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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  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. zenjess1980

    Keratosis Pilaris?

    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 stopped eating Wheat immediately. So, as my GI problems continued -- I went in for another endoscopy, and they discovered I had MALT non Hodgkin lymphoma of the Duodenum. At 32 years old, I had intestinal Cancer. My doctor's told me that specific type of Cancer was rare in someone as young as me. Which, through the powers of Google and research, I learned that that type of Cancer can be directly related to untreated Celiac Disease. WOW Fast forward a few years, and I am Cancer free. Gratefully so I am gluten free since April 2016, but I have been thinking back to what that alternative medicine doctor said about being allergic to wheat. So my question is -- I know Celiac is an autoimmune condition and therefore causes an autoimmune response when gluten is consumed, correct? An allergy, to wheat, for instance - I'm kind of confused? Further - Can someone have both Celiac and a Wheat allergy, since gluten is found in wheat? Of course, being gluten free this may all be a mute point - but I'm interested anyhow... Clarification? Thank you in advance
  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 that for you. In the end, I say better to be safe than sorry! *hugs* Best wishes!
  6. I'm a 'King Arthur' fan
  7. 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 great fibromyalgia/arthritis essential oil lotion when needed called "Two Old Goats" -- works fantastic, believe it or not! I order mine off amazon.
  8. Diagnosed Celiac, and am overweight. I am starting Weight Watchers. Anyone else do the program?
  9. zenjess1980

    Keratosis Pilaris?

    Does anyone have Keratosis Pilaris as a skin condition related to Celiac and *NOT* DH? (I do)
  10. 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 Cancer and untreated Celiac. Has anyone had Cancer that was most likely caused by untreated Celiac? I'm 2 years Cancer free as of Dec 16th, after battling the Cancer for 18 months (undergoing chemo for 18 months and having had 14 sessions of radiation.) To be honest, I still get angry about this. And frustrated. Mostly because, after EVERYTHING, few people are willing to respect that I have Celiac, and that having Celiac contributed to having Cancer. My GI doctor said No villi damage = no Celiac. (I've had a MD and 2 alternative medicine doctors say that positive blood work and negative biopsy = latent celiac disease, especially given my history and the cancer diagnosis.) And even with that, my family doesn't much take this seriously either... Anyone else out there relate?
  11. 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 not eat gluten. Ignorance on other people's parts is NOT bliss, so to speak. And *nod head* ~ yea, like I had said earlier, the shock/confusion/anger I have experienced re: Celiac/Intestinal Cancer and my GI assuring me I do not have Celiac and I need not be gluten free, has messed with my mind, so much so that I have indeed cheated a handful of times (because let's face it... who actually wants to have Celiac Disease and be gluten free? Yes, I feel TONS better, but the food overall just isn't as yummy IMO.) Hmmm, growing thick skin. I am glad I am not alone and that people understand. That you all understand. Thank you!!!
  12. 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 (labeled it Latent Celiac Disease). I admit since going gluten free, I feel better. MUCH better. I have less symptoms. And, of course, if the Cancer was from un treated Celiac, I am grateful to have something on my side to at least help to ensure no relapse. With that said, since the question has been so much a back and a forth thing, and people in my life have seen me both eat gluten, and be gluten free, and have only heard I don't have Celiac (but haven't heard for themselves that I do) - I am getting a lot of "you can cheat, it's the holidays. you can go back to eating gluten free after." and... with the holidays coming up, I do not have gluten free options with my wife's family unfortunately... Anyway, I kind of got off subject here. Thank you again!!!
  13. 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 gluten free" - so I have cheated a handful of times over the last 7 or 8 months (please no mean comments on this. I'm truly confused, at a loss, etc. I do not want to have Celiac Disease, but I understand that if I truly do have Celiac, then I *must* be gluten free.) I have posted on this forum several times, and it has provided me with support in the past. So here I am again. I got a copy of my Celiac Panel blood work results, and I was wondering if anyone can help decipher/explain? There are no notes and limited reference ranges even given. Thank you!!! Gliadin IGA Antibodies 8.7 HIGH --- reference <5 TTG IGG -- 2.8 (no reference range given) TTG IGA -- 1.6 (no reference range given)