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Emsstacey

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Everything posted by Emsstacey

  1. Emsstacey
    We actually sound very similar! I had (and still do have some minor) neuro issues... tingling hands, leg, etc... and lots of joint pain as well as GI issues. My only positive test was the DGP but my hip showed osteopenia (at 30 years old), and my bloodwork also showed extremely low vit. d and positive for Lyme. I have gone back and forth because I had...
  2. Emsstacey
    I am wondering if anyone has "flare-ups" before getting a diagnosis? My story is basically that I have had mouth sores my whole life, diarrhea, stomach/gas issues, ITP (low platelettes) and anemia from time to time. Several years ago I ended up with bad headaches and joint pain. At only 30 years old my hip showed beginning osteopenia and despite it being...
  3. Emsstacey
    Wow. It sounds like a lot more people with only the positive DGP. I guess that I need to go retest and find a GI. I would be very grateful if you update after your scope!
  4. Emsstacey
    gfcolorado, are you saying that only your deamidated gliadin was positive and your biopsy was positive, too? I ask because my only antibody that came back positive was the deamidated gliadin at a 31. I did not get the scope because I had one done about 10 years ago looking for the same thing. I never did get the results, though, just told it was ok. I...
  5. Emsstacey
    I get something similar. It often happens after eating but I never narrowed it down to one thing in particular... pizza is especially bad, though. I will get a clear bump on the back/top of my mouth, on my palette. It doesn't hurt, I can just feel it sticking out. It is really weird because I get mouth sores and have as long as I can remember but this...
  6. Emsstacey
    Oddly, my daughter has worsened since we made the appointment. She is going to the bathroom an average of 5 times/day and often within 30 minutes of eating. There is also undigested food visible most of the time as well as being loose and floaty. Does this still sound celiac? I am thinking she is sounding more celiac each passing day. She is also so easily...
  7. Emsstacey
    Thank you! I am hopeful that they will be up to speed on current research. Our ped wanted us to go to this doctor who is almost 2 hours away instead of a closer GI. She seems to think they are better and worth the drive. I just wish it didn't take so long to get in. She has went to the bathroom every time she has eaten today and complained off and on all...
  8. Emsstacey
    My dd has complained of stomach aches for a couple of years. She never complains for long, tends to forget and continue with whatever she was doing without any issue. I haven't kept a strict food diary but have not been able to attribute it to any particular food. I have tested positive for deamidated gliadin a couple of years ago and have worried that I...
  9. Emsstacey
    Yeah, he is no longer my doc. He also said, "I guess I can refer you to a GI if you really want to," Uh no, at the time I was tired of doctors!! It's been 2 and a half year and I am just assuming it was the DGP. It said something to the effect of "gliadin, deamidated". It was right at the beginning of it being offered. I wouldn't think the AGA would...
  10. Emsstacey
    I have suffered with canker sores for as long as I can remember. Mine had gotten almost continuous when I had a positive celiac panel. I read in Prevention magazine a tiny article about the benefits of sublingual B12. It stated that in a trial, 99% of people had complete remission of canker sores by taking 1000 mcg of B12 daily and sublingually. I bought...
  11. Emsstacey
    I had a similar result. My dr. said my celiac panel was negative and I expressed that I was surprised. He then added, well... only one came back positive-- the DGP. Not very convincing, overall negative.
  12. Emsstacey
    Thank you! It seems that I have so many of the symptoms but not so many of the immediate symptoms. It's the delayed symptoms that can be so vague that make it so hard to commit. However, I seem to now be possibly developing Meniere's and it makes me wonder if I keep eating gluten-- am I just going to develop autoimmune disease after autoimmune? Anyways...
  13. Emsstacey
    I have posted several times over the past few years about my history. I had aches/pains and osteopenia at 30 years old. History of chronic mouth sores and ITP (low platelettes), allergies and diarrhea. My doctor tested my vit. d level and did a celiac panel to try to find out the cause of the osteopenia. I had an 18 for the vitamin d and the only thing flagged...
  14. Emsstacey
    I have a great-aunt on the other side with confirmed celiac from Mayo. I have ITP and my family has lots of autoimmune: psoriasis, lupus, meniere's, polycythemia--you name it. I know the answer, I suppose, it is just that a month or so in... I get so tired of the difficulties of eating out and the prep work to always have healthy Gluten-Free meals available...
  15. Emsstacey
    I posted a couple years ago with a high positive deamidated gliadin, osteopenia, chronic mouth sores, fatique, headaches, vit d level of 18 and joint pains. My dr said it was not convincing of celiac. I have talked to my family dr and he basically dismisses it as well. I have trialed the Gluten-Free diet without very noticeable change, but my main symptoms...
  16. Emsstacey
    I have had a lifelong problem with mouth sores. I even get them on my throat and soft palate. Last year, I read an article stating that over 90% of sufferers no longer had mouth sores after taking 1000mcg B12 sublingually. I started taking it and rarely ever have a mouth sore now. I think mine were/are related to B12 deficiency most likely celiac related...
  17. Emsstacey
    I'm not a dx celiac but do have elevated DGP and symptoms of gluten-intolerance. I also tested positive for corn via skin prick test. I was advised that there was no reason to cut it out, but I think at some point, I will probably have to. I'm not sure of a direct link, but I do know that once you have a sensitivity to one food... it is more likely...
  18. Emsstacey

    ARCHIVED Camping?

    Emsstacey replied to Jencat's topic in Coping with Celiac Disease

    You can do some "normal" camp foods that are gluten-free. Look for gluten-free hot dogs, gluten-free chips, hamburgers, marshmallows, baked potatoes (on a grill or in the fire). You can take rice gluten-free bars like soyjoy and gluten-free trailmix. We always do bacon, eggs, etc... for breakfast and that would be good, too. Maybe gluten-free wraps or breads...
  19. Emsstacey
    Did you grind your beans at the store or at home? If you ground them at the store... then you could have had cc using the grinder that is used for multiple types of beans since most flavored coffees have gluten. Maybe? If not... I notice that every morning after I drink my regular coffee with cream... I have to run to the bathroom and often feel bad for...
  20. Emsstacey

    ARCHIVED Should I Even Bother?

    Emsstacey replied to StephE's topic in Doctors

    I am in the same boat. I'm tired of doctors. I've had so many just try to rush me out with a handful of samples and I never feel any better. The only way I have ever felt better is exercise, as close to a natural diet as possible and high-quality supplements. I would love to have a doctor that would be a partner in my health, but I've decided it's...
  21. Emsstacey
    I have read several threads on here in regards to Lyme disease and how gluten intolerance often can go along with it. I was diagnosed almost 2 years ago with Lyme via positive western blot and titre. I had multiple tests done at the same time to determine the cause of my hip pain and severe fatigue. My x-ray and follow up Bone density scan showed mild...
  22. Emsstacey
    You can get potassium from eating Banana's. I would be careful, though... because you don't know if yours is high or low and either can cause problems. Most likely, it is low, but I would just hate to tell you to go eat a bunch of bananas and it be the other way around. If you aren't already, I would cut out the caffeine and take a good, quality multi...
  23. Emsstacey
    I have had symptoms all my life, but the stress of paramedic school caused symptoms to step up a bit. Had an EGD that dx only gastritis and bloodtests that revealed anemia and low platelettes. I don't think I was ever tested for celiac. Fast forward 12 years to age 30 and ended up with Lyme. The combination of Lyme and extended antibiotics left me feeling...
  24. Emsstacey
    I think that the fact that she is feeling bad is reason enough to at least try the gluten-free diet. If her body is producing antibodies (which you said she was positive)-- it is recognizing gluten as something foreign. The fact that her biopsy was negative is most likely that they did not biopsy in the places where damage is at or that she has not had this...
  25. Emsstacey
    I wanted to update with a response I received today from Vikki Petersen, author of The Gluten Effect. I am not very familiar with her but signed up for her virtual book tour after seeing it advertised on the Pamela's facebook page. My question can be viewed here on her blog: www.glutendoctors.blogspot.com. I asked about what to do next after being positive...
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