Why Is It....?

[shadowicewolf]

I've had both the bloodwork and genetic testing done for celiac (and they both were positive), but my endo was negative (mind you the GI doc did it 4(!!!) or so weeks after i went gluten free). He refuses to say whether or not i have it or not. I asked my new GP what she thought, and she said because of my test results and because she doesn't know much about it that i should go and see a new GI doctor. Both doctors (oddly enough) are supportive of my gluten free diet.

Anyway i went to an allergist a few weeks ago (this is before i found out about my gallbladder) to see if maybe i had some issues allergy wise with food. Had everything ran that i could think of (including gluten for a "just because" reason), and only enviormental allergies and tomatos came back with a strong positive (i was pretty sure on the tomatos before had because the last few times i had them they did not like me at all).

All right thats good and dandy, then we find out that my gallbladder is not working.

Ever since both my mother and grandmother have been making comments that i should go back to eating gluten after i get it out, because, according to them, i should be able to. Huh?

This has progessed even more so since i got no "allergic" reaction from gluten. I try to explain to them that intolerences (i kept it simple ) and allergies are very two different things. Nope, it get shoved off into the corner as if i don't know anything.

They just don't get it!

Ever since i've been gluten free, i no longer have daily D problems (i've had it maybe 3 times since being gluten free ), anxiety issues (they are still there but they are less severe), burning (on my head, neck and shoulders), vomiting, bloating, and numbness. I still have C and indigestion, but i attribute this to my gallbladder not working. I still can't sleep at night though (but this is due to my side hurting due to my gallbladder ). I still have issues with my throat (though with the endo it showed that acid has been really damaging it, so it doesn't surprise me it hasn't healed yet). As well as unexplained weight loss (30+ lbs).

I'm just frustraited over the whole damn thing.

I mean why say that when they know i feel better without it?

I've told them that i couldn't care less if they have their gluteny stuff (i really don't care), but then they come back and say they feel guilty?

Ugh, anyone else go through this? Please tell me i'm not alone.

Just wanted to add that i was diaganosed by a different doctor before all of this.

[rosetapper23]

Your doctors need to heed the advice of celiac expert Dr. Alessio Fasano. For the past few years, he has lectured on how to best diagnose celiac disease. He says that if your bloodwork is positive, your genetic tests are positive, you feel better when eliminating gluten, and your symptoms return when gluten is reintroduced, then there is NO REASON for an endoscopy. He says if a person can answer yes to all of the above, that is enough to diagnose a patient. He has stated numerous times that, with an endoscopy, the damage can be located beyond the reach of the scope OR the doctor has simply not biopsied the damaged areas OR the pathologist is not experienced enough to correctly diagnose the condition. Therefore, an endoscopy should NOT be considered the gold standard for diagnosis. Please inform your doctors and family members of this recommendation from one of the top celiac experts in the world.

[FooGirlsMom]

Sounds like as RoseTapper said, you need to grab an article from Dr. Fasano and show your family...you have Celiac. The end.

I think people look at the gluten-free diet and see how restrictive it is and how hard it is going to be on you and everyone around you, that they think they are doing you a favor...maybe you CAN eat it - try!! Try!! lol

I'm 43 and have met a lot of resistance throughout my life from people and my choices (good ones by the way). What I see now, that I didn't see 20 years ago, is that if you make decisions and are very sure about what you are doing and NICELY don't give people room to insert themselves into your decisions, they eventually quit trying. When I've had the most troubles with family & friends is during that "figuring something out" period where you are unsure or don't sound convicted or are still looking for answers to something. Then they come flying out of the wood work. There is nothing people love more than telling someone else what to do LOL

Hang in there. Stick to your guns and just realize...it's your decision and make it. They don't have to suffer the effects of what you do or don't put into your mouth - you do. People who love you really don't want to make you sick.

FooGirlsMom

[shadowicewolf]

thanks for the encouragement nn;

My mother wants me to have the bloodwork redone again after my surgury on wednesday. I told her fine, but i have to go back on gluten for a while to do it

Its just she won't drop it, and honestly if me going back on it for 3 or so weeks (from what i read, thats normal for blood tests?), then i'll do it (and feel like crap the whole time but if it gets her to stop....).

Think that'll work?

[anabananakins]

thanks for the encouragement nn;

My mother wants me to have the bloodwork redone again after my surgury on wednesday. I told her fine, but i have to go back on gluten for a while to do it

Its just she won't drop it, and honestly if me going back on it for 3 or so weeks (from what i read, thats normal for blood tests?), then i'll do it (and feel like crap the whole time but if it gets her to stop....).

Think that'll work?

No, because if you've been gluten free awhile you'll likely test negative and that's not going to help you any. They say you need about 4 slices of bread a day for 3 months for a gluten challenge and even then you might not test positive. In my opinion, it's not worth it, especially not just to make your mum happy. If I told you to bang your head against the wall to see if you end up with a headache, would you do it? Of course not, you know it would hurt. A gluten challenge when you already know being gluten free makes you better, is just going to make you sick for nothing. Best outcome - you test positive for celiac and get told to never eat gluten again, and you already know that works. Worst case - you test negative and they'll be even less supportive.

You have celiac and your mum needs to accept that. She will, in time, as she sees how well you're doing. I think parents have trouble with this because they feel like they did something wrong to 'break' us. My mother was quite defensive about me going gluten free, I think she felt that she should've known, or that it's her fault somehow. It bugged her that I was now in this weird minority who couldn't be totally free and easy with eating, like it made my life less some. But that passed as she saw how much happier I was and how much better I felt. I think in time, if you're mum sees how well you're doing, she'll stop hassling you. Meantime, try putting your hands over your ears and singing "lalalalala I'm not listening!!!" :-)

[shadowicewolf]

No, because if you've been gluten free awhile you'll likely test negative and that's not going to help you any. They say you need about 4 slices of bread a day for 3 months for a gluten challenge and even then you might not test positive. In my opinion, it's not worth it, especially not just to make your mum happy. If I told you to bang your head against the wall to see if you end up with a headache, would you do it? Of course not, you know it would hurt. A gluten challenge when you already know being gluten free makes you better, is just going to make you sick for nothing. Best outcome - you test positive for celiac and get told to never eat gluten again, and you already know that works. Worst case - you test negative and they'll be even less supportive.

You have celiac and your mum needs to accept that. She will, in time, as she sees how well you're doing. I think parents have trouble with this because they feel like they did something wrong to 'break' us. My mother was quite defensive about me going gluten free, I think she felt that she should've known, or that it's her fault somehow. It bugged her that I was now in this weird minority who couldn't be totally free and easy with eating, like it made my life less some. But that passed as she saw how much happier I was and how much better I felt. I think in time, if you're mum sees how well you're doing, she'll stop hassling you. Meantime, try putting your hands over your ears and singing "lalalalala I'm not listening!!!" :-)

What if i did the blood test without eating it? Would that be any proof?

[Skylark]

What if i did the blood test without eating it? Would that be any proof?

If you've been off gluten for a few months, the blood tests are no longer reliable.

[anabananakins]

If you've been off gluten for a few months, the blood tests are no longer reliable.

Yeah, you'd more likely be proving to your mum that you were ok eating gluten.

[shadowicewolf]

ugh, she relented once i told her of the 3 month thing.

I suppose she's just optimistic that i may not have it.

i don't see why i have to prove it when i couldn't even handle benifiber

[ravenwoodglass]

What if i did the blood test without eating it? Would that be any proof?

If you had positive blood tests before you went gluten free and then got retested after healing and the tests were then lower or negative IMHO yes that would be 'proof' that you needed the diet since you also have had relief from symptoms.