What Are Your Diagnosis Stories Like? It's Been Years Will I Ever Figure This Out...

[blckchr8]

Ok, well I'm new to all this. I've been looking in to Celiac due to a whole range of symptoms:

Chronic constipation [i've gone more than 21 days without going-had problems for at least 14 years]
Vomiting [As a kid I had a 'nervous stomach' and threw up a lot randomly but never had a fever or ongoing sickness. Still do it now sometimes.]
Hypothyroidism [i asked my endo about testing for my antibodies but she said she was pretty sure they'd come back positive anyway so I pretty much have Hashimoto's – not as concrete as I'd like but...]

Horrible gas and bloating [i've been keeping an eye on symptoms and food and last night my stomach went from 24.5 inches to 29 inches. Very uncomfortable. I also happen to burp and they are bad. It's embarrassing and nothing helps much.]

Vitamin D deficiency and borderline calcium  [This was awhile back but I've been bad about taking vitamins...and I take a lot.]

Diaherra [i don't think I have a motility issue but I did have a ten day period about 3 months ago. It was bad and nothing would stop it.]

horrible fatigue, tons of cavities, nausea, vomiting-occasionally undigested food, back pain, acid reflux, PCOS, anxiety, depression, brain fog, panic attacks, dry skin and nails that crack and bleed, super pale skin, always cold, dizziness/car sickness/vertigo 

So, now that you know all my symptoms, and if you're still reading...I finally went to the gastro for the first time today. I think there was some miscommunication by language barriers but he did have me do a blood test. I think it was the full celiac work up...maybe? He's also having me do an endoscopy, a colonoscopy, an xray this Thursday, and he said something about doing a marker test. 

Before all of this though he gave me a sheet and told me to follow a low-fiber diet. But it looks almost completely gluten free. If the blood test comes back negative like it does a lot....by the time I do the endoscopy there could be nothing there to see. Not even sure if he'd still be looking for Celiac if the blood test was negative. 

Thanks for reading this book. I guess my question is: "According to my symptoms, does this sound like celiac? Furthermore, how much did you have to fight for a diagnosis?"

 

 

[cyclinglady]

I'm still a newbie, and fortunately I didn't have to fight for a diagnosis!  But, there does sound like there's a problem with communication between you and your doctor.

 

 When I tested "mildly" tested positive for celiac (blood test), I was instructed to continue to eat gluten until my endoscopy which was seven weeks out.  Like my "last supper", I consumed gluten like crazy (loaves of bread per day).  By my endo, I had moderate to severe damage to my villi and I developed intestinal symptoms ("rock/lead" in stomach, gas, bloating, etc.).  Prior to my blood test, I only had Hashimoto's Thyroiditis and anemia and no intestinal problems.

 

I would continue to eat gluten right up before the test and then follow those instructions and meds give prior to an endoscopy and colonoscopy to clean out your intestines for observations and biopsies.  I would ask for biopsies for celiac even if your blood test is negative.  Since communication is an issue, put it into writing.  

 

I'm hoping more experienced forum members can comment as well.

 

Good luck and be your own advocate!