Anyone Have Symptoms Get Worse In Cycles?

[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 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!

[eatmeat4good]

I think the test you had is the most sensitive one there is. Someone will be along to correct me if I'm wrong, but on that test if it is positive at all then you are Celiac. Not every Dr. requires the biopsy to be positive if the blood tests are. You certainly have enough Celiac symptoms to warrant going gluten free with or without a diagnosis. Have you tried to be gluten free? Are the cycles/flares happening when you are on gluten? Many people have symptoms that come and go and change over a period of years before they either get diagnosed or realize that gluten is causing their symptoms. Celiac is called the Great Mimic for that reason. With changing symptoms and periods of flares and seeming remissions it is very difficult to diagnose. I couldn't get a doc interested enough to diagnose me either. But I'm staying gluten free for my life. Do you respond positively to the gluten free diet? Even when you go off of gluten you can still have flares or illness due to cc so it is very important to give it a good strict try. On the side of testing...Why couldn't you ask for a full Celiac Panel now if you have been eating gluten? Surely your Doc would have no reason to object to that. Though I know they do.

I'd say stay gluten free. But then I'm one of those who think gluten is bad for everyone not just Celiacs. Good luck and I hope you get some answers

[GlutenFreeManna]

  On 9/30/2011 at 12:51 AM, Emsstacey said:

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!

If you are still on gluten then get to another dr to get retested, ASAP. Your tests that were negative may be positive now. On a full gluten diet I too had periods of time where I felt better than others but my health got worse (new symptoms/problems developed) with each passing year.