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Tyson Holly MD

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  1. Wondering if you had any follow up for us on this. My serotonin and gastrin levels just came back elevated but have yet to hear from GI what the next step is going to be. My genetic test was also positive(first positive test other than chronically elevated lymphocytes, elevated esr and crp, and electrolyte abnormalities but no real "celiac" tests were positive bc I refused to eat it ever again!), so perhaps he'll believe me this time that it's not all "stress and depression" (even though I am one of his colleagues). So frustrating. I too am vigilant about allergen free-none of seven common allergens plus some others we've discovered. But still having excruciating right upper quadrant pain and almost pure watery stools up to 15 times a day. Entocort may help a little but not much. Prednisone definitely helps but there are so many awful side effects. I've been going up and down on these for 7 months now w no remission. Also have to take narcotics and muscle relaxers which I hate, but keep me out of the hospital. To be honest I think there's a spectrum from intolerance to Crohns and if they can't get this under control, I'm headed for crohns. This week the ruq pain has been so severe it literally takes my breath away and I'm barely eating to prevent more pain (feels like pouring rubbing alcohol on a terrible road rash). Hopefully someone has had these results and can tell me if your MD blew them off or searched for a neuroendocrine secreting tumor. Thanks, Tyson Holly,MD
  2. I just spoke to the lawyer who is among the group processing the huge case up in NJ right now with the actor from " A Few Good Men ". This actor has a diagnosis of celiac and IBD, not crohns or UC. The lawyer was VERY interested in my case and the research out of the University of Chicago, ironically where I did my residency. Go here to see the recent press release from the University of Chicago. http://www.uchospitals.edu/news/2011/20110209-celiac-disease.html His name is Van Robichaux and his website is www.accutanenews.com. He is asking that any one who took accutane or its generics and later developed Celiac disease go to the website and register your case. it's too expensive to try one single case, such as mine, but they are very interested in getting a group if cases together. Not a class action, but 5-10 cases to be tried together. I know I am not unique in my experience. This could get the word out about this horrible connection. I am in no way affiliated with this law firm. I'm simply a doctor who took accutane during my residency training bc I had severe outbreaks at that time. I now know it was probably wheat related, but I was healthy still until after the accutane. Now I'm unable to do a job that I love and trained for my whole life. I KNOW if it's this easy to induce celiac with accutane in mice that Roche should have known but hid these side effects, causing immense pain and suffering for many of us. I spoke with five other law firms advertising on celiac sites and no one else could even spell celiac. They were only interested in Crohns or UC. If you have any questions, email me. Tysonholly@hotmail.com. And if you are a moderator, please help me spread the word about registering these cases. There is nothing in it for me except justice and education.
  3. Thanks for the warm welcome! I'm honored to be a part of such a smart, well informed, caring community and I know we can make this a well known disease! This is a tough question, and one that I'm currently grappling with. In the hospital, J ( my amazing fianc
  4. Hi Tyson Holly MD... I posted a question for you on your original post. ;)

  5. I just called these guys. Sounded like a high school or college intern who answers and takes information. He had no idea what celiac was and kept asking over and over if I had crohns or colitis. I hung up. Ridiculous. Don't waste your time.
  6. There is new research out of University of Chicago on 2/10/11 linking celiac and accutane. They were able to induce full blown disease in mice but only if they were ready susceptible. This happened to me, but I see it as a blessing. It forced my diagnosis. or else I could be like my dad, who's had miserable gi issues his whole life. Still mad at Roche (drug company) bc there's no way they didnt see this in clinical trials. Class action suits are starting. Google it.
  7. I am a traditional western medicine doc who was treated so poorly by my colleagues that I went to a chiropractor who specialized in nutrition and homeopathic medicine. I was hella skeptical but he is brilliant and knew so much more about food intolerances than any of the THREE GI specialists I'd seen. You may give them a try. If not, I can highly recommend the University of Chicago's celiac center. I did my training there and unfortunately didn't know I was celiac at the time, but I was always impressed with how cutting edge they were.
  8. I am a doctor and had severe migraines since puberty, where I have to give myself injections and I've been hospitalized twice. I realized that both times before hospitalization, I had a GI bug that I thought I'd caught from work. Now I KNOW that it was a gluten flare. I too got headaches 4-5 times a week. And I thought they were related to insulin levels bc I was always hypoglycemic and a high carb meal often brought it on. I am so relieved to know now why I was suffering all those years. I have had one severe migraine and a few minor headaches since being self diagnosed (after five weeks in the hospital) but they are so easy to treat now. One medicine dose and gone! And it's always when I'm contaminated ( my word for glutened!)
  9. I had two small bowel aspirated while in the hospital. Both fine. It's an uneducated GI doctors go to diagnosis for celiac symptoms. The burning and white tongue are glossitis, which is well known in celiac. Make sure NOTHING is getting thru the diet. Maybe try allergy testing. It seems like you're still reacting. My tongue cleared up almost immediately and is one of my first clues when something slips through.
  10. I'm so sad reading this. First of all, I'm new to the forums. But they may have saved my life. I am a doctor of emergency medicine at a well known "research" hospital. I just spent over a month in the hospital with every type of horrific test you can imagine. I was getting so much worse in the hospital that my Fiancee and I were forced to do our own research and diagnoses. I'm so sad to say I almost died bc of the doctors', including three different GI docs, absolute lack of knowledge about this disease. I cannot understand why it's so hidden from the world when it's more common than HIV, breast cancer and skin cancer put together. It makes no sense. You HAVE to find an MD who knows about this and specializes in it. The others know nothing and most aren't willing to do a little research to learn.
  11. I strongly believe that it's the type of flour with all it's enrichment that is making everyone sick. The adding of non-natural vitamin states to the flour can trigger your body to remove it bc it sees the vitamins as invaders or artificial. If the gluten is attached to the wheat, then your body attacks it too bc it's not as specific as we'd like it go be.
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