Am I Celiac?

[JamTart]

Hi- try to keep it short. I had a positive home test biocard for celiac, went to doc, had negative bloodwork but many symptoms and exceaaive weight loss. He wanted me to go gluten-free for a month to see it things improved. Anyway, it's been 3 week gluten-free and I got a bad sinus and eat infection eight after starting so haven't had a great chance to determine if I feel better, but my D has finally stopped, I have a but more energy, and (strange) I can have more than one glass of wine without feeling horrible and not being able to function for 2 days afterwards because of exhaustion and headache. My question is: tonight I accidentally reflexively ate a piece of white flour spaghetti while preparing my daughters dinner (the first gluten I know I've ingested since starting the diet) and as of 6 hours later I've had no reaction whatsoever - stomach, migraine etc. If I were celiac wouldn't I have some kind of telling reaction that I'd just ingested gluten?

[Cara in Boston]

Sometimes the reaction is immediate, sometimes it takes days to feel it, sometimes there is no reaction at all.

I know this doesn't help you figure it out, but don't rule it out just because you didn't feel anything.

When I first tried the diet (2 weeks) I was feeling much better. My doctor decided he wanted to do an endoscopy so he told me to resume eating gluten (lots) for 3 days . . . I did, and I felt just fine. I began questioning the whole celiac thing. Had endoscopy (negative) and was told to eat gluten for 4-6 months so we could re-test. He thought maybe the 2 weeks gluten free was giving us a false negative. So I began eating gluten again and within weeks, all my symptoms were back. It was gradual, but eventually, I was right back where I started. I gave up on the gluten trial and just accepted a diagnosis of "gluten intolerance".

Now, after a year of being gluten-free, if I accidently ingest gluten, I feel it within hours and it lasts for days. Takes about a full week to get back to normal.

Cara

[MitziG]

Yeah, it is very hit or miss with reactions, especially in the beginning. Part of what makes celiac difficult to diagnose. If everyone got sick immediately after eating gluten, it would be pretty obvious.

Get a copy of the labs your doc ran and post them on here. Id be willing to bet he didn't do a complete panel.

[JamTart]

  On 6/12/2012 at 1:04 PM, MitziG said:

Yeah, it is very hit or miss with reactions, especially in the beginning. Part of what makes celiac difficult to diagnose. If everyone got sick immediately after eating gluten, it would be pretty obvious.

Get a copy of the labs your doc ran and post them on here. Id be willing to bet he didn't do a complete panel.

Thankyou for replying! If you look under my other posts I have posted my lab results. He didn't test total IgA, which I think he should have, but maybe with my IgG tests it's not necessaary?

[JamTart]

I posted results in another posting- didin't check total IgA?maybe it wasn't necessary with the test he ran? Thanks for replying!

[cavernio]

I too don't get noticeably immediate symptoms from eating gluten. Unlike you, however, I had positive bloodwork and now I have a positive visual.

I didn't even really notice how much better I HAD felt being gluten-free until I started to eat gluten again for my scope. And even then, it took at least a week for me to really notice.

Some common celiac symptoms I've never associated with eating gluten are nausea, diarrhea (coffee, excess sugar, and dairy can cause it, but never just bread or a roll or something), and headaches. I mean, I get headaches fairly often, but not often enough to be caused by every gluten-filled food I ate.

Things that got better was the parasthesia and bloating. But things like my period, and apparently I have IBS now too, and lactose, also gave me bloating and gas.

Energy levels, well, I got more energetic when I started supplement b vitamins and iron, even while eating gluten. And concentration levels...I really dunno about those yet. Too early too tell.

But yet here I am, full-blown, damaged intestines celiac!

Something to note, the antibodies that they test for in your bloodstream I don't think are ever supposed to be in your bloodstream. If they're there it means you've got some sort of leakage or something (which happens with most celiacs). If you want to be certain, get the biopsy. And eat as much gluten as you can, like, every meal and snack on crackers, for as long as you can before getting the gastroscope.

[KMMO320]

I am new to all this too, about 2 weeks totally gluten-free but from what I gather here, other places online and from people I know personally, the short answer is:It's different for everyone.

My Sister in law feels the effects the next morning. A friend will feel it up to days later.

A month ago, I went gluten-free for just a week to see how I felt and at the end of the week, I ate something, I forget what, and within 2 hours I had really bad ear pain, a headache and nausea, as well as extreme fatigue.

I have been gluten-free for 2 weeks now, except for the other day I ate a donut and I felt...nothing. Nothing right away, nothing the next day. So I ate a piece of a muffin, I was trying to test myself..and again within hours, I had bad ear pain and later I got a migraine (which for me is optical, not painful. I couldn't see, my vision had gone all spotty).

So I guess its just different. You may be lucky and feel nothing, but it doesnt mean damage isnt being done on the inside.