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Going In For Endo On Friday, Questions
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Hi everyone,

Going in for endo this Friday after negative bloods (TTg Iga and Immunoglobulin A).

I know the doc should've ordered more tests but I am thinking the endo is a good next step. What do you guys think? Of course I am worried it comes back negative not giving me answers but it also assures me that other issues can be ruled out. Is more blood testing necessary to completely rule out celiac?

Also, I am freaking out about the procedure itself but trying to stay calm. The anesthesia concerns me although the doc said it is jus a deep relaxer.

Any thoughts and words of encouragement are appreciated!!! :D

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My blood tests were all negative so I wouldn't automatically worry about the endo results. My biopsy was positive which is how I ended up here. (I'm so glad I did. :) )

I always get paranoid about the anesthesia. I know I shouldn't, but I do. I don't usually worry early, but then during the last 24 hours or so I get super anxious. I've never had a problem though and always wake up feeling... I won't say fine, but as I should. I had killer sore throat for a few days after my endo. I can't speak for other side effects as I had my gallbladder removed the day before so who knows what was what at that point. I would just recommend having some cough drops or sore throat drops around the house. I like Halls.

Remember, no matter the results, nothing is stopping you from being gluten free to see if it helps. A negative biopsy doesn't mean you don't have a gluten intolerance which can cause many of the same problems but there simply isn't a test for. If you got this far and you're prepared to go gluten free and okay with it, I say go for it either way.

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Try to relax about the procedure! I know each person's case is different, but I had a very positive experience! I was very nervous but my appointment wasn't until 4pm and at that point I was just ready to get it over with since I hadn't eaten or drank anything since 8pm the night before lol. Anyway, before I went back I wrote down a list of all of the questions I had and made sure to ask them to the nurse. From there, I got into a gown, got hooked to the IV, spoke briefly to the doctor, and then rolled down the hall to the procedure room. Once I got in there the anesthesiologist talked to me and was asking me about school and stuff. They put an oxygen mask over my face and told me that it was going to smell bad and then they gave me the anesthesia and I started getting really hot and then I started to panic because I couldn't ask them if I was supposed to feel hot because of the mask. That's the last thing I remember and honestly the worst part of the experience for me (and it wasn't even that bad.) When I woke up my parents were there and I had some ice cold water. They kept me for a little bit just to make sure I was good and then they let me leave and I got to go eat haha. From the time I woke up to the time I got home I only remember bits and pieces but it wasn't bad at all. I was actually feeling pretty good haha. Apparently I told my mom "these are some goooooooood drugs!" For the rest of that night my mouth was really dry and it was like I couldn't get enough to drink. The next day my throat was scratchy but it didn't really hurt.

It was my first time being drugged up and I was really nervous but it ended up being completely fine haha. If I had to do it again I wouldn't be nervous at all. Like I said, everyone is different but I think most peoples' experience with this have been fine.

Good luck! : )

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Thank you so much!!!! I love the reassurance people give on this blog! It's awesome!!!

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Hi everyone,

Going in for endo this Friday after negative bloods (TTg Iga and Immunoglobulin A).

I know the doc should've ordered more tests but I am thinking the endo is a good next step. What do you guys think? Of course I am worried it comes back negative not giving me answers but it also assures me that other issues can be ruled out. Is more blood testing necessary to completely rule out celiac?

Also, I am freaking out about the procedure itself but trying to stay calm. The anesthesia concerns me although the doc said it is jus a deep relaxer.

Any thoughts and words of encouragement are appreciated!!! :D

I am so in the same boat you are. My tests came back negative and well and I am also having an upper endoscopy done this Thursday. I am a little frustrated because I know something is wrong with me but supposedly I am lactose intolerant with no diarrhea! I do not believe that for one second. I know how you feel about going under anesthesia. This will be my 6th time going under and every time I wake up, I get sick to my stomach. If my biopsies come back negative, I am going gluten free to see if my symptoms change after eating. I am tired of feeling bloated, tired, and sick to my stomach after eating... Do you have a rash?

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I am so in the same boat you are. My tests came back negative and well and I am also having an upper endoscopy done this Thursday. I am a little frustrated because I know something is wrong with me but supposedly I am lactose intolerant with no diarrhea! I do not believe that for one second. I know how you feel about going under anesthesia. This will be my 6th time going under and every time I wake up, I get sick to my stomach. If my biopsies come back negative, I am going gluten free to see if my symptoms change after eating. I am tired of feeling bloated, tired, and sick to my stomach after eating... Do you have a rash?

Hey! So nice to find someone going through the same! Hopefully we'll both find answers! The only rash I have is a non-itchy one on my buttocks that I noticed this year when my symptoms got worse. Since it doesn't itch I am sure it is not gluten related. I do have eroding teeth which is usually associated with celiac and my youngest son has similar symptoms to mine (fluffy stools and he sometimes complains of stomach and leg pain). I also don't have diarrhea (my stools are fluffy and dissolve in the toilet water) but was once told I was lactose intolerant and I did have diarrhea back then. I am a vegan now so I don't eat any dairy, meat, or eggs . Do you have a rash? I wish you the best of luck this Thursday! Keep us posted on your results! :D

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Endoscopy is not hard or bad at all. Out of all the procedures i've had done, it was probably the easiest. I had an early morning appointment. The nurse went to put the IV in me and couldn't find my vein, so she went off to find an ultrasound machine, where she then told me my veins were deeper than what a "normal" persons is. Easy peasy for a change! She also gave me a warming gell icepack thing to play with (originally was for the IV, but she let me keep it as it was one use only). That helped me keep my mind off of it.

Then it was time for the procedure. I get wheeled into the room and had to wait for about 15 minutes. Then i was given this bit thing to put in my mouth (ugh i hated that thing) as they put the anesthesia into my IV and to lay on my left side. Last thing i remember was trying to swallow with that stupid bit thing in my mouth :lol:

Waking up from such a knockout is difficult for me. For example, with my gallbladder removal surgery it took me about 2-3 hours to come out from under (normally people wake up and are able to leave by about noon or so, i didn't till about 3 or so pm). So there was an additional amount of time and was still sort of out of it for the rest of the day. My throat was kinda sore, but at the time of the procedure, my throat was already raw soooo (due to my GERD and the vomiting i went through before going gluten free).

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I had mine in October and it was fine. I was panicking beforehand.

Make sure you have someone to take you home, some people are a bit spacy after, try and have a quiet time after.

Good luck, let us know how it goes

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Thank you so much for your kind responses! I think I am psychologically prepared for this. Hopefully I don't freak out tomorrow! :wacko:

Now physically speaking, I am not doing that good since this las week I upped my gluten intake and my knees are killing me. Plus my fluffy stools (sorry, TMI) are way less solid than they used to be!

Like other people on this forum have said, it is not that I want to be celiac - I just want answers and to find out why my son and I have similar symptoms. Next step after my endo is having him tested, for sure!

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Hey! So nice to find someone going through the same! Hopefully we'll both find answers! The only rash I have is a non-itchy one on my buttocks that I noticed this year when my symptoms got worse. Since it doesn't itch I am sure it is not gluten related. I do have eroding teeth which is usually associated with celiac and my youngest son has similar symptoms to mine (fluffy stools and he sometimes complains of stomach and leg pain). I also don't have diarrhea (my stools are fluffy and dissolve in the toilet water) but was once told I was lactose intolerant and I did have diarrhea back then. I am a vegan now so I don't eat any dairy, meat, or eggs . Do you have a rash? I wish you the best of luck this Thursday! Keep us posted on your results! :D

I had my EGD done this morning and it went good. The procedure took about 15 minutes and I felt fine after waking. My throat is a little scratchy and I'm coughing some. Yes, I do have a rash and it seems to be mainly on my arms, legs, buttocks, and I get some on my breasts. They start out as little red bumps then the bumps get bigger and form a blister like lesion in the middle. Once they pop, it burns and itches like crazy. I have an appointment with my dermatologist in January and I'll have him do a biopsy on them. I also have eroding teeth as well. I noticed my teeth have turned yellow and I brush and floss as recommended. About 6 years ago, I had 9 cavities at one time and just had my top wisdom teeth removed back in September because they were eroded and almost gone.

My GI told me he didn't think I had celiac disease because my blood work was negative and my CT scan didn't show signs, well my EGD showed otherwise. My duodenum (the first smart of the small intestine) is completely flat and has no ridges. My stomach was also inflamed so I have gastritis, and my esophagus shows signs of erosion (possibly from acid refux). He took some biopsies and I will know the results next week sometime. He told me go ahead and start taking lactase pills before I eat and start on the gluten-free diet to see how I feel and I will see him back in 3 weeks. Good luck tomorrow with your procedure. Let us know how it goes hon. :D

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I had my EGD done this morning and it went good. The procedure took about 15 minutes and I felt fine after waking. My throat is a little scratchy and I'm coughing some. Yes, I do have a rash and it seems to be mainly on my arms, legs, buttocks, and I get some on my breasts. They start out as little red bumps then the bumps get bigger and form a blister like lesion in the middle. Once they pop, it burns and itches like crazy. I have an appointment with my dermatologist in January and I'll have him do a biopsy on them. I also have eroding teeth as well. I noticed my teeth have turned yellow and I brush and floss as recommended. About 6 years ago, I had 9 cavities at one time and just had my top wisdom teeth removed back in September because they were eroded and almost gone.

My GI told me he didn't think I had celiac disease because my blood work was negative and my CT scan didn't show signs, well my EGD showed otherwise. My duodenum (the first smart of the small intestine) is completely flat and has no ridges. My stomach was also inflamed so I have gastritis, and my esophagus shows signs of erosion (possibly from acid refux). He took some biopsies and I will know the results next week sometime. He told me go ahead and start taking lactase pills before I eat and start on the gluten-free diet to see how I feel and I will see him back in 3 weeks. Good luck tomorrow with your procedure. Let us know how it goes hon. :D

Yay for you having your procedure already done and over with!!! I am so happy you are already getting the answers you needed. Thank you so much for posting about it! Hopefully starting your gluten-free diet will make you feel better! :rolleyes: Will post about my procedure when I am able to do so as it might help others just like you helped me!
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Well, so I went for the endo very early in the morning and it really was a breeze! Woke up feeling perfectly fine! Not even a sore throat! Only thing doctor found was non-erosive gastritis and now waiting for the biopsy results.

He said if I have had the gastritis for a loooong period of time (years) this would explain the eroding teeth and my symptoms.

Thoughts?! And thanks for everyone who offered their words of encouragement!!!! It meant a lot and it helped tons!

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Well, so I went for the endo very early in the morning and it really was a breeze! Woke up feeling perfectly fine! Not even a sore throat! Only thing doctor found was non-erosive gastritis and now waiting for the biopsy results.

He said if I have had the gastritis for a loooong period of time (years) this would explain the eroding teeth and my symptoms.

Thoughts?! And thanks for everyone who offered their words of encouragement!!!! It meant a lot and it helped tons!

PS--- I asked why he didn't order other Celiac tests before and he said the EMA is not used anymore and the DGP can be positive for other reasons that have nothing to do with Celiac. Hmmm... I have read here this test is very Celiac sensitive so I don't know. Any words of wisdom???

Thank you so much!

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PS--- I asked why he didn't order other Celiac tests before and he said the EMA is not used anymore and the DGP can be positive for other reasons that have nothing to do with Celiac. Hmmm... I have read here this test is very Celiac sensitive so I don't know. Any words of wisdom???

Thank you so much!

Have you received your biopsy results back? I have not heard from my GI yet, and my procedure was over a week ago. He did say it would take 7-10 days, but I think I'm going to call tomorrow anyways. I have been gluten-free for a week and I still do not feel well after I eat and I think it is from the gastritis and I can not wait to start feeling better. I also started taking Acidophilus and I am hoping this helps with my GI tract. Keep me updated on your results. :D

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Have you received your biopsy results back? I have not heard from my GI yet, and my procedure was over a week ago. He did say it would take 7-10 days, but I think I'm going to call tomorrow anyways. I have been gluten-free for a week and I still do not feel well after I eat and I think it is from the gastritis and I can not wait to start feeling better. I also started taking Acidophilus and I am hoping this helps with my GI tract. Keep me updated on your results. :D

Not yet! He said it was going to be about a week so I am hoping he calls tomorrow. I haven't gone gluten-free just because something tells me to get tested with the whole panel in case results come back negative (I only had the Ttg Iga and total IGA tests done). I am just so worried to be left without answers! He didn't see any abnormalities to the naked eye so we'll see what the results say. I don't even know how many biopsies he took! Ugh. Even though I am not gluten-free yet I haven't been heavily glutening myself. My knees hurt and my stomach bothers me constantly! I don't think this is just a matter of non-erosive gastritis but we'll see. Please keep us posted on your results as well!

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I have Panic Disorder. I am on SSDI because of it. So I was terrified of having the endo. My anesthesiologist was a godsend. He knocked me out cold and I felt nothing and woke up right as rain and thirsty. Got dressed, got a nice frozen bottle of water from the nurse and Hubby took me home where I slept all day because the extra Xanax the doctor had me take. My throat didn't really hurt I think because of the nice cold ice water I got as soon as I was conscious enough to swallow. However, I was clean for 9 months. They found GERD damage and stopped looking so it was a waste of time for me. My GI was also very ANTI-Celiac. He believed it to be in vogue. He was fired.

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I have Panic Disorder. I am on SSDI because of it. So I was terrified of having the endo. My anesthesiologist was a godsend. He knocked me out cold and I felt nothing and woke up right as rain and thirsty. Got dressed, got a nice frozen bottle of water from the nurse and Hubby took me home where I slept all day because the extra Xanax the doctor had me take. My throat didn't really hurt I think because of the nice cold ice water I got as soon as I was conscious enough to swallow. However, I was clean for 9 months. They found GERD damage and stopped looking so it was a waste of time for me. My GI was also very ANTI-Celiac. He believed it to be in vogue. He was fired.

Hi Darkfire Ann! So were you ever diagnosed with Celiac after all? Did you have blood tests done? What did you do after your endo? Are you gluten free? Just curious to see what road you took after the procedure! :D

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Hi Darkfire Ann! So were you ever diagnosed with Celiac after all? Did you have blood tests done? What did you do after your endo? Are you gluten free? Just curious to see what road you took after the procedure! :D

I had blood tests, all negative, I was 9 months clean. My Endo was a idiot. BUT he did send me to the allergist/immunologist. I was found to be allergic to: Wheat, Corn, Rice, Banana, Cantaloupe, Peaches, Carrots, Crab, Tuna, Fish, Shrimp, Barely, Oats, Hops, and Rye. Patch tested for Nickel, PPD, Black Rubber, Latex, Tylenol and ALL household/environmental allergies. Again, blood tests all negative.(I think need copies was 3 yrs ago) He also DXed me Celiac and warned against Dairy. We kinda fought over that.I was gluten-free at the time over 9 months clean. I wasn't for a while(long story) and now have the worst DH rash I have seen except maybe one or two pictures look worse than mine. Derm also Dxed me with DH rash Celiac Sprue. My Iron is tanked and am on pills but I am on 100MG Dapsone a day so it's a slippery Iron slope. The Derm did the test to make sure I can take Dapsone. He also did IFA,ANA which is positive now with a titer of 1:40 and a speckled pattern.

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Hello! Quick update:

After waiting almost 2 weeks for my endo results, I got a call from the nurse yesterday who said the doctor wanted to see me for my results. After a moment of TOTAL PANIC :blink: and after she scheduled me for the appointment I asked what he had said and if it was something bad. She then just said, "Oh no, that's what I was going to say next. It is nothing bad so no worries." SIGH, ummmm, maybe you should start by saying that when you call people?!? SIGH.

Anyway, has anyone else have had to go back to discuss results? I am still a little worried but she did say "nothing bad, no worries".

My appt. is on Monday, will update then! And please let me know your thoughts or if you have gone through the same.

Thanks everybody! :P

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    • SquirmingItch, I really appreciate you gathering info for me! To answer your questions, yes, I'm on Dapsone now and have been on it for about 4.5 weeks. I have been gluten free for the same amount of time. I started on 50 mg of Dapsone which didn't seem to help much. I spoke to my doctor about it and after about a week she raised it to 100 mg. Since then I did notice a huge improvement in both my rash and itch. I no longer have any active rashes and my itching isn't completely gone but it's very minimal. I have been getting weekly blood tests done and will soon be moving to monthly.  My DH skin biopsy was done before the gluten free diet and Dapsone. My results for the skin biopsy came back as inconclusive, but even with those results, my doctor was convinced I had DH. I specifically asked her about the fact that she took the biopsy directly from the lesion rather than next to it and if that affects the result. Her explanation was that if it's a fresh enough lesion that isn't scratched, there should be IgA antibodies present. But she said that an inconclusive result isn't surprising because the IgA antibodies come and go from the skin so quickly that it can be very difficult to get a positive result, even in someone who is positive.  That's when she decided to run the celiac blood panel on me. And even though those results came back positive for the deamidated gliadin and negative for tTg, she still is very convinced that I have DH. I am happy that my doctor seems to be certain, but I would just feel better if the results were more definitive. The one other thing I am waiting on is I have been asked to attend grand rounds at the local academic hospital in 2 weeks. I guess grand rounds is where all of the academic dermatologists and dermatopathologists get together to review certain complicated cases. They will meet with me, review all of my pictures, biopsies and blood tests. My situation has been so complicated so they asked me to come. I am hoping maybe then I will get some more answers. 
    • It sure is, it really is. 
    • shellyb, I have info. for you & you may yet be able to get an official dx from your dermatologist as she sounds like she would be willing to learn. If you are dx'd with dh it is definitive & no other testing is needed. You don't need to see a GI. Im in FL & have had a long day watching Tropical Storm Hermine & making preparations for it's track which is over where I live. I'm tired! I will have links for you to reputable medical info. on the rash but it make take me till tomorrow or even longer if we lose power.  I'll be back as soon as I can. Question: You're on Dapsone now? How long have you been on it? How is it working for you? Are you getting the proper testing at regular intervals to make sure it isn't doing bad things to you? Were you gluten free before the skin biopsy?
    • Thank you so much for your quick response, GFinDC. While I wouldn't be completely opposed to another skin biopsy, I already had 4 done (3 were done prior to my dermatologist suspecting DH) so I don't love the idea of  yet another hole and scar on my body. Plus, fortunately I don't have any fresh lesions now, which I believe is needed for the biopsy. I wish I would have known to see a GI before going gluten free but I was so desperate to get any relief that I started that and Dapsone as soon as my doctor mentioned it to me.  My rash is definitely symmetrical and I have it in all of the "classic" DH spots although it basically spread over my entire body. As much as I'd like a more formal diagnosis, I really don't think I can go through all of that again. It was so bad that not only was I getting no sleep but I had to change my sheets every morning because there was blood all over them. Sorry, TMI. The worst part is that this all developed during my ninth month of pregnancy and got much worse after I delivered my baby. So not only was I dealing with this insanely itchy rash but I had a newborn and a toddler to take care of.  My daughters' pediatrician did mention doing DNA testing on me first and then my daughters to see if there's any concern that they may be susceptible. I may just go that route for now. I was just curious if others have had similar test results to mine and how did their doctors treat it? Thanks again!
    • Hey guys, the last year and a month of transitioning to totally gluten free was hard, but I now seem to be healthy. The first six months I got horrible cramps that would suddenly come and hit hard, but I really havent seen any of those since about February-March. One thing that I wouldnt say has gotten better is my psyche. I was always sort of an anxious person (hard not to be when you dont feel well yet you have "IBS" and you're just "nervous", which all of you probably know), but I am borderline hermit now. I finally went to the doctor today and was prescribed prozac, so hopefully that helps, but I was just wondering about you guys? Thanks  
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