicked in when I entered college. It started with eczema on my scalp and horrible cramping and burning in my stomach. I was put on Prilosec and had an endoscopy to look for an ulcer. Doc didn't find anything and didn't even look in my small intestine, let alone biopsy. I was told that I had a small hiatal hernia and IBS and they sent me on my way. Over the years, the pains have subsided a bit, but I've developed chronic diarrhea. I've had diarrhea every day for the past 12 years. I had my first child in 2005 and then suffered 3 consecutive miscarriages. Doctors did all the standard genetic testing and couldn't find the reason. I did carry my daughter to term after that in 2008. Since she was born, I've been exhausted all the time. I thought maybe that's just how moms feel. But then the diarrhea started to get worse. I've been up to 4 - 8 bowel movements per day. I started looking online and found information on celiac disease. Suddenly lots of things made sense. I removed all gluten from my diet for 4 days and immediately had more energy and less urgency to use the bathroom. Then I got scared and wanted a diagnosis before getting too far into feeling better. I'm tired of people thinking that this is all in my head. So I called my old gastro. They got me an appt within the week. So I got back on gluten and felt horrible immediately. I hope it's not all in my head.

For reference, my father has been diagnosed with diverticulosis, lactose intolerance, and Parkinson's disease. My sister suffers from menstrual irregularities, migraines, eczema, stomach pains, and weight gain. Neither have been tested.

I've spent a lot of time on this site this past week. You are all strong wonderful people with amazing and sad and inspirational stories. I'll definitely be sticking around here if i get a positive diagnosis.

Mary

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OasisFlyer Newbie
OasisFlyer
Posted

I'm new here, too Mary and I'm going to my doc tomorrow to beg for testing. As you said, I too almost WANT to be diagnosed with something so I know what is wrong with me. I just made a post of my own, so I won't go into all the details yet, but you are right about this site (which I have spent a lot of time on this past week as well), these people are amazing!!!!!! Best of luck to you, and here's to *hoping* we have gluten issues!

ravenwoodglass Mentor
ravenwoodglass
Posted

You could have a false negative on testing so do keep that in mind. When you're done with testing go on the diet for a good strict trial. Sometimes the body can tell us what the tests cannot.

mary77 Newbie
mary77
Posted
  • Author

I'm trying to prepare myself for that fact, but I feel like I'm going to lose it if they tell me nothing's wrong. I will probably go on the diet regardless, but I know that I will get very little support here at home without a positive diagnosis. I've had a rough week this week and hearing things like "I don't know how wheat can all of a sudden make you sick" doesn't help my mental state. *sigh*

mary77 Newbie
mary77
Posted
  • Author

I'm new here, too Mary and I'm going to my doc tomorrow to beg for testing. As you said, I too almost WANT to be diagnosed with something so I know what is wrong with me. I just made a post of my own, so I won't go into all the details yet, but you are right about this site (which I have spent a lot of time on this past week as well), these people are amazing!!!!!! Best of luck to you, and here's to *hoping* we have gluten issues!

Nice to meet you OasisFlyer. I hope you have luck at the doctor on Friday. I'll update here if I find out anything tomorrow. I'll also look for your post about your story. :)

ravenwoodglass Mentor
ravenwoodglass
Posted

I'm trying to prepare myself for that fact, but I feel like I'm going to lose it if they tell me nothing's wrong. I will probably go on the diet regardless, but I know that I will get very little support here at home without a positive diagnosis. I've had a rough week this week and hearing things like "I don't know how wheat can all of a sudden make you sick" doesn't help my mental state. *sigh*

It can make you sick 'all of a sudden' because celiac usually needs a trigger like a severe illness, injury or stress. Childbirth is a common trigger for women, for example. Sometimes it takes our recovery to make a 'believer' out of our families and when they see a reaction after we have healed and accidentally get glutened that can help also. Do try the diet strictly and you don't have to wait for the biopsy results. You can start the diet the day the tests are done. Sometimes our body gives us the answer before we even get the results.

OasisFlyer Newbie
OasisFlyer
Posted

I'm trying to prepare myself for that fact, but I feel like I'm going to lose it if they tell me nothing's wrong. I will probably go on the diet regardless, but I know that I will get very little support here at home without a positive diagnosis. I've had a rough week this week and hearing things like "I don't know how wheat can all of a sudden make you sick" doesn't help my mental state. *sigh*

Oh, Mary, I feel the exact same way. If my blood tests come back normal (if the doc will even DO the testing in the first place) I am going to lose it! I'm going on the diet regardless, too, and luckily my fiance is amazing with support, my brother is as well, but my parents... not so much. What you said sounds just like something they would say to me, and it doesn't help the mental state at all. It's good to know there is an online community of support though!

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nuttmegs17 Apprentice
nuttmegs17
Posted

Oh, Mary, I feel the exact same way. If my blood tests come back normal (if the doc will even DO the testing in the first place) I am going to lose it! I'm going on the diet regardless, too, and luckily my fiance is amazing with support, my brother is as well, but my parents... not so much. What you said sounds just like something they would say to me, and it doesn't help the mental state at all. It's good to know there is an online community of support though!

I hear you on the "lose it" part...I lost it earlier when my thryoid tests came back normal....I sooooo wanted it to be my graves rearing it's ugly head again, as that treatment is relativly straightforward...I'm terrified I'll never get a good answer and be like this forever (can you tell I'm getting anxious?!)

Good luck to you both!

mary77 Newbie
mary77
Posted
  • Author

Well...results are in. Negative bloodwork and negative biopsy. I'm back to square one.

Thanks for all of your kind thoughts. I wish you all the best.

ravenwoodglass Mentor
ravenwoodglass
Posted

Well...results are in. Negative bloodwork and negative biopsy. I'm back to square one.

Thanks for all of your kind thoughts. I wish you all the best.

Now is when you try the diet. False negatives on both blood and biopsy are not uncommon. Go on the diet strictly for at least a couple of months.

missj Rookie
missj
Posted

I totally get the lack of support. That's why I don't want to just go gluten-free without something to back it up. But I also refuse to make myself misrable for the sake of a diagnosis. So I'm hoping I can find some answers in the genetic tests.

ravenwoodglass Mentor
ravenwoodglass
Posted

I totally get the lack of support. That's why I don't want to just go gluten-free without something to back it up. But I also refuse to make myself misrable for the sake of a diagnosis. So I'm hoping I can find some answers in the genetic tests.

Just keep in mind that the genetic tests are not diagnostic. They can be a piece of the puzzle but there are folks with the most common celiac associated genes that never develop celiac and there are celiacs that don't have either of the two most commonly associated genes. I hope you get some answers and some relief soon. Sometimes what makes a believer out of those who are less supportive is seeing the positive changes that come about after we have been on the diet strictly and healed.

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