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IMPORTANT: I trust my doctor, I am willing to answer questions, but I want you all to know that where I am in the process of getting a diagnosis requires me to have an endoscopy- a positive blood test in my situation does NOT give me all of the information the doctors need. With that being said, here's my story...

 
This past Friday was the end of my eight week gluten challenge, a blood test, and another day in the land of waiting around for a specific diagnosis.  <_< 

I am here to tell you that I am sick and tired of feeling sick and tired, but only one biopsy was taken at my endoscopy in the summer, so I get to repeat the process of another endoscopy on February 19th, 2015.

However, there are a couple pieces of GOOD NEWS that I want to share with all of you.

 

1. I got my blood test results today and there is no question about it- I tested positive just like before. Why is this good news, might you ask? I was told that if the test wasn't positive "enough", I'd have to keep eating gluten until I returned to being positive so that I could have my endoscopy. Before, I had been five months gluten free, so the last eight weeks were awful physically, emotionally, mentally, and even socially. So I'm so happy to be headed towards an actual label of a diagnosis that I can DO something with to feel better.

 

2. I did NOT end up in the Emergency Room YAYYY :wub: . ( There were several panic attacks, many bouts of stomach pain/problems, and my depression/anxiety skyrocketed during the eight weeks, fatigue was over the top, and this will continue to be the way it is until after the endoscopy because I MUST eat gluten to get an accurate biopsy/sample, but I'm just SOOO happy to have made it this far! )

3. I am my own advocate for my health. It was April of 2013 that things first went haywire, but I will not give in or give up until I feel better and get a diagnosis!

 

Thank you for reading. Feel free to comment here or instant message me if you do not feel comfortable with posting to the public forum. I invite anyone and everyone to ask questions, partially because I enthusiastic about helping others in any way I can, but also because I need to pass the time until my endoscopy :lol:  

Good luck to everyone on their own individual journeys~

Val
 

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You have had two positive blood tests so you have celiac no matter what the biopsy results turn out to be. If you are still seeing the same doctor who thought one biopsy was enough I hope he will do the required 5 or 6 this time around. You may want to ask to be put on a cancellation list so if someone else cancels their procedure they can get you in sooner. 

Hopefully you know that with positive blood work you do need to gluten free even if by some chance your doctor misses damage on your upcoming biopsy. 

Here is hoping you heal quickly when you can get back to gluten-free but sometimes it does take some time to heal when we have had to redamage ourselves. 

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Although I'm aware that I'll need to go gluten free either way, I'm hoping for the results of the endoscopy to be more straightforward this time. Thankfully, I do not have the same doctor as last time. :)

I'm currently in a train with a zillion people, feeling squished but empowered by the idea that this forum exists and people are so supportive and helpful. I also recently attended a meeting from New England Celiac Organization- the people are so friendly and knowledgeable there.

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I am glad that you are finding your answers! Welcome to the forum!

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First, I am glad that you are going to feel better about this diagnosis.

 

I was on the team that researched the blood test to develop a better less invasive and faster method of diagnosing this disease. The biopsy was supposed to become necessary only in rare cases. Clearly, this is not what happened.

 

It seems to me that we need more research to diagnose this disease WITHOUT putting people thru months of serious intestinal damage and the vitamin deficiencies and organ damage with the dangers of long term consequences. 

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I'd be demanding to be put first on the list for that endoscopy. what happened to "first do no harm"?

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I'm sorry that you have to jump through extra hoops. I hope that you get a confirmed diagnosis and are on your way to feeling better soon!

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Thank you for asking- it went ok. But then the nurse called a week later and said that they need another week or two to have a few more people look at the biopsies before they decide on a final diagnosis. Grr I'm trying to be patient but it's difficult! 

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They may have told me, but I was kind of out of it after I woke up from the procedure, so I'm unsure. I do have some weird pictures of my insides that they gave me, but that's it. This Tuesday I should be able to view everything online, according to Patient Gateway. 

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Nice that you can view it online soon, I have a few doctors where I can do that and I really like it.  Let us know! :)

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There have been many times that I have continued to call, but no one has given me a clear answer because they said they want to have more than one person look it over since "my presentation is unique". Basically I'm still waiting. In the mean time I have been gluten free and I feel great 80% of the time but then a stomach ache will roll in like clouds before a storm.

Thank you for asking though- that means a lot to me :)

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I'm glad that your symptoms are resolving. It sounds like no matter what the results of the biopsy, you know for sure that gluten is the problem.

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Hey Val I hope you finally have all your answers and are feeling better!

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