Newbie Confusion

[Ivy]

I'm really hoping someone can help me with the mishmash of questions I have. I wasn't sure what section to post this in, so if this is the wrong place, sorry.

I guess I should explain some things before I ask my questions. Every few years, my stomach medicine seems to quit working and the Dr.s switch it. This last time didn't seem to make any difference, so they did another scope and I asked ahead of time if they were checking for Celiac and the Dr. told me that if I didn't have "floaty gray stools" it wasn't a possibility. He didn't test for it. After a long process, (reading, diet changes, accidental slip ups of gluten) I have come to the conclusion that it couldn't be anything but gluten causing the problems I've been having. Which is better than being convinced that there was something seriously wrong with me, I was coming to believe I was dying before I went to a gluten free diet. So much is better it's hard to believe, I had no clue before trying the gluten free diet that everyone doesn't swell up from eating, etc.

Two years ago I had an allergic reaction to something as yet unidentified, ( as in -hives, face swelled up, run to the ER). The next week, the Dr ordered an allergy battery, I guess it's one of the IgE ones they do that tests all kinds of things at once. It came back that I wasn't allergic to anything, including things like penicillin which makes me rash. (So not only did it not help me figure out what caused the face swell-up, my Dr. thought it was good because it meant I would be able to take drugs I had thought I was allergic to.) I am assuming that wheat was tested and negative too. I don't completely understand the IgE tests. Is it possible that being pumped full of prednisone, advair, benedryl and the like affected the outcome?

Does breathing wheat affect lung function with Celiac?

Is it possible to be as old as I am (51) and have made it this far without knowing it's Celiac?

Do I need to worry about my pancreas and how would I know?

Thanks to anyone for answering my confusion,

Ivy

[CarlaB]

Does breathing wheat affect lung function with Celiac? No. However, if you get it down your throat when you breath it it can affect your intestines.

Is it possible to be as old as I am (51) and have made it this far without knowing it's Celiac? Yes, I was/am 43

Do I need to worry about my pancreas and how would I know? don't know

Thanks to anyone for answering my confusion,

Ivy

I answered right by your questions. Celiac would not show up on an allergy test.

Welcome!

[plantime]

I don't completely understand the IgE tests. Is it possible that being pumped full of prednisone, advair, benedryl and the like affected the outcome?

Does breathing wheat affect lung function with Celiac?

Is it possible to be as old as I am (51) and have made it this far without knowing it's Celiac?

Do I need to worry about my pancreas and how would I know?

Thanks to anyone for answering my confusion,

Ivy

Yes, Benadryl will affect the outcome of your IgE tests. It will cause a false negative reading. I had to be off all of my allergy meds for 10 days before my skin-prick test. A friend's son refused to quit taking his meds for the test, so he couldn't get true results.

[queenofhearts]

Is it possible to be as old as I am (51) and have made it this far without knowing it's Celiac?

Ivy

Oh, it is so very possible. I've had symptoms since childhood & was diagnosed the week before my 50th birthday (by biopsy). Why no-one connected the dots before, I'm not sure, but it was elevated liver functions that finally caused my primary physician to send me to the specialist who figured it out.

Unfortunately, it takes a long time for people our age to heal from the damage done over many years, but at least we can look forward to a healthier old age!!!

Leah

[jerseyangel]

Hi Ivy--I'm another who was sick for many years. I had a lot of misdiagnoses and was finally diagnosed with Celiac when I was 49. The damage to my intestine was even visable to the camera--I am left with many other intolerances. At a year gluten-free, I still have a way to go.

[Jestgar]

You might also be mildly allergic to wheat.

Maybe your ER visit was caused by something that usually causes a mild reaction, but combined with increasing gluten issues was suddenly and dramatically worse.

My last gluten meal caused me to spend the morning in the bathroom throwing up and subsequently my face swelled up. I am mildly allergic to wheat, but eating it cooked wasn't a problem. (Well, not that I knew of anyway). I think the overload of gluten that day combined with the wheat allergy is what led to my violent reaction.

[Girl Ninja]

I have tested negative for wheat allergy, but am absolutely intolerant. The docs I saw didn't seem to realize the two could exist separately, so did not consider Celiac possible for me.

[tarnalberry]

I don't completely understand the IgE tests. Is it possible that being pumped full of prednisone, advair, benedryl and the like affected the outcome?

Does breathing wheat affect lung function with Celiac?

Is it possible to be as old as I am (51) and have made it this far without knowing it's Celiac?

Do I need to worry about my pancreas and how would I know?

About the allergy tests - Celiac disease is not a wheat allergy. An allergy is an IgE response, but an intolerance is an IgG (and IgA) response. So an allergy (IgE) test, won't tell you *anything* about an intolerance like celiac disease. Additionally, whoever did the allergy tests was a moron. I've had two - both given by AAAAI registered doctors, and they *always* noted that you had to be *completely* off your allergy meds (and *definitely* off an immune modulator like prednisone) for *at least* a week prior to testing. Your tests were _worthless_ if you were still on your drugs. Quite frankly, I'm appalled at your doctor - rudimentary medical knowledge should have told him/her that.

Breathing in wheat should not ordinarily affect celiacs (as the reaction is caused by a chemical reaction in the intestines), but it could cause an allergic reaction.

Yep, you could definitely have made it that far without knowing you had celiac disease. Not only is it not always active from birth, but it is missed in something like 90% of cases in the US.

I don't know about the pancreas issue - I've not heard it specifically mentioned with respect to celiac disease.

[Ursa Major]

Hi Ivy, and welcome to this board. I am another one who wasn't diagnosed until the age of 52 (actually, I diagnosed myself, because my doctors were clueless as well). What nonsense, that you can't have celiac disease unless you have grey, floating stools. You doctor is completely ignorant about celiac disease, allergies and intolerances, and you ought to 'fire' him and find yourself a doctor who knows what he is talking about!

If you get a rash from penicillin, you shouldn't be using it, period. I agree with Tiffany, your doctor is a moron. Obviously, your allergy testing was worthless, what a waste of money! But it could be an intolerance, which wouldn't show up on allergy testing, no matter what.

If you feel better off gluten, just stick with the diet. Forget about doctors and testing (unless you get tested by Enterolab Open Original Shared Link). Their test is simple (via stool sample) and a lot more accurate than blood tests or biopsies. Unfortunately, it is not cheap, but worth it if you can afford it. And it is still valid if you have been off gluten for a little while, so you won't have to go back to eating gluten for the test.

[Ivy]

Thank you all so much. It's all soooo confusing: allergy, intolerant, celiac. I think part of me is in denial still, and lack of knowledgable Dr.s doesn't help. I live in a small town so will have to go elsewhere. In the meantime, all I have is how I'm feeling. I tried McCann's oatmeal two weeks ago and was sick for 3 days, and it's taken two weeks to get back to feeling really ok, so no oatmeal. I don't quite understand why the reactions have gotten so much stronger.

Are Enterolab's results accepted professionally, and are they the only ones doing this method? If I don't get some "official" result somewhere, I fear being treated like a hypochondriac and not recieving proper care.

Ivy