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More Questions And More Tests

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So I jumped the gun posting my first post in the post-diagnosis category, so I will put this one in the right spot. :D So...I was supposed to wait until Monday to hear back from the doctor but someone cancelled so they let me come in today. I was all prepared to have them tell me it is Celiac, but the doctor is not convinced. My blood test was negative, and the endoscopy results looked good from my stomach. But he said that the biopsy of my small bowel reflected inflammation, which could be from Celiac. He is not at all convinced because of the blood test, but I had blood taken today to see if I have any of the genetic markers. If I do, he said that he wants to do a repeat endoscopy and do more samples from my small bowel (I think they may have only taken one sample before). And in the meantime he wants me to also go and get a HIDA scan for the gallbladder. And I also scheduled food allergy testing....So I shouldn't hear back from all this until the 31st...at which time I may or may not have to schedule another endoscopy. Soo.....any thoughts on all this? Can the small bowel be inflamed just by a gluten intollerance? Or are there other reasons it could be inflamed? I asked what else could cause inflammation and he didn't answer me. Also, how does one find out if they are lactose intolerant? Is there a test for that?

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So if anyone has any answers to my above post, please let me know. Also I have new annoying symptoms. I have an almost constant muscle twitch (not painful just annoying) right inbetween my ribs under the sternum (I think above the pancreas near the gallbladder). It goes on for hours a day probably generally every couple seconds or so (sometimes more sometimes less). I have had little muscle spasms a lot in the past, but this has been going on since Sunday and it is getting very annoying. I have taken multivitamins but again am not sure my body is really absorbing it. You can actually see the twitch on my skin and through my shirt sometimes.

And still having pain under my right rib at times too...

And the new symptom that started on Monday is a rash on my face and a few other spots on my body that looks just like the pictures I saw for DH. I have pretty good skin and never get skin rashes so it is quite strange. It itches, but hurts to scratch. I am also just overall itchy all the time, mostly on my stomach and face and arms some.

I am starting to feel crazy with all these symptoms because I am not one to complain and never really get sick. I don't know if I can wait a whole week to get my HIDA scan and allergy testing!!

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First do not go off a regular gluten diet until all testing is done. Celiac can have negative effects on the gallbladder so don't be in a rush to have it removed as the issues may clear up on the diet. If you can find a good derm who is knowledgeable about DH you may want to have them do a biopsy to see if the rash is DH. A diagnosis of DH is a diagnosis of celiac so you would need no further celiac testing if that is the case. The biopsy needs to be taken from beside the lesions not the lesions themselves and the examination of the biopsy needs to be looking for DH.

I am sorry you are feeling so very badly. No matter what the test results do a strict trial of the diet after all your testing is done as false negatives are not uncommon. It's too bad your doctor didn't do enough biopsies of the areas he needed to biopsy the first time around.

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Can the small bowel be inflamed just by a gluten intollerance? Or are there other reasons it could be inflamed? I asked what else could cause inflammation and he didn't answer me. Also, how does one find out if they are lactose intolerant? Is there a test for that?

The answer to those first two questions is ... yes and yes. Inflamation could be caused by NCGS (non-celiac gluten sensitivity) or there are other things that could be going on.

There is some breath test thing they can do (used to do) but it was a day long test, and very costly for doctors to perform, apparently, so I don't think they do it much anymore. At least that's what my doctor told me... but someone else may have different info for you on that. You can pretty much just eliminate dairy completely (including box mixes with milk powder in it, etc) for a week, and then reintroduce it. If you feel better when it is removed from your diet, and feel awful again when you reintroduce it,that should give you your answer about the lactose intolerance.

Hope you feel better real soon, and like raven said... maybe you could get a diagnosis by having the tissue next to the rash biopsied. Good Luck!

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Thank you both for your comments! I am hopeful I can hang on and wait until the testing on Wednesday. I was having a lot of nausea this afternoon and had to come home from work and just sleep for 2 hrs before forcing myself to get up. (When you have kids you can't sleep all day and they were coming home with dad). They know I am not feeling great but I am trying to not have them be worried or anything. I would go to a dermatologist, but I am betting I will get my blood results back sooner of the gene testing and if it is positive will just schedule an endoscopy for as soon as they can do it. I really want to start the gluten free to see if helps. It's killing me but I am still trying to eat my carbs so I have it in my system for the endoscopy. Such a strange stuff to be putting things in your body that don't make you feel good at all. Although sometimes when I wake up I avoid eating for a while and that is usually the best I feel all day. Still sick and like I have a brick in my stomach...but not as much pain and nausea. Will fill you all in soon as soon as I get some answers!

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Thank you both for your comments! I am hopeful I can hang on and wait until the testing on Wednesday. I was having a lot of nausea this afternoon and had to come home from work and just sleep for 2 hrs before forcing myself to get up. (When you have kids you can't sleep all day and they were coming home with dad). They know I am not feeling great but I am trying to not have them be worried or anything. I would go to a dermatologist, but I am betting I will get my blood results back sooner of the gene testing and if it is positive will just schedule an endoscopy for as soon as they can do it. I really want to start the gluten free to see if helps. It's killing me but I am still trying to eat my carbs so I have it in my system for the endoscopy. Such a strange stuff to be putting things in your body that don't make you feel good at all. Although sometimes when I wake up I avoid eating for a while and that is usually the best I feel all day. Still sick and like I have a brick in my stomach...but not as much pain and nausea. Will fill you all in soon as soon as I get some answers!

I'm sorry you're not feeling well goodnews... I know its hard! :( I had to comment on your post...because I have been telling my husband for a couple of weeks off and on... "I feel like I have a brick in my stomach!" I don't think I've read anyone else saying that... it sort of makes me feel better, seeing that I'm not crazy and someone else feels that, too! Sorry you have to feel it, though. Hope you feel better really soon! :)

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Lol Ms. curious, glad to see I am not the only one with a brick...well not that I want others to feel the same but still good to not be the only one. Thanks for the well wishes! I am feeling a little better today (although I just ate so may not be pretty soon...although it did happen to be a gluten free meal). My latest (since Sunday) annoying symptom is a twitch/muscle spasm I have a little under my sternum and around my right rib. It is SOOO annoying but not painful. It goes off an on for several hours each day... Maybe more as it is almost constant. I called the gastro dr. and left a message just to mention it's not big deal as I have a HIDA scan scheduled for next wed. He called back and said to put heat on it and if it doesn't help to see my PCP. Not too helpful. And I don't really want to put heat accross my chest. I would bet that it somehow related to vitamin deficiencies or something. I have gotten little twitches a lot before, but not lasting this long in such a peculiar location. You can actually see the movement on my skin and even through my shirt. Very strange.

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Lol Ms. curious, glad to see I am not the only one with a brick...well not that I want others to feel the same but still good to not be the only one. Thanks for the well wishes! I am feeling a little better today (although I just ate so may not be pretty soon...although it did happen to be a gluten free meal). My latest (since Sunday) annoying symptom is a twitch/muscle spasm I have a little under my sternum and around my right rib. It is SOOO annoying but not painful. It goes off an on for several hours each day... Maybe more as it is almost constant. I called the gastro dr. and left a message just to mention it's not big deal as I have a HIDA scan scheduled for next wed. He called back and said to put heat on it and if it doesn't help to see my PCP. Not too helpful. And I don't really want to put heat accross my chest. I would bet that it somehow related to vitamin deficiencies or something. I have gotten little twitches a lot before, but not lasting this long in such a peculiar location. You can actually see the movement on my skin and even through my shirt. Very strange.

Yeah, about 2 years ago, I had a twitch near my eye... sort of under it off to the side that you could see the skin move and it was SOOOO annoying. I have no idea why I had it... never had it before that. It lasted off an on for about 6 months or so... then vanished. Thankfully, that was the end of it... not sure if it was related to vitamin deficiency at all, but it was weird. Glad it went away! Hopefully, yours will too.

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