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zenjess1980

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zenjess1980 last won the day on November 16 2016

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About zenjess1980

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  • Gender
    Female
  • Interests
    I have long standing health problems including: Hashimotos Thyroiditis, Diabetes 2, Fibromyalgia, Migraines, TMJD, Bipolar 2, ADHD, Generalized Anxiety Disorder. Cancer Survivor: MALT Intestinal Follicular Non-Hodgkin Lymphoma. In remission since 12/16/2014.
    Positive blood work for Celiac Disease, Negative Biopsy = Inconclusive Result.
    Traditional Doctor told me no need to go gluten Free.
    Alternative Medicine Doctor advised I go gluten free.
    Gluten Free Since 04/2016.
  • Location
    Houston, Texas

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About Me

I  was probably a hippie in a past life. I am a chemical dependency counselor, a wife, and pet mom. I enjoy yoga, meditation, and music. I'm an Introvert by nature, or as I like to call it an extroverted introvert ;)  Any questions? Just ask.

  1. Hi There, thanks for the reply Yea it is kind of a mute point considering gluten covers wheat anyway... but I was curious and it was not something I really ever explored further. The testing was IgG, btw.
  2. Thanks. And yes I am 2 years Cancer free -- on December 16th, and doing pretty well Yea, it's a shame doctors aren't more clear on these things and do not have clear communication either! I have to say this forum has been a fantastic help. I'm glad you are staying gluten free!!!! Best wishes to you and your daughter!
  3. This is quite possible, if I am glutened (which happens) I get it bad. I noticed that within a day of no gluten, it clears up nearly completely. I've had this my entire life. Only since going gluten free, has it cleared up. Hmmm......... But I also do believe I'm having hormone issues (long story, but I'm 2 years post radiation and chemo, and I think I may be going into early menopause or SOMETHING is up... I have a doctor appointment next week.) Thanks for the reply
  4. So I've been thinking... My story in a nutshell --- had a weak positive blood work for Celiac several years back, had biopsies which were negative. My doctor's seemed stumped and told me I "probably didn't have Celiac, but not sure entirely what your results mean" and I could " probably continue to eat gluten and be fine." -- the subject was dropped (in hindsight, I SEE how preposterous this was!) So I did... I CONTINUED TO EAT GLUTEN... And my problems just got worse. I saw an alternative medicine doctor who did a bunch of testing on me and said I have a Wheat Allergy. I st
  5. I also have positive blood work, but ended up having negative biopsy. I literally had a doctor tell me "I don't quite understand your results. You'll probably be fine continuing to eat gluten." ... and so began a long journey. VERY long story short, I ended up getting duodenal non Hodgkin lymphoma (cancer) which is apparently related to untreated Celiac Disease! Imagine my shock, anger, disappointment, etc.! From what I understand the blood work they do is very specific to diagnosing Celiac. I am not certain if you can get a false positive. Perhaps others can help you out and answer
  6. Hello, Peg I too have Fibromyalgia, IBS, and Celiac Disease. Although, I was diagnosed with IBS prior to Celiac, and assume I may not have had IBS after all. If you continue having pain, I'd definitely see a Rheumatologist to see if you do have Fibro. I'm currently taking Savella and Gabapentin for management of my Fibro and my flares rarely happen any more. At one point, my fibro was so bad I had to walk with a cane (years ago) and I had been on pain killers, muscle relaxants, etc. to no avail. Plus, being gluten free really does help the fibro I have found. I also use a grea
  7. Diagnosed Celiac, and am overweight. I am starting Weight Watchers. Anyone else do the program?
  8. Does anyone have Keratosis Pilaris as a skin condition related to Celiac and *NOT* DH? (I do)
  9. My blood work was positive for Celiac, after years of mis-diagnosis and nobody putting two and two together or giving me straight answers. Thank you Google (LOL). I went in for a Biopsy to confirm Celiac Disease. Came out of my endoscopy with "no visual damage to your villi from Celiac, BUT, there's a mass in your duodenum. We biopsied that. It looks like Lymphoma." The biopsy confirmed I had Cancer. Non-Hodgkin Lymphoma of the Duodenum. The biopsies of my villi did NOT confirm Celiac Disease. Upon further research, I found there's a high correlation between this type of Can
  10. Thank you again for your reply. I agree that people respond to Diabetes much more than Celiac. I suppose because they understand it better. The old myth that Celiac is "rare", is just that... a myth... And I appreciate your honesty about me being my own best advocate. Again, thank you. I think I really need to sit down with my wife and speak with her about being my advocate too. Being that I am Diabetic as well, and my wife is VERY much an advocate with that, I can only hope that she can be with this too. It's strange, b/c in my every day life it's more 'normal' and 'acceptable' for me to no
  11. Thank you Gemini and squirmingitch for your replies, I really appreciate it! Yes, I knew that duodenal/intestinal non Hodgkin Lymphoma was highly associated with untreated Celiac Disease (I did some research, but the 'do I have celiac do I not have celiac?' has been a back and forth question with doctors for a while.) Needless to say I was pretty shocked/confused/angry when going in for my biopsy for Celiac, and they found the Cancer but said no Celiac. My GI doctor seems pretty adamant that I do not have Celiac. My last PCP and my integrative medicine doctor both said I do have Celiac (labe
  12. So I was told again by my GI doctor that I do not have Celiac Disease because my biopsies were negative, and I do not need to be eating gluten free (I had been seeing my GI doctor previously who diagnosed me with non Hodgkin lymphoma of the duodenum - part of the intestine. I am since in remission.) I have been told twice by 2 different doctors that I do have Celiac Disease based on my blood work. And I have been gluten free (mostly) for somewhere around 7 or 8 months I am guessing. But, admittedly so -- I keep hearing the GI doctor in my head saying "you don't have to eat glut
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