Tests, Tests, And More Tests

[kujhawkrulz]

Want the biggest laugh of your entire life..............IVERMECTIN oral for the rash.  His rationale was...I don't know what this rash is caused from so we'll just start by taking this and go from there.  OMG!!!  I don't have scabies.  I live with 9 other people.  Would you not think that I would've passed it around since I've had it for 5 months.  His response was....well you'd think so but I really don't know what is wrong with you.  Well then just say so and move on, don't just prescribe me something to feel like you did something for me.

 

I just about started "moo'ing" like a cow in the office at him in response but I kept my cool until I got to the car.  I'm done!!!  Thursday is the colonoscopy and then small bowel capsule if they don't find anything wrong with my colon.  If they find inflammation from the small bowel capsule they did say they would do the endoscopy.  

 

To top it all off....the dang biopsy they did next to the lesion was just a general biopsy, not to test for DH.  The lab results came back as dermatitis.  Well no duh!!  I've known that was inflamed this entire time, but did he test for IgA----that would be a resounding NO!!

 

So besides wasting my time, I have to pay cash money for all these tests.  I am not happy that I didn't get to order what was done either.  When I left the office I thought he was testing for DH and he wasn't this entire time.  I'm livid!!

[squirmingitch]

I'm livid too!!!!!!!!!!!!!!!!!!!!!!!! Oh man! Not again!!!!! This kind of thing has happened before. I just thought this time he knew what the heck he was doing. Okay, so now I'm thinking when you get the "celiac serum panel" back it won't have been the "celiac serum panel" - at least not the complete panel.

Ohhhhhhhhhhhhhh I am SOOOOOOOOOOOOOOO sorry. 

Time after time, after time, after time, after time this kind of thing has happened. WHY can't they get it right???!!!! It's NOT rocket science. All they have to do is google it for Pete's sake!!!! 

 

I wish you would have mooed for him. That would have been hilarious. 

 

Crimeny! You TOLD him what was wrong with you! He didn't listen. GRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR!!!!!!!!!!!!!!!!!!!!!!!!

 

Well, I'll tell you what then. After Thursday you can give the gluten free diet a real strict go of it for a minimum of 6 months & see what happens. The doctors certainly aren't helping you so you have to go it on your own.

 

 

HUGE ((((((((((((((((((((((((((HUGS))))))))))))))))))))))))))))))))))

[kujhawkrulz]

I will go it on my own.  It just makes sense....I have this horrible rash that burns, itches, and doesn't seem to be going anywhere soon and I've tried every topical and some internal remedies that are not working.  I'm not the one that even brought up celiacs, that came from the initial testing that was done.  The problem is that the initial blood test was not the FULL panel.  

 

Anyways, I'll update after Thursday's lovely experience.  I have to spend time finishing up my CEU's for my license  

[frieze]

see if the lab kept the spec. and they can retest?

[kujhawkrulz]

Ivermectin 21 mg PO daily then repeat in 14 days.  Rash is still raging, even worse since I had the colonoscopy.  As for the colonoscopy, not good, the GI doctor couldn't get the camera to go through he told me that I have a redundant and fixed colon, however he did say that I have diverticulosis, internal hemorrhoids, and they took a biopsy to test for microscopic colitis.  So that means, bowel prep again in 10 days for a barium enema.  That also means that I can not do a small bowel capsule.  He said he was afraid with the bowel narrowing that it would not pass.  I asked about the small bowel endoscopy and he said we would worry about that when we got there.  I spent the last 3 days on the toilet, tired, miserable and scratching every itch on my body.

 

Oh the really fun thing told to me....take Metamucil to bulk your bowels....NOT!!!

[ravenwoodglass]

Ivermectin 21 mg PO daily then repeat in 14 days.  Rash is still raging, even worse since I had the colonoscopy.  As for the colonoscopy, not good, the GI doctor couldn't get the camera to go through he told me that I have a redundant and fixed colon, however he did say that I have diverticulosis, internal hemorrhoids, and they took a biopsy to test for microscopic colitis.  So that means, bowel prep again in 10 days for a barium enema.  That also means that I can not do a small bowel capsule.  He said he was afraid with the bowel narrowing that it would not pass.  I asked about the small bowel endoscopy and he said we would worry about that when we got there.  I spent the last 3 days on the toilet, tired, miserable and scratching every itch on my body.

 

Oh the really fun thing told to me....take Metamucil to bulk your bowels....NOT!!!

My gosh do you have the same doctors I did!  Your results from the lower scope sound just like mine as do many of your symptoms so I know how much you are suffering. I have been on this board for almost 13 years and I am going to say something I have never said before.... IMHO you should simply go gluten free. Going gluten free is not going to impact testing for anything other than celiac so if you do have something else going on being gluten free is not going to keep the doctors from figuring it out.  I am so sorry you are having to go through all this.

[kujhawkrulz]

I have been gluten free since the colonoscopy.....very surprising that I am not bloating, not having the horrible gas pains, not doubled up on the toilet feeling like I could pass out at any given moment.  My stool is actually starting to take a little bit of form as well.  Surprise, surprise, surprise!!!

 

My mother who is also a nurse told me....you told them what was wrong with you when you went in....they aren't going to be told by an RN what is wrong....just ticks me off but you know, you are right I don't need the diagnosis, what I did want was some dapsone to help with the itch since I am not allergic to sulfa.  Instead I got Ivermectin even though he said he didn't feel it was scabies.  

 

For God's sakes, will the doctor's EVER listen to me, this is my body and there is something horribly wrong with it.

 

Now for the gluten free diet....I've read every label and so far I've been able to make some pretty good food.  I'm scared I'm going to get glutened, so I've not even touched anyone else's food that are still eating gluten, however they've eaten meals that I've prepared that are gluten free and ate well.  I read the newbie section so I feel I am a lot more prepared then had I not read it so I do highly recommend it for anyone that is going gluten free.  Bravo to all of you!!!

 

One problem that I do want to address....when having the colonoscopy they place heart monitor patches over areas that were open on my skin and OMG I'm raging with itches, small blisters and now oozing skin.  I've taken cold baths, washed the areas off with witch hazel, applied tea tree oil and eucerin cream.  Is there anything else I can do, I am almost to the point of making and ER visit

[cyclinglady]

I have been gluten free since the colonoscopy.....very surprising that I am not bloating, not having the horrible gas pains, not doubled up on the toilet feeling like I could pass out at any given moment.  My stool is actually starting to take a little bit of form as well.  Surprise, surprise, surprise!!!

 

My mother who is also a nurse told me....you told them what was wrong with you when you went in....they aren't going to be told by an RN what is wrong....just ticks me off but you know, you are right I don't need the diagnosis, what I did want was some dapsone to help with the itch since I am not allergic to sulfa.  Instead I got Ivermectin even though he said he didn't feel it was scabies.  

 

For God's sakes, will the doctor's EVER listen to me, this is my body and there is something horribly wrong with it.

 

Now for the gluten free diet....I've read every label and so far I've been able to make some pretty good food.  I'm scared I'm going to get glutened, so I've not even touched anyone else's food that are still eating gluten, however they've eaten meals that I've prepared that are gluten free and ate well.  I read the newbie section so I feel I am a lot more prepared then had I not read it so I do highly recommend it for anyone that is going gluten free.  Bravo to all of you!!!

 

One problem that I do want to address....when having the colonoscopy they place heart monitor patches over areas that were open on my skin and OMG I'm raging with itches, small blisters and now oozing skin.  I've taken cold baths, washed the areas off with witch hazel, applied tea tree oil and eucerin cream.  Is there anything else I can do, I am almost to the point of making and ER visit

Have you tried an antihistamine? Sounds like an allergic reaction.

[ravenwoodglass]

You know I had the same thing happen when I had a heart stress test.  I have allergies to some adhesives and you may also. If you go to have another colonoscopy done make sure the doctor knows that happened. Who knows you may be healing enough so you don't need another scope and can cancel or postpone.

Glad to hear that you are having some success with the diet. You are lucky some of the GI stuff is already resolving. I was also and was amazed how quickly the D stopped. Other issues took much longer though.

Do drop iodine for a little bit until your lesions heal as it can keep the antibodies active in the skin. I found cool compresses were the only thing that really helped the itch and that itch can really drive ya nuts so I hope the itch resolves soon for you. By the way, as you may know already, Dapsone is a pretty toxic drug and with the caliber of your 'doctors' I don't know if they could have been trusted to monitor your liver function while you were on it. Since celiac can also impact liver function you may be lucky they wouldn't give it to you.

[kujhawkrulz]

You know I had the same thing happen when I had a heart stress test.  I have allergies to some adhesives and you may also. If you go to have another colonoscopy done make sure the doctor knows that happened. Who knows you may be healing enough so you don't need another scope and can cancel or postpone.

Glad to hear that you are having some success with the diet. You are lucky some of the GI stuff is already resolving. I was also and was amazed how quickly the D stopped. Other issues took much longer though.

Do drop iodine for a little bit until your lesions heal as it can keep the antibodies active in the skin. I found cool compresses were the only thing that really helped the itch and that itch can really drive ya nuts so I hope the itch resolves soon for you. By the way, as you may know already, Dapsone is a pretty toxic drug and with the caliber of your 'doctors' I don't know if they could have been trusted to monitor your liver function while you were on it. Since celiac can also impact liver function you may be lucky they wouldn't give it to you.

That is strange that you mention liver function.

 

I had several, several blood tests back in 2010 where my ALT and AST were elevated and they kept up to the point my doctor ran tests for hepatitis which were all negative and since then I've not seen a rise in them.  Hmmmm...makes me think!!!

[kujhawkrulz]

Have you tried an antihistamine? Sounds like an allergic reaction.

Yes, I have hydroxyzine and benadryl on board, none of which keeps me from itching.