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Celiac3270's Endo
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43 posts in this topic

Good luck, celiac3270! I hope so much that you get some answers to your continued symptoms.

I'll be thinking about you!

Gretchen

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Good luck, celiac3270 and Stacie. I will be praying for both of you.

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I obviously missed the beginning of this. Sorry to hear that celiac3270 will be undergoing this. I will add you to my prayer list and echo the other sentiments. :)

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hey good luck, i hope everything works out ok

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Yes! I've been trying for half an hour to get in....my internet connection was really screwing up for me. It's 7:30 in NYC now.....I had told you before that they wanted me at the hospital by 9:30 for an 11:30 endoscopy. Now, they want me early--8:30 at hospital for 10:30 endoscopy......

Anyway....it's the big day :).....I'll post when I get home, whatever -- unless the internet messes up on me, again.....

Thanks again

-celiac3270

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Hi,

The endo. ended a few hours ago, but I couldn't get on here until now to tell you. As I said, I had been having trouble with my internet connection. In my first endo, the doctor only took "one biopsy" of the intestines. This time I had a lot more samples taken....the doctor said that he took a few extra samples to check for any problems with lactose.

Obviously, it'll take awhile to get the official results of everything and get the testing of the samples done, but based on what he could see, the doctor said that the intestines were smooth without any "scallop marks". My stomach, however, looked red and irritated (red spots all over the inside of my stomach. We'll try to find out what's causing that irritation. There are no ulcers and nothing wrong in terms of appearance (besides redness and irritation in stomach).

I didn't feel that well coming out of it. Because it was a longer endoscopy, the nurse said that I probably got a lot of air into my stomach and therefore, abdominal pains, gas, and bloating would be perfectly normal. Additionally, I could experience nausea from the anysthesia. I have been nauseaous since I woke up and have had abdominal pains. The doctor actually thinks that the abdominal pains may be due to gas based on how I described them feeling, where they're located, and how I cope. Rocking back and forth dislodges the gas, curling over or putting a pillow over my gut are both methods of kind of squeezing it and therefore, pushing out the gas, and when it gets really bad, I often extend my bottom up into the air (sorry to get so detailed :D ), which the doctor said is the easiest way to get gas out. Anyway, it was a very imformative day, though I'm feeling the effects of the endo.. Last time I had no nausea, pains, vomiting, or anything and could have even gone for a run or something after. This time I didn't feel that good and it turned out that I had to wait three hours after getting to the hospital, so I ended up starting at 11:30, anyway, even though I arrived an hour earlier as they had directed due to someone else cancelling.

Oh, the doctor said that when the villi don't heal completely due to length of time with celiac disease and without treatment, sometimes the enzymes are damaged, as well....I can't explain it very well, but it could be that my intestines can't handle.....say, sugar...so he's going to find out about that when he reviews all the stuff......(you can't see the villi while doing the endo.)..........

Anyway, thank you for your support. I'll let you know when I get the official results back and until then, I think I'll just try to rest up and feel better.

-celiac3270

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Hi celiac3270.

Thanks so much for the update. I sure hope you start feeling better soon, you should feel back to "normal" by tomorrow, but your "normal" has not been that great. We all want to see you feeling great. Certainly something is causing the irritation in your stomach. Hopefully the doctor can help you figure out what it is.

Get some rest and feel better.

God bless,

Mariann

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Hi celiac3270,

Thought about you today at work, hoping all was well.....

I know results won't be for awhile, but I am glad you have it over with.....

Karen

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celiac3270, I thought of you today too. I am sure you are glad that's all over with, now you just gotta wait on the results which sometimes can be the hardest part.

Take care of yourself and feel better!

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Awww, celiac3270!

I am glad it is over with and maybe you will start feeling betterfrom the procedure.

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Thank you :D ....just vomited, but cramping and nausea are now gone....it's 9:06 and I have to go study for two tests.....thanks

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Hey, celiac3270. Just take it easy and rest now. Let us know what the results are.

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Hi celiac3270. I'm glad it's over as well. will be interesting to see what they find out. Never heard of just red spots all over the stomache. As one who had the stomache flue comming out both ends 24/7 for 3 weeks at a time every year growing up I DO HOPE you'll FEEL BETTER SOON!!!!!!!!!!!!!!!!!! ;)

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Thanks, everyone. I got my results! And I haven't been sick since the biopsy and that was from the anysthesia (yay! knock-on-wood). The doctor just called and said that:

- The villi are looking good! :D Healed and grown back

- No additional intolerances or allergies. :D

- Stay away from complex sugars and tomato sauce just to be safe, since I've been doing better without them.

- No ulcers

- No cyclic vomiting, cause the symptoms had been coming every few days instead of once a week -- very good.

- It's just a matter of a little more time. It's like a car at a high speed. The gluten-free diet puts the brakes on, but it still takes a little while to stop completely. I'm finally coming to that stop.

- The gluten-free DIET IS WORKING!

-celiac3270

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Just couldn't resist a chance to talk with the famous celiac3270. My name is Barbara and I have been lurking around the boards for a few weeks now. I just did the complete Enterolab thing today and sent it off. I have been eating gluten-free for about 6 weeks now and am just now thinking it is working. I had such tummy tenderness and pains in my stomach at times and that is just now going away. I have a granddaughter that is six who has confirmed celiac disease....she was so sick when she was one and just a healthy little specimen now. Her folks are very vigilant about what she eats and she is so brilliant about it too. Her mom is the one who suggested that I might go gluten-free and be tested because of some of the problems that I am having. I did have a blood test at the doctor's office which came back negative, but I certainly don't trust that. I have a son with ADD and I have fibromyalgia and I am convinced that there can be a connection between the two. I also think I may have a lactose intolerance as well as a gluten intolerance. I just don't want to get celiac disease so I think I will eat gluten-free to prevent that. I anxiously await the results of the Enterolab test....I bought the good one with the gene tests too.....hope I am not a sap. I did hear of a lot of people on these boards that used that lab before I went ahead and used them. I am the cook in our own restaurant which presents it's own challenges, but now I don't do any "picking" because all that food is "tainted"!!!!!!!! I do have some fries, occasionally, the day the oil is changed and before anything else is cooked in it....for a little treat. And here is the best thing, I am losing weight. My body really seems to like this way of eating. Before I was such a carboholic and now I just don't crave food that much....I am so much better in control of my eating habits and eating healthier. Best wishes to you, celiac3270, on your testing. I will keep up with you and this board. I am 59 years old and they say that fibro and gluten intolerance can set in during these years....Barbara

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congrats on the fabulous results! :-)

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Wow! That's WONDERFUL!!! I'm so excited for your good news -- and no new allergies, too! A good day, indeed.....

Joanna

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Hey celiac3270!

That is amazing news!!! I had a really rough day today so hearing some good news lifted my spirits a bit!!! I am so happy for you!

One day at a time, and slowly but surely the gluten-free diet will heal your body.....

Karen

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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