Do I really have Celiac?

[Ga girl]

A few months ago I started having digestive problems (gas, bloating, diarrhea) so my Dr had some blood tests done for IBD. My IgA levels were elevated so I had an endoscopy and Celiac Panel done.

The biopsy came back negative but my Celiac Panel came back positive.
I keep hearing that a biopsy was the only way to confirm Celiac. The PA that I saw told me that I did have Celiac, but now I don't know what to think.

Could someone please help put my mind at ease.

[mrsppmrxky]

I think that the biopsy only shows Celiac if they actually get a damaged area in the biopsy. (I could be wrong and I am sure that someone will come along and correct me if I am.)

I am sorry that you have been sick, but be very thankful that you have gotten an answer in so short of time. FOr many, it takes years for someone to even listen to the problems and put it together if the medical community ever does. (Many have to find information on their own.)

This isn't that bad of a sentence! GF living is not that impossible to deal with. We do have lots of good tasting food. (My MIL just moved in with us and I am putting her on the diet with us because I don't want a mixed kitchen. She can eat what she wants, I just cook only GF. She has loved my breads and the meals that I prepare. She has been very surprised at how good it tastes.)

Don't feel shy if you have any questions.

We have a Boot Camp thread that should answer a lot of your questions.

Welcome to the board!
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[ostrich]

Welcome to the board! If you really want to know you could have a biopsy done. But MrsP is right; it's only going to come back positive if there's villi damage, which is the end-stage of this disease. Don't be afraid to ask questions, we'll do what we can to help.
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Ostrich :>--O==={

Did you think that your feet had been bound
By what gravity brings to the ground?

[Ga girl]

Thanks for your replies.

ostrich, my biopsy was negative and my Celiac Panel was positive. That is why I am confused.

[jayhawkmom]

This is the way I look at it.... your intestinal tract is something like 22 feet long. (probably longer, I can't remember for sure) And, the endoscope can only get "so far" into the duodenum. There is no way possible for a doctor to biopsy your entire small intestine. They take 5-10 *tiny samples* and if there isn't any obviously damage in those 5-10 samples, they say it's negative.

However.... negative is not the correct term. They should say, "not positive" which is NOT the same thing as negative.

If they don't see any of the villi damage, that means that you aren't in the "end stage" of the disease yet, or that your damage is patchy and sporadic. It does NOT mean you don't have Celiac Disease. If they DO see the damage, there is no question about it.

The best indicator whether or not you should be eating gluten is your response to a gluten free diet. If it makes you sick... don't eat it. Period. =)

[ostrich]

[Noatak]

jayhawkmom....that was an excellent explanation! You sound better than most doctor's out there!

Ga girl....this is why doctor's should not rely solely on a biopsy to diagnose CD! Unless you are at end stage and sick as a dog, and the doctor gets lucky and hits a damaged area, you will end up with a negative biopsy and question everything else. If your bloodwork is elevated, there is something going on with gluten in your body. Try the diet and really stick with it. If you are gluten sensitive or true CD, you will feel 100% better and have your answer. Trust your instincts.

Mrs. P.....I am so glad your MIL likes GF cooking! I get that all the time...I make something GF and people act like it's a huge surprise it actually tastes good! My MIL and SIL are coming for a visit soon and they will be eating GF in my house. I'm sure they will learn alot and be surprised at how well we normally eat.

[Ga girl]

Thank you Noatak and jayhawkmom.

jayhawkmom that does make sense. I have never had any problems and out of the blue this hits me. I had the endoscopy about a month and a half after the symptoms started so I guess it is no where near the end stage.

[Fidissimus]

I swear - do people think our tastebuds go down the sh*tter once we're dx'd celiac? 'come on! Sorry for the language - it just really irks me...
we want good tasting food too! It's not like we're grinding up bugs and dirt to make bread. Really? What are they thinking... sigh.

Okay - sorry for the rant.
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Cheers!
Jenn

GF BD: Feb. 2001
Free of wheat, barley, rye, oats, dairy, eggs, almonds, pineapple and brewers yeast.
http://graindamaged.blogspot.com/

[aklap]

[Fidissimus]

Sorry, sorry - I didn't mean to curse... I apologize (I would've edited it out, but since Al quoted it, there's no escape )

As far as semantics go maybe they do. But I was really referring to the taste of GF foods in general. I mean we don't use foods that are so far off the scale of normal that it's going out of its way to taste "funny" or "bad". It just always surprises me when people are surprised that a GF brownie (or whatever) can taste as good as or better than a gluten filled brownie. It's only one protein we're trying to avoid here. Ah.... anyway I don't mean to badger you all with my own personal hang-ups.

Although Al I do kinda know what you mean. There've been times I've eaten things and a big red flag went up (for no apparent reason). I've put the supposedly GF food down only to find out later that it did actually contain gluten. Or the times I've ignored this internal alarm, I've paid dearly later. I don't know that it's been a bitter taste, but it's just, "something's not right"....
_________________
Cheers!
Jenn

GF BD: Feb. 2001
Free of wheat, barley, rye, oats, dairy, eggs, almonds, pineapple and brewers yeast.
http://graindamaged.blogspot.com/

[Noatak]

Fid....you are such a riot and I love your posts!!! Bugs and dirt? I think that's what I'll tell someone the next time they exclaim how good something GF is. I can reply that I bet they never knew that bugs and dirt could taste so good!

[Fidissimus]

Well, every cook has to have their secret ingredient!
_________________
Cheers!
Jenn

GF BD: Feb. 2001
Free of wheat, barley, rye, oats, dairy, eggs, almonds, pineapple and brewers yeast.
http://graindamaged.blogspot.com/