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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes


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About Emsstacey

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  1. How To Proceed

    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 an EGD a long time ago looking and it was negative, but my GI/Celiac-ish symptoms have worsened and I am now going gluten-free. I have tried to get my doctors to test further but they always discourage it. THey are very uninformed. Just fyi... someone going through similar testing and symptoms.
  2. 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 July when we are outside all the time, my vitamin D level was 16. The doc did a complete celiac panel and everything was normal except for one that read: gliadin antibodies, deamidated. It was 30-something. I can't remember exactly. When I asked about Celiac he said it wasn't convincing but I could go if I wanted to. Prior to that, I had an EGD in 1999 looking for "malabsorption" but the doctor told me in recovery that it all looked good except for some gastritis. I'm wondering now if he even took any biopsies. I have called and am picking up the records as soon as I can get to the town he is in. So... I had gone several months/almost a year without any mouth sores and was feeling pretty good. Now, my mouth sores are back, I can barely eat without terrible stomach issues and my joints/fatigue/headaches are back. Can I have celiac and have cycles where I feel somewhat better and then cycles where I feel much worse? I am so frustrated because I have talked to my new family practitioner about being retested and everyone seems to just blow it off because I did not have a full positive panel... just the one. Plus, when it was run the DGP was unheard of. I'm assuming it was the DGP even though it didn't say peptide in it? I'm just not sure where to go from here. It's so hard to stick to the diet without a diagnosis but i have little faith that I will get a doc interested enough to diagnose me. Anyone have advice for me? Thank you!
  3. 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. 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'm actually going to go pick them up this week to see for myself what they say. Just curious! Thanks!
  5. 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 is totally different. It seems to pop up in response to something specific. Just for the record, I am still eating gluten but still noticed it when Gluten-Free as well.
  6. 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 upset and her eyes just look pitiful... dark circles and puffy. I am going to call Monday morning to see if they can put us on a cancellation list to see her sooner.
  7. 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 day with her belly hurting.
  8. 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 might be projecting my fears onto her, but her ped finally agreed that she needed to go be evaluated by a GI. It seems that her symptoms have gotten worse. She had terrible constipation a couple of weeks ago followed by almost a full week of diarrhea. Now, she is complaining of stomach aches several times per day. Just this afternoon, she ate a carrot with dip and within 2 hours... she went to the bathroom with obviously orange, floating poop. It was bizarre to see it go through her so quickly! She also has dark circles under her eyes very often, is on the thin side, has nosebleeds and mouth sores. To me, she seems very likely to have Celiac disease. Does this sound like like Celiac to you guys?? What should I expect at her GI appt? I am really not interested in having her scoped although I know that is a real possibility. Thanks!
  9. 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 have ever said deamidated-- right?
  10. 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 some at Wal Mart for about $5 and started using it. I have not had a canker sore since and that was almost 2 years ago. It has been a miracle for me. I think I must have been deficient and since B12 is a common deficiency for Celiac's... maybe that is why it is associated with canker sores? Just an idea but it worked for me!
  11. 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. 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 appreciate the encouragement. Evidently, I need to hear this in order to comply!
  13. 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 on the celiac panel was a high deamidated gliadin. It was above 30. He said it wasn't convincing, blah, blah, blah... I tried the diet and didn't feel a lot different and have since gone back and forth. My grandmother has a lifelong history of stomach problems and extreme osteoporosis that has not always responded to treatment. I had her ask her doctor about celiac and the doctor said that is probably what has caused all of her problems but she is "too old to put her through that diet". *sigh* I also have a great aunt that is confirmed celiac through Mayo clinic. I have had similar luck with getting further testing. My doctors all blow me off and I know that the Gastro's around here are no help. I don't really have family support to go off, either. I had a scope done at 20 years old looking for "malabsorption" because of stomach issues, ITP and rapid weight loss. I also started taking sublingual B12 and my mouth sores have stopped-- if I miss it-- they come back. It sounds to me that I am not absorbing it any way other than sublingual. So.... do I keep pestering my docs or do I just decide that once and for all... I need to be Gluten-Free? I feel that my only symptoms are the occ. diarrhea, alternating with constipation and horrible gas. BUT, I'm afraid it's ruining my body on the inside-- ex. the osteopenia at a young age-- and those things I can't feel a change with the diet but they are still being affected. It is such a difficult lifestyle to maintain without sufficient proof but I am tired of doctors here not being any help. What would you do?
  14. Frustrated...

    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. It would help my motivation to have a more concrete answer. I am going to ask for a repeat panel again and hope the dr will order it.
  15. 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 are no longer GI and more migraine/hormonal related. Fast forward to this year, headaches more frequent and chronic sinusitis. My mouth sores are better after adding sublingual b12. The frustrating part is that I finally talked my grandmother into asking about a celiac panel. She has bad osteoporosis, frequent diarrhea and rheumatoid arthritis as well as some sort of blood disorder where she is not producing enough red blood cells. Her dr agreed that it is very likely celiac that has caused her problems but does not want to test because she thinks she should be able to eat whatever she wants at her age. sigh. Is it time to stop chasing a diagnosis and go Gluten-Free for good? Any advice?