ninabear

Thanks for your help everyone! I just really wish I had my medical records because now I feel like it's all a mystery, who knows what the doc tested for back then! My husband is right - this is exactly why we need electronic medical records.

My appointment with the gastroenterologist is in two weeks. I'll let you all know what he says! I hope I don't have to convince him to run the bloodwork

I'll bring a list of the recommended Celiac Panel tests to make sure he tests for everything!

My husband and I made appointments with a Gastroenterologist, and we're going to ask him to test us. Do you think we should have made an appointment with a PCP instead? We don't have one right now, and with our insurance plan (PPO) we can go to any type of doctor we want without a referral.

Will the Gastroenterologist be mad we made a direct appointment with him instead of going to a PCP?

I'm positive it was an endoscopy (through my mouth lol). I think they may have been trying to rule out Crohn's disease, though not sure if that would require a colonoscopy too. I've never had a colonoscopy, though my mom has and in fact I think that's what they did to diagnose her IBS. Maybe they did the endoscopy because it was my stomach that hurt all the time and I didn't have as many bowel movement-related problems?

I have a question: If the doctors did an endoscopy 11 years ago and then subsequently diagnosed me with IBS, does that mean they did not see any intestinal damage on the endoscopy, and therefore I cannot have Celiac?

Thanks everyone, and thanks for the link HappyGirl. I just got back from the dentist and I'm so disappointed to find I have 6 more cavities, including one under a cap and I have to have the cap removed! Granted I hadn't been to the dentist in a year and half, but I had 4 cavities the last time I went. I brush twice a day and floss once (don't worry, moving forward I'm brushing and flossing way more often than that!!!), and I have had 10 cavities in two years. I've struggled with cavities all my life.

I looked up dental enamel defects, and I definitely have the discoloration and translucent thing going on with my teeth. My mom said the dentist told her when I was younger that it was caused by a medicine I had to take as a child due to a bad ear infection. But then I found this online:

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Dental enamel problems stemming from celiac disease involve permanent dentition and include tooth discoloration

Aw man! The doctor's office just called and said since my last visit was 11 years ago, they no longer have my medical records in storage!

So now I'll never know if they tested me for Celiac, since my mom isn't sure! I guess I'll talk to the new doctor when my husband goes to see if I can schedule an appointment for them to test me too.

I tried to convince my husband to wait but he refuses to wait and so there's nothing I can do, plus he's started feeling better already and now I'm jealous! But I really want to be diagnosed at least through blood tests before I go gluten free.

Part of me hopes my medical records show I was tested and it was negative so I can just start right away on the diet, but the other part of me hopes I wasn't tested before so I can get tested because I have a strong feeling it will be positive.

Another symptom I've struggled with for years is fatigue. I never pieced it together though, and always thought it was because of what was going on in my life at the time. In high school I worked two jobs and was in honors classes and blamed my fatigue on that. Then I blamed my fatigue on college stress and internships. Then I blamed it on the 3 hour daily commute to the city to work, and then when I got a job close to home I blamed the fatigue on the stress of adjusting to a new job. Then I got pregnant shortly thereafter and blamed the fatigue on that. Now I'm a new mom and blame my fatigue on that! But COME ON ALREADY, is EVERYONE always so freakin tired and worn out from daily life? I hope going gluten free gives me the energy I have longed for for so many years!

Hi everyone, I was diagnosed with IBS 10 years ago as a teenager, around the same time my mom was diagnosed with IBS. Prior to my diagnosis I went from 106 pounds in 8th grade to 94 pounds freshman year of high school, and had frequent stomach aches that would keep me up all night. It was like a cramping/burning sensation in the upper abdomen just under my chest in between my ribcage. My mom had severe diareah that would come on suddenly (we joked how she knew the location of every restroom in every restaurant and store in town).

The doctor had me try a dairy-free diet and then a tomato-free diet (I think, may have been all acidic food and I just remember not eating tomatoes) to see if I was allergic or had heartburn from acidic foods, but the symptoms persisted. Then they sent me for a barium test which showed acid reflux, and I went on a few different medications (even tried Prilosec though at the time it was not approved for children) and the symptoms still persisted. They had me sleep with bricks under the head of my bed to put me on an incline but that didn't seem to help either.

One thing that helped alleviate the stomach pain was Aloe Juice, which I drank regularly. I also lived on Malox tabs LOL. At one point my parents took me into the emergency room because I was up all night with severe stomach pain, and they gave me some minty liquid stuff that I think was an antispasmotic that helped the pain go away.

Finally they did an endoscopy to rule out Crohn's disease, and said everything as fine (no sign of reflux either) and I was diagnosed with IBS. I went on Levsin and stopped the Prilosec, and after a while stopped the Levsin too as my symptoms got a lot better and the stomach aches much less frequent. I don't remember being tested for Celiac but my mom said last weekend she thought both of us were tested although she can't quite remember.

I am waiting for the doctor to dig up my medical records from their storage facility (LOL), and then I will post the results of any tests I had here. In the meantime I am continuing to eat gluten because if I find I was never tested for Celiac, I want to get tested.

I still get stomach aches on occassion and have to sleep sitting up in bed. I always tell people I have a sensitive stomach, and in college when I would drink at parties I always got really hungover and would throw up the next day and have diarreah feel drained for days! I still get a sharp shooting pain in the lower left side of my abdomen on occassion that makes me buckle over in pain, and then a few minutes later I usually find I have to go to the bathroom. I also had persistent pain in the lower right side of my abdomen a couple of years ago, and had an ultrasound but by the time I got the ultrasound the pain was gone and the doctor said it was probably a small ovarian cyst that burst before I got the ultrasound.

I tell people I have "weak hands" which I attributed to playing the piano (which I only play probably 1 hour a week) and typing on the computer. I always have to have my husband open jars for me, and if I play the piano too long my hands start to ache and get shaky. The pain was so bad I finally asked the doctor about it a few years ago and she did xrays to rule out arthritis. The results said I didn't have arthritis and we never explored it further.

I also had severe shoulder pain behind my left shoulder blade for years growing up - the doctors called it growing pains until finally one doctor diagnosed me with a taut tendon and I went to physical therapy and ultrasound therapy for a year until it started feeling better...well a few years after physical therapy it is back to hurting pretty much all the time.

When I was pregnant I had SEVERE morning sickness and actually LOST weight (started at 112 lbs, then down to 109), and had to be put on anti-nausea medicine so I would actually eat something and start gaining weight. I ended up gaining a healthy 35 lbs and gave birth to a perfectly healthy 8lb baby girl. She is breastfeeding still at 6 months old and has only eaten rice cereal, avocado and sweet potatoes (we just recently started introducing solids). She hasn't eaten gluten yet, but may have consumed trace amounts through my breastmilk.

My husband is concerned that he may have Celiac disease because of his variety of symptoms (chronically underweight, acne, wintery rash that may be DH, receding hairline, severe stomach pains as child) and his family history of digestive problems (aunt/uncle with IBS and colitis, brother with IBS and sister with Crohn's). He's already starting a gluten-free diet and has an appointment with a gastroenterologist in two weeks.

Doing research for my husband is what made me start to wonder if I might have Celiac too, especially when I read about people whose IBS symptoms disappeared after being gluten free! Based on my story above (sorry it's so long), what do you all think?