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georgie

My Friends Results

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I met my friend today. She said she does NOT have Celiac Disease. Her blood tests were positive, but her colonoscopy was negative - and her Specialist told her she does NOT have celiac disease.

I didn't think this was right so told her to read this site. Any words of wisdom anyone ? She has lots of symptoms of bloating and malnourishment ( super skinny)


Diagnosed May 2006 - Hashimotos Thyroid after being diagnosed in 1977 and told it didn't matter.

Diagnosed June 2006 with adrenal insufficiency.

Diagnosed June 2006 as Gluten Intolerant after I failed the Challenge Diet. Negative blood test.No biopsy.

Diagnosed June 2006 as B12 low. Needed weekly injections for a year.Still have them every 2 weeks.

Trialled Dairy Free Diet and reacted positively to that challenge in January 07.

News Flash! Coeliac Genetic Testing done April 08 . DQ2 Positive !

Diagnosed July 2010 FODMAP. Limits on Fructose, lactose, polyols, fructans. NO ONION! But I can have hard cheese, butter and cream again!!!

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I think her specialist may have taken one sample, or maybe doesn't even know what he/she is looking for. If she had a positive blood test, then she definitely should go gluten free. A gluten free diet can't hurt her, yet it could make her feel so much better. A positive blood test would be all I needed to go gluten-free. It's sad, yet many celiac's have false negatives.


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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If her blood test was positive, she has celiac.

Also, a colonoscopy is a scope in the large intestines, and an endoscopy will test the small intestines where celiac can be diagnosed with flattening of the villi and biopsy's can be taken.

Your friend has celiac.


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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It doesn't make any sense to me why she was told, with positive bloodwork (do you know what her numbers are?), that she doesn't have celiac. And why would they do a colonoscopy and not an endoscopy? I think she needs to realize that she has the disease, and then she needs to get a new doctor!

Definitely encourage her to come here and ask questions and get support--it sounds like she's going to need it.


Dx'd with lymphocytic colitis 1/07

Dx'd by Enterolab 3/07--+IgA, +Ttg, DQ2 and DQ8

Dx'd celiac by Dr. Lewey 4/07--without +blood or biopsy

gluten-free 3/7/07

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Yep. She has celiac disease.

I can't remember which prominent celiac doctor said this, but he said that a positive celiac blood test is like having a positive pregnancy test. You can't be a little bit pregnant, and you can't be a little bit celiac.

I hope she decides to go on the gluten-free diet, AND get a new doctor.

Nancy


The person who says it cannot be done should not interrupt the person who is doing it.

~Chinese Proverb

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Hi,

If your friend had a colonoscopy, that would tell nothing, because the colon is not where the characteristic damage from celiac occurs.

It occurs in the small intestine, not the large intestine, which is what is checked with the colonoscopy. Even if she got mixed up and meant endoscopy not colonoscopy, it is possible to have negative results becuase the dr. took the sample from the wrong place / a place that wasn't damaged. The damage can be patchy not all over.

If her blood tests were positive she definitely has celiac. She needs to be on the diet to start getting well. She needs a new dr.

Lucky her to have such a considerate friend.

Sally


Sally

Aussie living in Philippines, Manager, Triathlete, Mum to 2 dogs, 2 cats & fish

___________________________________________________________________________________

Hypothyroid, diag. 2000, desicated thryoid 3 grains + T4 50 mcg.

Pituitary adenoma, 2002 - no treatment (no followup yet)

Polycystic, 2000 - no treatment

IBD by biopsy - end 2006 (cause not investigated)

Suspected Gluten intolerant/celiac - not diagnosed

Gluten Free - start Dec 06 (big improvement in tummy troubles, though still not 100%..)

Allergies suspected to Rice, Mango, Chicken, some fish (though testing)... still trying to work it all out.

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Thanks for all your help. I am a bit confused myself as I am sure she said colonoscopy but perhaps I was wrong. But she was doubting me as she saw a top specialist about this. I will urge her to change Drs.


Diagnosed May 2006 - Hashimotos Thyroid after being diagnosed in 1977 and told it didn't matter.

Diagnosed June 2006 with adrenal insufficiency.

Diagnosed June 2006 as Gluten Intolerant after I failed the Challenge Diet. Negative blood test.No biopsy.

Diagnosed June 2006 as B12 low. Needed weekly injections for a year.Still have them every 2 weeks.

Trialled Dairy Free Diet and reacted positively to that challenge in January 07.

News Flash! Coeliac Genetic Testing done April 08 . DQ2 Positive !

Diagnosed July 2010 FODMAP. Limits on Fructose, lactose, polyols, fructans. NO ONION! But I can have hard cheese, butter and cream again!!!

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Damage in the small intestine is often patchy, and easily missed. I read posting the other day on another forum where the endoscopy was negative, but she got a capsule endoscopy with camera and the pictures showed partially villous atrophy with typical changes , and the next biopsies showed celiac, probably because they happened to take samples from the right places.

nora


gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.

daughter officially diagnosed celiac and casein intolerant.

non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5

Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet

Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

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