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...

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...

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!

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...

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...

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...

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...

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...

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...

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...

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.

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...

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...

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...

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...