Jump to content

alevoy18

Advanced Members
 View Profile  See their activity

  • Posts

    47

  • Joined

  • Last visited

 Content Type 

Profiles

Forums

Events

Blogs

Latest Celiac Disease News & Research:

Everything posted by alevoy18

  1. alevoy18
    Hi everyone, I just recently had a 3 year followup scope due to multiple nutritional deficiencies and recent weight loss. Here are my results below. My 2 year followup showed very minor villous abnormalities and only plasma cells in the lamina propria. I am wondering if anybody knows what "foci of neutrophils" means? Or any other experiences are appreciated...
  2. alevoy18
    Hi, I have been diagnosed with Celiac Disease (Nov 2009) and Addison's disease (May 2011). I also am being investigated for autoimmune hypopituitarism due to low LH/FSH/Testosterone as well. My question is regarding my vitamin levels. Here were my levels pre and post treatment: ------------------------------------------------------------------- August...
  3. alevoy18
    Hi, I'm really sorry to hear you are struggling right now and I hope it gets better for you. I just wanted to let you know that I had orthostatic hypotension, salt craving, palpatations and autonomic dysfunction. I had to have a pacemaker put in because my heart would slow down inappropriately too much. I also suffered from weakness and had trouble with...
  4. alevoy18
    Hi everyone, thanks in advance. I'll try to keep this short, but I'm basically wondering if my GP is overreacting or not. Here is my sequence of events: Nov 2009 - Celiac Diagnosis tTG=56 - biopsy Marsh 3B - b12=210 ferritin=60 Nov 2010 - tTG=40 - b12=180 - ferritin=52 Mar 2011 - Addison's diagnosis with low cortisol and high ACTH - started cortisone...
  5. alevoy18
    Thanks to both of you. Yeah I've been strictly gluten free for these two years. I made mistakes in the beginning, but over the last year I cut out processed foods. But as I got stricter, my numbers got higher. I am happy to see only Marsh 3A since I expected 3C, but who is to say it even really improved because another biopsy could show 3B (this was just...
  6. alevoy18
    Some of you may know my history from past post. To summarize what has happened. I was diagnosed MArsh 3B and postive tTg-IGA (56 when >20 is strong positive) two years ago. Recently I had an tTg-IGA test come back as 372 (normal <20). My Gastro was alarmed by this number and said he has never seen anything so high. He just did an enteroscopy and have...
  7. alevoy18
    Thanks everyone for your responses. To answer your questions, First, I apologize, it has been 6 months since my last tTG, not one year (I just looked it up). Pills: The only new pill is my Cortisone for adrenal insufficiency. I have started cortisone due to my adrenal testing starting to show signs of failing, it is early but my ACTH was high,...
  8. alevoy18
    Hi everyone, After two years gluten free, my tTG went through the roof. It was initially 28 (range <10) in 2009, then it was 26 (range <10) in 2010 and now it is 186 (range <10). I had a scope this morning with an extension on it to look further in the small bowel (called a Enteroscopy). The initial results are below. The doctor came and spoke...
  9. alevoy18
    I got a call today from my Gastro doctor. He said that he is scheduling me in for emergency Endoscopy this week as he has never seen a tTG jump this much or one that was 20 times the range before. Not encouraging to hear from your doctor but hopefully all will end up well, thanks for the help!
  10. alevoy18
    Hi T.H., thanks for the response. I too also pondered about whether or not being extra sensitive has anything to do with it, it is always a possibility, but going from the 20's to near 200 seems extreme. Who knows whats possible though. I have not spoke to my gastro since my results came back, just my GP, so I will find out if they are going to test...
  11. alevoy18
    Thanks Ravenwoodglass, I appreciate the response. To answer your questions. 1. No, the only cereals I eat are Nature's Path gluten-free Mesa Sunrise, Nature's Path gluten-free corn flakes & Glutino Honey Nut O's. I avoid oats all together as I didn't want to risk it. 2. I am on a Cortisone for adrenal insufficiency and florinef/midodrine for low...
  12. alevoy18
    Hi everyone, thanks in advance. To keep this short, I was diagnosed in 2009 with Celiac disease by positive anti-tTg IGA and positive biopsy. My tTg at the time was 28 (range 0 - 10) and my biospy put me at Marsh IIIb (moderate villus atrophy). My blood test at 1 year had my tTG up to 40 which was a disappointment, so I restricted my diet down to mainly...
  13. alevoy18
    Hi, I was diagnosed by ttg/biopsy about 1 and a half years ago. I have been strictly gluten free ever since. Recently at my physical I had a blood test come back showing: April ----------------------------- RBC: 3.99 (normal 4.4 - 6.0) HB: 120 (normal 140 - 160) HCT: .34 (normal .40 - .50) WBC: 3.8 (normal 4.5 - 11.0) Absolute Neutrophil: 2.0 (normal...
  14. alevoy18
    Hi Everyone, I was diagnosed by tTG blood test and positive biopsy (Marsh 3B) in November 2009. Over the last couple of years I've had a few ultrasounds, due to finding lymph nodes in my neck/armpit. Prediagnosis I had a Ultrasound that showed my spleen as 11cm long. 6 months later after going gluten free, I had another ultrasound which showed my spleen...
  15. alevoy18
    Thanks again for the reply. I didn't know about the airborne issue. My fiance is on a gluten diet, but we have seperate everything. I do cook for her sometimes though, as I made her cookies today actually. I will have to remind myself of this in the future. Thank you both for the tips. I never had my antigliadin antibodies tested originally, I just had...
  16. alevoy18
    Thanks for the advice, I will take a look into what you mentioned. What I really curious about is that most people say anti IGA will show you compliance to diet. That came back normal. But why would tTG still be high, shouldn't those two both one way or another if you have normal total IGA levels. IGA and even IGG are not that bad, but tTG is still 3 times...
  17. alevoy18
    Originally in 2009, I had a tTg test come back at 60 (ref range under 20). After this I had a biopsy which showed moderate villous atrophy and increased IEL (Marsh 3B). I was diagnosed with Celiac Disease on Nov 15, 2009. So I have been gluten free for about 15 months. Recently I have been seeing a neurologist due to autonomic issues. He told me usually the...
  18. alevoy18
    Thanks a lot! I actually have been taking the wrong B12, I will try switching to methylcobalamin. Thanks for the great advice, I appreciate it.
  19. alevoy18
    Thanks for the responses everyone, I appreciate it. While I am sorry to hear you all had issues, I am glad to see you are improving. As far as my vitamin levels go, I am taking supplements for my vitamin D and zine and am taking a sublingual B12. My doctors don't feel my B12 is low enough for shots, yet anything I read says under 400 can cause neurological...
  20. alevoy18
    Hi all, I've had a strange road to my diagnosis and a tough recovery, just wanted to share my story to see if anyone had a similar experience. Be warned it is long, I am sorry in advance. In 2008 (at age 21) I collapsed and was brought to the hospital. I stayed for a week and they told me my heart rate was low, but I passed the echo/stress test, etc...
  21. alevoy18
    Hi, I am sorry you have had to go through this. I was diagnosed with Celiac Disease in November 2009 after being told I possibly had Lymphoma. I initially had a pacemaker put in (I was 22, I am 24 now) because my heart rate was slow (20 bpm at night) and would stop sometimes. At the time they had no idea what was wrong, but it turned out that Celiac caused...
  22. alevoy18
    Thank you very much for your detailed response! John: You mentioned low zinc will cause low vitamin A. Fortunately for me only my zinc, vitamin d and B12 are low. You also mentioned that you suspect liver dysfunction, why do you say this, just curious? Thanks again for the info! GFinDC: Thanks for letting me know this, I will try to eliminate processed...
  23. alevoy18
    Hi all, I was diagnosed a year ago with celiac disease through a strong positive blood test and biopsy. anti-tTG: 60 (range < 20 Biopsy: Moderate villous atrophy with greatly increased intraepithelial lymphocytes. My anti-tTg was tested again a month ago because I went from feeling good after going gluten-free to feeling bad again. My anti-tTg...
  24. alevoy18
    Hi, Yeah I'm sure our health care has some similarities, unfortunately it has to do with doctors disagreeing with our well being. I've learned you have to push and push if you want to get the care you need, as I'm sure we all have learned already. Yeah I can still supplement myself, and I have been using the B12's that go under your tongue, but my B12...
  25. alevoy18
    Hi, Sorry, I forgot to mention I am from Toronto, Canada. Our lab ranges are always quite different as we use different measurements, that is why I'm always sure to post the range numbers. Sorry to be confusing and thanks for the comments. The only problem is in Canada, our health care system is government funded, so we have to do all tests through our...
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.