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Capsule Endoscopy - Experience With This?

Waitingindreams

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Waitingindreams Enthusiast
Waitingindreams
Posted

Okay, so I know that the standard when being diagnosed for celiac disease is to get a blood test followed by by an endoscopy. My doctor decided the blood test was enough, and immediately put me on the gluten free diet. I felt better almost immediately, so I do know that gluten is an issue for me.

 

However, despite feeling much better - after about six months on the gluten free diet I do still notice some bloating, my issues haven't completely gone away, and I feel like I am even more sensitive to lactose. I decided to look into getting an endoscopy done. UCONN offers 'Capsule endoscopies', where they have people swallow pills with cameras on them so that they can take pictures of your entire digestive tract. I want to get this procedure done so that I can know exactly where I stand - and make sure I continue to make progress.

 

I am a little scared at what they might find. Has anyone else had a capsule endoscopy done? How was it? Am I thinking it'll be worse than it is? I'm paranoid they'll find a lot of damage.

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w8in4dave Community Regular
w8in4dave
Posted

From what I am learning. For Celiac they have to take a biopsy of your small intestines. So not sure the capsule is what you need. I think your not really giving your self time to heal. It's only been 6 months. I am 7 months close to 8 months gluten-free, a few months Crn F. Altho I can take a small amount of lactose. I certainly cannot eat alot of it. Your villi have to heal. It didn't get in that shape in 6 months. It may take longer than 6 months to heal. Good luck and don't be scared. You'll be ok :)

Waitingindreams Enthusiast
Waitingindreams
Posted
  • Author

Maybe you're right, I know it hasn't been that long, but I was still feeling kind of sick after eating gluten free food - I think it was because of the sugar, it was feeding the candidiasis and preventing me from healing further. I just want to finally feel normal again!I feel like there is so much wrong with me, it seems like a long way to go still.

LauraTX Rising Star
LauraTX
Posted

With the capsule endoscopy they also can't take cultures and stuff.  It is so simple to do, no prep needed other than an empty stomach, I would go with a traditional endoscopy.  However, remember your biopsy will be negative for Celiac while you are on a gluten-free diet so don't let them mess with your diagnosis over that, but hopefully they know better.  

Waitingindreams Enthusiast
Waitingindreams
Posted
  • Author

I just want the endoscopy done to ensure I am healing, won't they be able to check the damage just by looking at it? :\ I really don't want to go for a traditional endoscopy after hearing about all of those people getting really sick from the dirty endoscopes last month. :( 

 

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I don't want to go for a celiac diagnosis, I just want to check my progress. I was already hesitant about getting a regular endoscopy done, then when I saw those news outbreaks it was even worse! My immune system is already shot, that is scary for anyone, let alone someone who knows they have an autoimmune disorder. When I found out about the capsule endoscopy option, I figured that would be a safer way. I know I definitely have celiac disease, I would just like to make sure I am healing/my candida is dying, etc. 

kareng Grand Master
kareng
Posted

There are millions of endoscopes and colonoscopies done safely ever year.

cyclinglady Grand Master
cyclinglady
Posted

I am pretty sure you can not see candida/fungus or other micro organisms because they are even smaller than the vill. In my case was not visible on the scope, but the biopsy showed moderate to severe damage. The camera will pick up polyps, crohn's, tumors, etc.

It has taken me almost a year to feel better and I was symptom free prior to my dx other than anemia (in seven weeks gained intestinal symptoms between blood test and scope eating excessive amounts of gluten foods).

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Waitingindreams Enthusiast
Waitingindreams
Posted
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kareng: I know, but that doesn't help me. I was asking if anyone had experience with a capsule endoscopy, or even with a regular endoscopy. I've never had either. For a regular endoscopy: - is it painful? A long procedure? How long does it take to get results? Etc, etc. Knowing that the procedures are done safely each year doesn't ease my mind, because I've never had that type of procedure done and I was already anxious. I don't want to live in fear either, especially when it comes to my health - but I thought a capsule endoscopy would solve that problem and I'm still not sure if it will or not. So far it doesn't seem like people are in favor of that method. 

 

CyclingLady: Oh wow! Okay, that's good to know. I thought my intestines would look all white and infected from the candida or something, ugh. I hate thinking about it. So, now I'm not even sure if it's worth it...I just wanted to have my progress checked..would a biopsy help with that? I'll probably come up negative for celiac since I haven't been eating gluten, but I don't want a diagnosis - I just want to see how I am healing. I thought a capsule endoscopy would be the easiest method for that, but I guess it was too good to be true. :\

Waitingindreams Enthusiast
Waitingindreams
Posted
  • Author

Ah, well this might help me, or anyone else who is paranoid about this procedure...though now I'm not even sure if it is necessary:

 

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RMJ Mentor
RMJ
Posted

If you just want to check your progress you could have the blood tests repeated. They may not be back to normal after only 6 months gluten free but they should be closer to normal.

kareng Grand Master
kareng
Posted

Everyone else is responding to the fact that you can't biopsy with just a camera. I wanted to respond to your concern that 9 people in one hospital had an odd outcome with a procedure that is done, literally, millions of times a year without an issue.

If you don't have an endo to compare to, I'm not sure how helpful it will be. If it shows you still have damage, you don't know if its the same or getting better. If you have no damage, will a doctor tell you you don't have celiac? That could happen and be wrong. Unless there are other things they want to look for, like ulcers, I don't see the benefit of having either the pill endo or the regular endo.

You had a positive blood test, the recommended follow up is to re- blood test about 6 months and a year later. Then every year after. I will add that link in a minute.

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"How often should follow-up testing occur?

New celiacs should receive follow-up testing twice in the first year after their diagnosis. The first appointment should occur 3-6 months after the diagnosis, and the second should occur after 1 year on a gluten-free diet. After that, a celiac should receive follow-up testing on a yearly basis. We recommend checking both tTG and DGP (Deamidated gliadin peptides) at each screening."

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"Once I’ve been biopsy-diagnosed to confirm celiac disease, do I ever need to have another biopsy done?

Provided you received a clear diagnosis and aren’t experiencing issues there’s no reason to have another biopsy. Even though you may not notice any symptoms from consuming gluten, the disease is still active and can lead to severe complications over time if gluten is sneaking into your diet. Therefore, we recommend annual testing to check for elevated antibodies in your blood."

cyclinglady Grand Master
cyclinglady
Posted

If your doc orders the camera, than go for it! It would be cool to see the insides of your intestinal tract! You just won't get a visual on everything. Do more research so you know exactly what it can do. I am not a doctor, that is for sure. Consider a regular endoscopy now that you know you can get "knocked out" for it.

You mentioned that you are lactose intolerant. Maybe it is an allergy. Are you off all milk products? Are you keeping a food journal? Rotating your foods or eating the same thing day in and day out?

You have rosacea. What triggers that? There are many triggers for me but sulfites and garlic provoke symptoms (I have ocular rosacea too).

Garlic will give me intestinal problems too.

Again, six months may be too soon for adequate healing for you. There is a huge learning curve during the first few months of going gluten-free. So factor in that time (mistakes) that could have delayed healing.

Waitingindreams Enthusiast
Waitingindreams
Posted
  • Author

If it seems like I should know all, or most of this - I just want to put it out there that I was diagnosed by my primary care physician (I don't yet have a GI - not sure if one is necessary?) And I found out I had celiac disease through a voice mail. "You have celiac disease, I am putting you on the gluten free diet - see you in six weeks!" So, he didn't exactly help me transition through this. He never told me I should have blood levels re-checked, never recommended a biopsy or endoscopy, etc. It could be because I was really sick and he wanted to get me off gluten asap, but I'm really not sure what his reasoning behind it was.

 

RMJ - Okay, thank you so much! I didn't know that you should have your blood tests repeated. I'm trying to get in for regular blood tests (just to have my vitamin levels checked) so I might as well have that checked too! 

 

Kareng - Thank you, for all of that information! I know you meant to ease my mind, I'm just so stressed with everything. (look at my signature! :( )  I didn't really know much about celiac disease prior to the diagnosis, and there is no way I'd start eating gluten again just for the biopsy. I just wasn't sure if an endoscopy would even help at this point. I thought maybe I should be going every year or so to check my progress, but if I can do that with a blood test, even better! Yeah, I've never had the procedure done and the thought of them shoving the tube down my throat is horrifying. I was trying to read the article I posted before to help, but then people were saying they woke up during the procedure. AGH. It looks like I might not need an endoscopy done at all after all, and that is great news. I'd much rather have the blood tests.. -scaredy cat- Lol. 

 

You guys have been super helpful, I really appreciate it. 

 

CyclingLady - My doctor didn't order any of this, this is just me trying to be proactive and take charge because I wasn't seeing full results - though W8in4dave does have a point, it hasn't been -too- long since my diagnosis. I will keep an endoscopy as an option on the back burner, but knowing I can have blood tests every 6 months is much more preferable..and convenient because my doctor's office has a blood lab downstairs. 

 

I don't think I have a milk allergy, but yes! I am currently (since yesterday) off all dairy products. I plan on staying off them for an entire month and checking my results. I believe I am lactose intolerant because of the celiac disease. I did not become lactose intolerant until late 2010 (which is also when all of my other problems started, such as the seb. derm and the weight gain), and I was diagnosed with celiac in July 2013. 

 

My rosacea also didn't start until I was older - about 19 or 20 years old. I'm not sure what triggers it - I don't drink alcohol, I now avoid spicy foods, I'm off gluten (of course!) and I'm just now eliminating dairy. I have noticed that vinegar (red or balsamic)  makes it flare up, so I stopped eating that as well. I've never seen a full remission in my rosacea. I've been to 3 dermatologists. I think it might be related to the candida..maybe when that's fully gone, my face will clear up fully? Or maybe it is dairy related and I'll see results soon. 

 

That is true - I did make a few mistakes. Ugh you guys are awesome! You're telling me more than my doctor did, I'm glad I found this site. No idea you should get your blood levels checked every 6 months or so, i thought I'd need to get endoscopies done.

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