How Hard Is It To Get A Firm Diagnosis?

[Soconfused27]

I read so many posts about normally or mostly normal endoscopic results. Do doctors ever diagnose solely off of bloodwork? I know this sounds stupid but I feel like if it is celiacd then I'm going to need a firm diagnosis.

Without an actual diagnosis I doubt I will be able to get anyone to take me seriously, especially when I read about the extent of cross contamination. I told my husband about my blood results and how the positive IgA could possibly mean celiac. His response was you don't have silly yak. He's supportive of me and I love him but after 7 years of no diagnosis he refuses to believe something might actually be wrong. That and the fact that I down play how I feel most of the time.

More then anything I think I would need a diagnosis for my own peace of mind. I have been "fired" by 2 doctors this year and the last one actually yelled me and that took away the remainder of my fight. If this big flare up didn't start then I don't think I would have kept looking.

Another questions.. Can symptoms of celiac come and go? I think this big flare up of whatever this is is coming to an end. I am greatful for that but you would think if it was all caused by celiac it would be consistant. Despite eating cracker chips (with wheat, barley and rye) last night and a bagel for breakfast this am I feel pretty decent today. Some minor brain fog, sore gums, minor aches, but I was able to get up at 6:30 am and stay up today. Did you have worst days with no rhyme or reason before diagnosis?

[gatita]

Well, I am not diagnosed with celiac but I do have a severe gluten intolerance as well as (apparently) a wheat allergy, so take this for what it's worth.

 

I had to give up on getting a definitive diagnosis.

 

Yes, symptoms can vary a LOT. Consistent? Heck no. I had to do (or tried to do) two gluten challenges last year. I thought I would die since even a crumb makes me sick, usually within a few hours. The wheat allergy symptoms are almost instant. Yet in my second challenge, the pasta and bread meal I had seemed to do nothing to me. Only about 30 hours later, wham! So reactions seem to vary all the time.

 

It's true you might have something else going on, but if all your doctors haven't found it yet, you might just try a reverse gluten challenge yourself. Go without it for a few weeks or months and see if you feel better. As far as convincing your husband, sometimes it's just a matter of letting others know you are serious and that you simply get very sick when you eat gluten.

 

But since it sounds like you're still not sure yourself, maybe being gluten-free for awhile will settle it. That's what really worked in my case, and seeing it convinced my doctor, housemate, boyfriend and everyone else around me that WHEAT...MAKES...ME...SICK.

 

 

PS. That doctor who yelled at you sounds like a total jerk.