Anyone had false negative celiac sprue?

[Guest guest]

I think I remember reading here once that celiac sprue isn't alway

100% correct.

Anyway, I've been looking on line and doing some more searching

about my symptoms. Most recently this funky rash I keep getting. I

have inadvertantly not eaten a lot of gluten lately and then had

french toast for breakfast and a short time later (and hour or so I

think) I started getting these white bumps that turned into raised

red bumps and are very very itchy. I was reading on the PBC board

and someone mention dermatitis herpetiformis and I googled and

looked at pictures and that looked like my rash.

I have to have an EGD and see my hepa tuesday so I will mention it

to him. Should I request to be retested or is there another lab I

should have?

THanks!

PBC & PSC

[Guest guest]

I don't know what tests you have already had but the celiac panel of

tests is @ 80 % affective in diagnosing celiac. There is a genetic

test done by prometheus labs HLA DQ2 and DQ 8 that is very accurate.

Usually biospies and lab confirmation are needed to diagnose celiac.

There is a very helpful website you may have found in your research

already- www.celiac.com I hope you get whatever is going on figured

out soon.

Lori

lucky mom blessed with triplets

>

> I think I remember reading here once that celiac sprue isn't alway

> 100% correct.

>

> Anyway, I've been looking on line and doing some more searching

> about my symptoms. Most recently this funky rash I keep getting. I

> have inadvertantly not eaten a lot of gluten lately and then had

> french toast for breakfast and a short time later (and hour or so I

> think) I started getting these white bumps that turned into raised

> red bumps and are very very itchy. I was reading on the PBC board

> and someone mention dermatitis herpetiformis and I googled and

> looked at pictures and that looked like my rash.

>

> I have to have an EGD and see my hepa tuesday so I will mention it

> to him. Should I request to be retested or is there another lab I

> should have?

>

> THanks!

>

>

> PBC & PSC

>

[Guest guest]

I don't know what tests you have already had but the celiac panel of

tests is @ 80 % affective in diagnosing celiac. There is a genetic

test done by prometheus labs HLA DQ2 and DQ 8 that is very accurate.

Usually biospies and lab confirmation are needed to diagnose celiac.

There is a very helpful website you may have found in your research

already- www.celiac.com I hope you get whatever is going on figured

out soon.

Lori

lucky mom blessed with triplets

>

> I think I remember reading here once that celiac sprue isn't alway

> 100% correct.

>

> Anyway, I've been looking on line and doing some more searching

> about my symptoms. Most recently this funky rash I keep getting. I

> have inadvertantly not eaten a lot of gluten lately and then had

> french toast for breakfast and a short time later (and hour or so I

> think) I started getting these white bumps that turned into raised

> red bumps and are very very itchy. I was reading on the PBC board

> and someone mention dermatitis herpetiformis and I googled and

> looked at pictures and that looked like my rash.

>

> I have to have an EGD and see my hepa tuesday so I will mention it

> to him. Should I request to be retested or is there another lab I

> should have?

>

> THanks!

>

>

> PBC & PSC

>

[Guest guest]

I don't know what tests you have already had but the celiac panel of

tests is @ 80 % affective in diagnosing celiac. There is a genetic

test done by prometheus labs HLA DQ2 and DQ 8 that is very accurate.

Usually biospies and lab confirmation are needed to diagnose celiac.

There is a very helpful website you may have found in your research

already- www.celiac.com I hope you get whatever is going on figured

out soon.

Lori

lucky mom blessed with triplets

>

> I think I remember reading here once that celiac sprue isn't alway

> 100% correct.

>

> Anyway, I've been looking on line and doing some more searching

> about my symptoms. Most recently this funky rash I keep getting. I

> have inadvertantly not eaten a lot of gluten lately and then had

> french toast for breakfast and a short time later (and hour or so I

> think) I started getting these white bumps that turned into raised

> red bumps and are very very itchy. I was reading on the PBC board

> and someone mention dermatitis herpetiformis and I googled and

> looked at pictures and that looked like my rash.

>

> I have to have an EGD and see my hepa tuesday so I will mention it

> to him. Should I request to be retested or is there another lab I

> should have?

>

> THanks!

>

>

> PBC & PSC

>

[Guest guest]

Me again, I am someone who researches the heck out of a disease, especially if I have one. The only true way to diagnose Celiac's disease as opposed to a meer gluten intolerance if to have an endoscopy/biopsy. There is no other way to tell, they have take a bit from your small intestines and check the villa, if they are "dead" then they can conclude that you do have Celiac's disease. Celiac's disease has been known to cause rashes, but I am not sure how quickly they appear. What you are describing sounds like a reaction to the gluten itself, the wheat causes you to break out, meaning that you are at the least allergic to wheat. Another thing to remember is that gluten is everywhere. Using shampoo's and Conditioner's with wheat germ oil, barley, hops, any of those things is the same as ingesting them. They enter through your pores. Some hair dyes have gluten,

many lotions have wheat in them. And please remember that just because something is wheat free, that DOES NOT make it Gluten free. Gluten can be found in spelt, barley, hops, wheat germ and so on, the list goes on and on. It took me a good few months to be totally gluten free. When I eat gluten now, and yes, sometimes it does happen, I get immediately bloated and gassy. I have a pain in my stomach that I can't get rid of, and finally, if i am lucky the gluten comes out in diarrhea later that night or the next day. Gluten is hiding everywhere, be careful, and if you need more information, there is a binder you can buy on line here that has a list of all foods that contain gluten and how to avoid them. My mother and I each bought one, and it was a life saver.wildwildtrips wrote: I don't know what tests you have already had but the celiac panel oftests is @ 80 % affective in diagnosing celiac. There is a genetictest done by prometheus labs HLA DQ2 and DQ 8 that is very accurate.Usually biospies and lab confirmation are needed to diagnose celiac.There is a very helpful website you may have found in your researchalready- www.celiac.com I hope you get whatever is going on figuredout soon.Lorilucky mom blessed with triplets>> I think I remember reading here once that celiac sprue isn't alway > 100% correct.> > Anyway, I've been looking on line and doing some more searching > about my symptoms. Most recently this funky rash I keep getting. I > have inadvertantly not eaten a lot of gluten lately and then had > french toast for breakfast and a short time later (and hour or so I > think) I started getting these white bumps that turned into raised > red bumps and are very very itchy. I was reading on the PBC board > and someone mention dermatitis herpetiformis and I googled and > looked at pictures and that looked like my rash.> > I have to have an EGD and see my hepa tuesday so I will mention it > to him. Should I request to be retested or is there another lab I > should have?> > THanks!> > > PBC &

PSC>

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