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Member Since 10 Jan 2010
Offline Last Active Apr 28 2012 09:41 AM

Topics I've Started

Anyone Have Symptoms Get Worse In Cycles?

29 September 2011 - 04:51 PM

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!

6 Year Old With Upcoming Gi Appt.

16 April 2011 - 12:08 PM

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. :(


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