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Showing results for tags 'positive ttg'.
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Hello everyone. Brand new to the Celiac scene personally and this is my first post here. I just recently had my tTg-IgA drawn and it came back at 11 U/mL. Standard range 0-3, weak positive 4-10 and 11 or greater positive. A little background: My grandfather was diagnosed late in life (in his 70's) with Dermatitis Herpetiformis via skin biopsy. His physician put him on Dapsone and told him to try to avoid gluten. My grandfather wasn't ever told he had to be strictly gluten free for life. He tried to avoid gluten for a period of time, along with the Dapsone and his DH got better. It sounds like things had calmed down and he was "avoiding" gluten so his doctor took him off Dapsone. Turns out my grandfather didn't realize how important it was for him to be strictly gluten free because he was never educated properly. According to my grandmother, (which is where I got all of this information) he was told he did not have Celiac disease but he was just allergic to wheat. After this, my grandfather decided it was too difficult to avoid gluten in his diet and the doctor agreed to just put him back on Dapsone so he could consume gluten without having all of the DH flare-ups. Eventually this downward spiral led to him having emergency surgical exploration ending up with small-bowel resection due to complications with his small intestines (I'm speculating this is Celiac related but not 100% positive). Throughout the next several years his health continued to rapidly deteriorate to the point he became extremely frail and was using a walker. Fast forward to the day before he passed away. He had fallen and sustained a fractured hip. He had surgical repair that night which eventually led to him being admitted to the ICU due to inability to keep his blood pressure stable. That night, despite all of the ICU IV blood pressure support medications they had him on he passed away. Since it was such a sudden and unexplained death they offered my grandmother an autopsy and she agreed. In the report, according to my grandmother, they put that he had a chronic adrenal gland issue which ended up causing his death. I investigated this some online and I found there was a link between Addison's Disease and Celiac Disease. From what it sounds like to me he went into an Addisonian crisis and led to his death. I started with that story because I am utterly shocked at how little education my grandfather received regarding his diagnosis of DH and to be told he just has a wheat allergy and needs to avoid gluten if possible. I found this website after I tested on the positive scale for tTg-IgA and started reading post after post absorbing as much information as possible. I came to be tested after my younger brother mentioned to me he had been tested for Celiac disease and had a "weak positive" test result on tTg-IgA and was told to go gluten free immediately after that test. He was not given a diagnosis or recommended GI consultation for EGD biopsy. (I have since shared the information I have learned but he already went gluten free and had resolution to most of his symptoms and is not interested in EGD with biopsy or going back on gluten for that matter!). I started to put the pieces together after he told me about his "weak positive" result and started thinking about all of the weird symptoms I had experienced off and on throughout my 33 years of life. As a child I oftentimes would throw up for no reason after eating breakfast or have diarrhea before school. My mom always attributed it to nerves about going to school. She also told me that I threw up at school a lot early on and would be sent to the nurses office but again it was attributed to nerves and apparently I would say things like "I'm afraid my parents won't pick me up after school." I had a lot of childhood anxieties and worries that other children didn't have and my parents thought I was just a sensitive child. Eventually, all of the gastric concerns triggered a pediatric GI consultation. I had an EGD and some form of barium study (as I remember the distinct white poo it produced later). I was just a small child at the time this was happening and now that I'm older I asked my mom if she remembers what they were looking for or what they told her and she can't remember any of the test results. She said they thought it was just stress related. As a child I also developed this strange rash on my hands that presented as small, clear blister-like bumps with a tiny dot in the middle of them and would be on my palms and in between my fingers. The inside of the finger bumps I remember would get kind of raw, itchy and would crust over and the bumps on my palms would just itch a lot. Eventually it just went away and would come and go randomly up until early adulthood. I remember distinctly the last time I had this rash on my hands. I was in California at the beach in my early 20's and I picked up a large bull kelp seaweed and was swinging it around. Later that night I had that rash randomly appear after not having that rash on my hands for years and years. In my early adult life I had 4 different occasions of kidney stones. I know this is a very common thing to happen to people but also found information that said Celiac individuals have a higher incidence of these due to malabsorption issues (correct me if I'm wrong). The biggest symptoms I have been experiencing since 2017, after I just finished up a year long divorce. I started having the most intense anal irritation....I mean this was bad. It was itchy, raw, burning and there was blood whenever I would wipe. This went on for a year until 2018 when I started having other symptoms. I went to my primary doctor and told him I am completely wiped out and feeling fatigued to the point it was very noticeable to me (told me it was stress from going through divorce). I had this "fuzzy" feeling like I was walking around kind of dazed all the time. I also reported having joint pain in my thumb, hip, knee and ankle. They weren't all painful at the same time and the pain would sometimes be there and sometimes be fine. I reported that I had developed a red, bumpy and very itchy rash on my arm that eventually went away and then went to my back. After my back rash went away it moved to my abdomen where it stayed for months and was present at the time of my appointment. I also told him about the severe anal discomfort. He said I had anal fissures and gave me some steroid suppositories. He checked labs for rheumatoid arthritis and lupus which were both negative. He also tested my testosterone which was slightly elevated and checked my leutinizing hormone and follicle stimulating hormone, which were both high. Nothing ever came of these symptoms or tests and I kind of just internalized everything and thought this must just be how I am and I am getting a little bit older now. I continued to have these symptoms off and on until the present time just thinking this is the way I was built. I also always wondered what those bright white areas on four of my teeth were (enamel defects!). My last primary care check up (May 2022) I told the doctor I was feeling really weird and that I felt like the normal everyday things that didn't stress me out before are now stressing me out a lot and getting me down. I told him I was very irritable all of the time for no reason at all. I could have all kinds of great things happening in my life and I was just irritated and moody all of the time (to the point my new wife was noticing a change in character for me and mentioned it). He asked if I wanted to be put on some meds and I told him I didn't want them. I have also been having almost daily minor, annoying headaches almost every single day for several months now. Fast forward to September 2022 and this is the point I put the pieces together and asked my doctor to be screened for Celiac disease. I was given a formal GI referral after my positive test and I am set to go to that appointment today at 3:00 pm. I am seeing a nurse practitioner for the consult due to long wait time to see a doctor. I was assured the NP will be able to order the EGD and will take my history, etc. I'm very apprehensive about the coming EGD because I'm worried they won't be able to see what they need to see or won't biopsy enough sites to give an actual diagnosis. I guess I'm so worried about that because my tTg-IgA was only an 11 U/mL and was just on the cusp of being positive but still considered positive. If my result was much higher I would be less apprehensive I guess. Technically my tTg-IgA is close to 4 times the upper normal level for my lab. I only had my tTg-IgA drawn and didn't know at the time I asked for testing about all of the other things I should have asked for. Should I ask for more celiac tests i.e DGP IGA/IGG, total IGA at my GI consultation today or is the tTg-IgA enough since it was positive? Should I ask to be screened for vitamin deficiencies and what are the most important ones to ask for? Is it rude to ask them how many biopsies they take and is it okay to be pushy and tell them I want 4-6 biopsies?? Thank you for allowing me to tell my story! Sorry it ended up being so long and I would greatly appreciate any feedback, recommendations, etc. if you have time to get through to the end of my novel!! Take care.