Jump to content


Advanced Members
  • Content Count

  • Joined

  • Last visited

Community Reputation

0 Neutral

1 Follower

About kujhawkrulz

  • Rank
    Top Contributor
  1. Yes, I have hydroxyzine and benadryl on board, none of which keeps me from itching.
  2. 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!!!
  3. 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
  4. 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!!!
  5. 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
  6. 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!!
  7. I got back to see the Air Force doctor on the 17th the get the sutures out I'll hope and pray something from the biopsy is conclusive. Anyways, feeling horrible tonight, not a lot of energy to do much. Thanks for your prayers and hugs!!
  8. I just returned home. Not sure what to think. GI specialist stated "it can't be Celiac's because your TTG is not elevated." Okay so here's what is being done. Colonoscopy on 8/20/15 at 4:30 pm followed up by a small bowel capsule if he does not find anything on the colonoscopy. I was going to have to wait until September until they found out I've had diarrhea for 5 months continuous and that I'm losing weight, which I've lost 2 more pounds. Anyways, blah!!!! I guess I should be happy they are doing something and not just telling me I'm crazy and to get out of their office.
  9. The clinic just called. The GI specialist is coming in to a town 25 miles from me. My appt is tomorrow morning and 9:30 am, I have to be there by 8:45 am to do paperwork. I have never had anything move this fast in my life. I'm very astonished, but I think the doctor must want me seen quickly. Thanks for all the hugs and prayers, they are working
  10. I'm bloating something fierce. I haven't eaten at Taco Bell in months. Yes, I feel fortunate and very relieved tonight, all except the abdominal pain, but this too shall pass. Thanks for everything, and yes the biopsy came as a total surprise. He came in the room where I was and said "What do you think about doing a biopsy of a lesion." I actually started crying a little bit and told him that I didn't want to live like this the rest of my life and hoped he could put the pieces together and figure out why I'm always so sick. He said that he would do the best that he could. I'm happy.
  11. Sorry for taking so long, I purposely ate at taco bell today so that I could make sure I was really glutened good and I've been sick since, laying around with a horrible gut ache. I have to do a 24 hour stool collection for more testing. This doctor I'm going to now, which I was turned over to by the PA I was using, is really nice and actually he told me today that he feels like I do have celiac disease and DH and would like to help end my suffering. Actually, I was scheduled for the EGD and Colonoscopy after a consult on the 24th and he called and said that it was too long to wait and found a GI doctor coming to another area hospital this week and personally called me to ask if I would rather go there instead of waiting until the 24th to be seen by a local doctor. I agreed and his office is supposed to call me back with the appointment time as soon as they get it. I've lost 4 pounds since I was at the doctor on Friday and blood pressure was 160/100 upon arriving which he was not happy about. I've never had a real issue with BP. The doctor did say that he was not going to worry about my TSH until we got the bowel problems straightened out because he wanted to focus on one thing at a time. Plus, he said that he wanted to re-run the test along with others and a complete panel as I showed him. He is very concerned he told me, so I guess that for now I'm going to run with what he's doing and try to find something out. So, as it goes the punch biopsy is done and I have 2 little stitches that have to come out next Monday. Yes he did it NEXT to an active lesion, under my arm that was blistered and itching like mad. I am a happy camper about how the appointment turned out today. He was armed with his laptop and took a very thorough history. He told me that he was an Air Force doctor before starting at the clinic, I've been to the clinic just not to him and it worked out well for me as of today I'm not sure how long the punch biopsy is going to take to get back but soon I hope. I was really pleased to hear him say "keep eating gluten until we get all this testing done." Thanks for the hugs and well wishes it means a lot to me.
  12. Trying to make light of all of this is not too much fun, but I swear to you I will make sure I eat glazed doughnuts for a week before the test. I just really want some closure, this is horrible. I finally slept for 5 hours last night so I'm ready for this appointment this morning. I'm printing the tests that need to be run and want to tell all of you that have commented on this post how much I really appreciate you taking the time to lend me a hand. When I was in nursing school I had a professor tell me that she thought I had "wheat belly" and then again while taking a Master Gardeners class, a gluten sensitive classmate told me that she had the same symptoms that I did. I would stink up the entire basement if I decided to eat in class, so usually I refrained from doing so. I have never been one that could really drink any beer without bowel related problems. When living in California, I was told that was sensitive to lactose so I do not drink milk. The ongoing joke around here is give me milk if I need to go and its guaranteed results in 30 minutes or less. I believe the lack of calcium is causing the hump at the base of my neck and I do remember my grandmother saying that she could drink goat's milk without bowel problems but not cow's milk. I lived with her when I was a senior in high school and drank goat's milk as well without near the symptoms. I'm a ticking time bomb when it comes to my mouth at times, and I'm not talking about lesions here or anything, I'm talking about the short fuse I have and I let people have it verbally without even thinking. Afterwards, I find myself apologizing for speaking my mind, not that I wasn't correct in my statement, rather the poor delivery, sometimes just down right mean. As of late, I find myself really ticked off at any doctor that has ever touched me and didn't listen to what I was telling them, but you know I really can't be that insensitive, because like I said I'm an RN and all that we learned about celiac disease in school was to refrain from wheat. The lesions that itch. I looked at your photos and mine are not that severe but, they are symmetrical in presentation and itch like crazy. The itch comes first and then papules that are fluid filled and I end up itching the top of them off. The only reason I started using tea tree oil is d/t the fact that I figured I better use something to keep from getting impetigo. I've had one tested before on my coccyx because I thought I had herpes and the doctor told me that it came back negative and asked me if I thought it could be poison ivy or something that I had gotten in to as we spent a lot of time outside. Up until recently I had been outside, but I find if I am in the heat the rash leaves me digging and in complete misery. My son's tell me how proud they are that I can pass gas better than any man they know...which I just try to laugh off but actually it is embarrassing. My guts rumble non-stop, and since April if I try to pass gas I am putting myself at horrible risk of crapping my pants in which I have multiple times I just want it to stop and to have a life free from these symptoms. I'm going to the doctor soon, I just hope and pray that he listens to me without thinking I'm some kind of lunatic!!! Thank you so much, you really can't understand how much this means to me.
  13. Ravenwoodglass, Your reply is very insightful, I had just talked with my mother yesterday as she was the one who drove me to Rochester to see the neurologist asking her if she thought maybe the lesions had anything to do with gluten. I remember explicitly telling them and answering every questionnaire about my bowel related problems and having been hospitalized 2 times with them and multiple trips to the ER when I would bloat up to the point I could barely walk and they never once talked with me about the lesions being related to anything but possible MS. I had two MRI's of my brain in Kansas and 1 at the Mayo Clinic in which all of them show them in the same locations, my symptoms included slurred speech, disorientation, severe fatigue, and tremors. My exact words to the neurologist in KS and MN is that I constantly felt like I was in a brain fog and couldn't think. To be honest with you, after going through this for over a month I actually felt like I was dying and thought I possibly had a tumor or something because of the tremors and made my living will putting my brother in charge if I wasn't able to make decisions. The bowel troubles were still going on as I explicitly remember eating at a really good restaurant down the street from our motel and NOT making it back in time and being absolutely mortified because I smelled horrible I spent most of my time in public restaurants flushing so no one can hear me or smell me because its just absolutely disgusting as I am sure a lot on this forum know fully well. We recently went to the KC Royals and I actually took a long an adult brief just in case I decided to eat. It is inevitable, if I eat I will be spending time on the toilet, lots of time, and I'm really tired of it!! Tomorrow, I will see the doctor and I'm going to insist on the endoscopy with biopsy, he did mention that if my Celiac test came back negative, lol, he wanted to do a colonoscopy. I guess he can do both or I can find another doctor. I will read about the relation to the lesions on the brain and gluten and take that with me tomorrow. I really appreciate all that you have posted. Thanks for the encouragement for getting the tests done and I look forward to doing a lot of research on here and getting to know those of you whom post regularly a lot better.
  14. IgA, 161 Endomysial Antibody IgA, Negative tTG IgA, <2 I turn 44 in 8 days and I'm supposed to be leaving to travel by the 24th of this month in another state, I just wanted some answers before I left for work I definitely do not want to be trying to work and itching all over. Benadryl doesn't cut it neither did any of the too numerous to mention, creams that I've tried since March and TAC cream or Nystatin cream the doctor prescribed that actually made the rash much worse. I stopped taking NSAIDs thanks to the forum and I'm going to cut iodine too. I know that running to the toilet sucks but the rash is driving me batsh** insane My sister has Hashimoto's Thyroiditis and on my mother's side of the family there are multiple family members with autoimmune disorders, including RA, lupus, and Chron's. I am not aware of anyone that has Celiac's but I know that my grandmother died of lymphoma as well as her sisters, everyone of them. My mother has bowel problems as well but told me that she wasn't giving up bread to fix them at her age, which is her deal but she stinks up the entire house too if you get my drift. She is always running to the bathroom to make it on time, but its her body and her life, my dad complains that she sleeps too much and has no energy, I did find out that my thyroid medications need to be adjusted, I told the doctor that's probably d/t the fact that most of the time I see the Metformin and other meds in the bottom of the toilet along with anything I eat. Actually I'm on 88 mcg of synthroid and my TSH has never been this far out of whack, plus my K+ is slightly low along with the other electrolytes because I can't keep anything in my gut long enough....I live in a very rural area and the doctor I talked with didn't even know what DH was until I enlightened him and he left long enough to bring it up on his tablet because I caught him when I left the room to use the toilet for the sample he requested. Anyways, thank you for the quick response, I'm going to continue to read here and I guess I'll find out more tomorrow.
  15. I am a registered nurse and have spent most of my adult life taking care of others but for the passed 5 months I have been very sick. Actually for most of my life I have been the child that caught every weird childhood disease and this even carried over into my adult life. When I was a child I had pityriasis, the 5th disease and seborrhea psoriasis. After obtaining my LPN I had the mumps and after I became an RN in 2010 I had scarletina. Any infection going around you can be guaranteed I will get it. I spent the entire month of October with either vomiting or coughing, I have since quit smoking which my PCP recommended but I still catch everything. I even had some brain lesions that I was sent to the Mayo clinic to be r/o for multiple sclerosis. The main problem that I have is severe bloating and diarrhea in which I have been hospitalized 2 times and told it was IBS and that I needed to take an anti-depressant and not get worked up over life. I've had 3 steroid injections in my back, 2 in each knee and 2 in my right shoulder and every MRI that has been done on me shows fluid in my joints that is not supposed to be there indicating according to my specialist that I have an autoimmune disorder which he tested me for Rheumatoid Arthritis and Lupus which both came back negative. I now have severe bloating, watery stools that stinch up the entire house and most of the time I can't finish eating before I am on the toilet. I've lost over 20 pounds since the end of April, lack motivation, energy and any desire to participate in life's happenings. I really feel sick. The doctor did blood tests for Celiac's disease that he told me today are negative. Nothing works for the rash except cold baths, tea tree oil, and Eucerin. My potassium level is low, my other electrolytes are on the low side of normal. For the rash I have tried everything imaginable including 2 rounds of Permetherin because my PCP suspected I had scabies which never made since to me since I have a 1 year old that I am in contact with constantly that has no signs of such a thing. The PCP won't do anything for the rash, like Dapsone unless the blood tests were positive and since they aren't they sent me home crying and in desperation. I don't sleep most nights because I stay up itching or on the toilet, or both usually. As I was leaving the PCP office today his PA told me to just go on a gluten free diet, that the only way I will know is to try it. I have another appointment at 9:30 tomorrow morning and I'm not sure how I'm going to handle the PCP, I just wish he could've seen me on my knees crying my eyes out when I got home feeling absolutely, positively, clueless of what to do to get better. I understand that I can have the endoscopy but insurance will not pay for it without positive blood tests and the cost is too high for me at this time to absorb financially. What to do, this is a very hard pill to swallow. Thanks for the forums, I've learned a lot in the few days that I've been reading. Squirmyitch you are a wealth of information and I really appreciate the time you have spent on the DH forum. I have a lot to think about today, but I feel like I've been put in the position to just go completely gluten free and see where it leads my health. About how long did it take for you all to quit having the bowel symptoms once you did go gluten free?
  • Create New...