Celiac.com Sponsor (A1):



Celiac.com Sponsor (A1):


Archived

This topic is now archived and is closed to further replies.

Kara'sMom

Oh My Goodness...i Probably Have Celiac Too!

Recommended Posts

I just got back from my endoscope. This is what it says:

During the procedure we found the following:

Scalloping in the third part of the duodenum compatiable with celiac sprue (they took a biopsy)

and I won't write the rest but OH MY GOODNESS. I had a negative blood test but he said that basically didn't matter.

Has anyone here had a neg blood test but a postive biopsy??? I am freaking out here. My DD has handled it wayyyyyyy better than I could.

Mary


Kara'sMom

DD age 10

diagnosed celiac 10/07

Share this post


Link to post
Share on other sites

Join eNewsletter


Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


I just got back from my endoscope. This is what it says:

During the procedure we found the following:

Scalloping in the third part of the duodenum compatiable with celiac sprue (they took a biopsy)

and I won't write the rest but OH MY GOODNESS. I had a negative blood test but he said that basically didn't matter.

Has anyone here had a neg blood test but a postive biopsy??? I am freaking out here. My DD has handled it wayyyyyyy better than I could.

Mary

Wow. I can see where you would be surprised. Did you have any symptoms prior to testing or just get tested because your DD has it?

I have heard there is a high rate of false negatives with the blood test results.

I'm sure you will be fine. You just need time to let it sink in. At least your already past the hardest part with knowing more about gluten than most people do when first getting diagnosed. Not that I'm trying to make light of it, it's not an easy diet at all and it takes time to get used to eating and cooking differently. But after a few months it will be a lot easier. And I'm sure you will find that some symptoms you wouldn't even suspect will go away due to not eating gluten. I've had so many positive things come out of getting rid of gluten from my diet. Feeling better is well worth the small sacrifice of not eating some foods. Hang in there!


Joni

Dx'd with Celiac Disease 8/01/07

Share this post


Link to post
Share on other sites

Join eNewsletter

Yeah, there are lots of people here who had negative blood test/positive biopsy.

Furthermore, if you study people's signatures, you will see that the real-world occurance of 1st degree relatives that have Celiac is MUCH higher than the "studies" that have shown a 10% occurance.

In other words, I think that is one more thing the medical community needs to catch up on. Celiac is much more common in families than what they say.

(((hugs)))


-Sarah

--Son, Lucas, age 7. Gluten-free since May 2007

--Son, Ezra, age 5. Gluten-free 10/13/07. Bipolar tendencies, massively improved on gluten-free diet! He's also allergic to a jillion antibiotics.

--My mother has Celiac Disease, dx'ed by Positive Blood Tests and Biopsy. Diagnosed Sarcoidosis 6/08.

--Myself, Gluten-free since 8/07

Time heals all hurt of heart... but time must be won.

Share this post


Link to post
Share on other sites

Join eNewsletter

I had a positive biopsy and a negative blood test. I think it's very common.

Mary/Kara's mom, you can do this. Actually, as an adult it may be harder (or easier) than for kids. But at least you don't have to worry about the kids at the lunch table trying to get you to trade a sandwich or friends at the dorm trying to get you to eat pizza and beer! I think I have it much easier than my 14yo son.

~Laura


Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

Share this post


Link to post
Share on other sites

Join eNewsletter

Wow. I can see where you would be surprised. Did you have any symptoms prior to testing or just get tested because your DD has it?

I have heard there is a high rate of false negatives with the blood test results.

I'm sure you will be fine. You just need time to let it sink in. At least your already past the hardest part with knowing more about gluten than most people do when first getting diagnosed. Not that I'm trying to make light of it, it's not an easy diet at all and it takes time to get used to eating and cooking differently. But after a few months it will be a lot easier. And I'm sure you will find that some symptoms you wouldn't even suspect will go away due to not eating gluten. I've had so many positive things come out of getting rid of gluten from my diet. Feeling better is well worth the small sacrifice of not eating some foods. Hang in there!

Hey..I have ZERO symptoms except for acid reflux which my entire family has and even that is mild. If I can make some good bread...I think I"ll be ok. I gotta have garlic bread with my spaghetti and I LOVE cookies and cakes..whereas DD could care less.

When I came home and told Kara that I probably have it..she's like...."it's me and you". :-)

I PRAY my son doesnt' have it as well. He has always been a MUCH better eater than Kara and would have a much harder time elminating sweets, etc....but I can't even think about that now.

I gotta go lay down for the night. I'm still tired from being knocked out and also from not eating since yesterday at 7pm. I just had a small bowl of soup b/c MAN my throat is sore and DRY.

I'll check back tomorrow. Thanks for the support. If ya'll hear a loud wail....it's me with the positive biopsy results. LOL

mary


Kara'sMom

DD age 10

diagnosed celiac 10/07

Share this post


Link to post
Share on other sites

Join eNewsletter

Since my daughter's official diagnosis, I consider myself self-diagnosed. It is actually a bit easier having two of us in the house: Julia has a built-in gluten-free buddy, I feel better than I ever have, and I can eat dairy again (I've had "IBS" and have been severely lactose intolerant and anemic for YEARS). We can vent to each other about missing garlic bread. I'm pretty sure I'm going to have to learn to bake just so I can have garlic bread again. :blink:

Share this post


Link to post
Share on other sites

Join eNewsletter

I'm sure it's impossible to believe this now, but soon you won't even crave bread. In the beginning I was dying for it, or a good bagel, but now I don't even care. What I do enjoy is muffins (although haven't tried that since going soy-free) and yummy banana bread.

Breakfast was definitely the hardest meal for me. These days I usually eat fruit.

But to give you a glimpse of how much easier it gets, today I had to attend a business breakfast and watch everyone eat muffins, donuts and bagels. Didn't even bother me. I just had some orange juice and delicious grapes. yeah, sounds far-fetched to hear it now, but hang in there.

Also, gluten-free brown rice pasta is YUMMY! You won't even notice a difference. I'd avoid the corn pasta.


"I'm not telling you it's going to be easy. I'm telling you it's going to be worth it." - Art Williams

Currently gluten-, casein-, soy- and nightshade-free.

Share this post


Link to post
Share on other sites

Join eNewsletter

Oh, my. I know you must be shocked....freaked out....sad. At least you can be gluten-free with your dd. My dd's illness and subsequent diet change are what led first me, and then my ds, to figure out that we, also, can't do gluten. It's easier when you have company. Good luck to you!

Rhonda

Share this post


Link to post
Share on other sites

Join eNewsletter

I'm sure it's impossible to believe this now, but soon you won't even crave bread. In the beginning I was dying for it, or a good bagel, but now I don't even care. What I do enjoy is muffins (although haven't tried that since going soy-free) and yummy banana bread.

Breakfast was definitely the hardest meal for me. These days I usually eat fruit.

But to give you a glimpse of how much easier it gets, today I had to attend a business breakfast and watch everyone eat muffins, donuts and bagels. Didn't even bother me. I just had some orange juice and delicious grapes. yeah, sounds far-fetched to hear it now, but hang in there.

Same with me! I used to go to business breakfasts and be the one who went back for seconds of bagels, croissants, muffins. (Can you say "addicted"?) Now I go and get the best strawberries, grapes and melons. And go back for seconds of the fruit.

I also go to potlucks and watch other people eat and I'm not even tempted. But I do make muffins to have a quick breakfast (not every day- I freeze them and thaw as needed).

~Laura


Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

Share this post


Link to post
Share on other sites

Join eNewsletter



Join eNewsletter