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Ryan7194

Blood Test Results

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Hi all,

I was diagnosed with IBS 4 years ago following a stomach virus. Celiac blood testing/endoscopy and colonoscopy all negative back then. Over the years my symptoms havn't improved so I went to a new specialist who started from the beginings.

New blood test results are;

Deamidated Glaidin IgA - 34 u/ml (normal <15)
Deamidated Glaidin IgG - 71 u/ml (normal <15)
Tissue Transglutamunase IgA - 98 u/ml (normal <15)
Tissue Transglutamunase IgG - <1 (normal <15)

I am going in for a biopsy in a few weeks.

Can anyone tell me if these results are normal levels for someone with celiac disease? Obviously 3 positive results point towards something.

I have never been on a gluten free diet for more than 2 weeks.

 

What happens if the biopsy comes back negative, what does this mean for my diet in the future?

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Welcome to the club!

I would say that you have celiac disease. The gold standard for a final diagnosis is usually biopsies. Make sure they take up to six samples as the small intestine is vast (size of a tennis court). Keep eating gluten until the biopsies are done. Then check out our Newbie 101 section under "Coping" to help you REALLY go gluten free (cross contamination is a big deal for us)!

Also read the University of Chicago's celiac website. They are one of the leading researcher is the US, plus, their website is pretty nice.


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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Biopsy done and dusted. The dr said there was no visable damage she could see on the scope but have to wait for biopsy results. I'm a bit worried if it comes back as negative what to do seeming my blood test results were such high positives

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I had no visible damage (I think this is common), but I had a Marsh Stage IIIB biopsy result which means moderate to severe damage.

The small intestine is vast (size of a tennis court), so damaged patches can be missed. With a high blood test result and a negative biopsy, the next step would be to go Gluten free for six months or longer.

Hang in there!


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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Like Cyclinglady said, damage is rarely visible during the endoscopy.  Sometimes there is a bit of redness, that's it.

 

With so many positive tests, and tests that are as much as six times over the normal limit, I would say that there is little doubt that you have celiac disease.  The tTG IgG does catch some celiacs, but it can miss as many as 60% of all celiacs.  Having a negative tTG IgG does not rule out celiac disease by any means.

 

This report discusses the tests (endoscopy and blood) from pages 7-12: http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf  As you can see, the tests are very specific to celiac disease.

 

If your biopsy does come back negative, which does happen to as many as 1 in 5 celiacs, it does not rule out celiac disease, it simply does not confirm the diagnosis.  Celiacs can have normal biopsies, but then they assume they are fine because not all tests are positive, so they continue to eat normally and damage their health further.  If you end up with a negative biopsy, you still probably have celiac disease and should go gluten-free.

 

If the biopsy is negative, you do have some options:

  1. Have the genetic testing done for DQ 2 and DQ8.  Over 97% of celiacs have those genes so if you don't have them there is a chance that you don't have celiac disease.
  2. Go gluten-free for at least 6 months and then retest your blood tests.  The DGP tests (deaminated gliadin peptides) are often used to test dietary compliance.  Those tests are often the first to respond to the gluten-free diet, and have often moved towards a normal result in the first 6 months.  The tTG IgA is generally slower to return to normal. It is not unusual for the tTG IgA to still be elevated after eating gluten-free for 6 or 12 months; it has usually at least started coming down in the first year gluten-free.  Do not retest sooner than 6 months because your autoantibodies may not have come down yet. Don't judge the diet's effectiveness on your symptoms before the first 6 months either.  Most people have symptoms that last a good 6 months, and some symptoms (like neuropathies, ataxia, nutritional deficiencies and anemia, comprehension issues, and arthritis) take a year or three to sort themselves out.

Good luck with the results!  :)


Nicole 

"Acceptance is the key to happiness."

ITP - 1993

Celiac - June, 2012

Hypothyroid - August, 2012

CANADIAN

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Hi all, update from me with my biopsy results which confirmed celiac disease. Hopefully now after 4 years of being told it was IBS I can get better. Very happy with my GI who actually seemed to care and knew what she was doing. Below is what my biopsy said. I'm interested in any of you guys that have been around a while and pick up anything on there that I might have missed when reading it.

MACROSCOPIC

A – GASTRIC BX – Two pieces of tissue measuring 3mm each. AE (2-1)

B – SMALL BOWEL BX – Six pieces of tissue ranging from 2-4 each. AE (6-1)

C – ILEUM – Five pieces of tissue measuring 2-3mm each. AE (5-1)

D – RECTAL BX – Two pieces of tissue measuring 1&2mm. AE (2-1/QZ/cy)

MICROSCOPIC

A – Sections show body type and antral type gastric mucosa with mild chronic gastritis. No small intestinal metaplasia is seen. Helicobactor-like organisms are not identified. There is no evidence of malignancy

B – Sections show small bowed (Duodenal) mucosa with crypt hyperplastic subtotal villous atrophy. There is a moderate chronic inflammatory infiltrate in the lamina propria including scattered lymphoid aggregates and prominent surface intraepithelial lymphocytosis. There is variable blunting of the villi. No organisms are seen. No granulomas are identified. There is no evidence of malignancy

Comment – The appearances are in keeping with celiac disease

C – Sections show small bowel (ileal) mucosa within normal limits including scattered peyer’s patches. No organisms are seen. There is no evidence of malignancy

D – Selections show colonic mucosa with scattered muciphages in the lamina propria and lymphoid aggregate. There is no evidence of malignancy

DIAGNOSIS

STOMACH: MILD CHRONIC GASTRIRIS

DUODENUM: CRYPTHYPERPLASTIC SUBTOTAL VILLOUS ATROPHY

ILEAL BIOPSY: NO SIGNIFICANT ABNORMALITY

RECTAL BIOPSY: NO SIGNIFICANT ABNORMALITY

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Thank you for the update. It does seem you found yourself a really good GI doctor. 

Now you can get to the business of healing.

Do read the Newbie 101 thread at the top of the Coping section and ask any questions you need and we will try to help in any way we can.

I hope you heal quickly.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Please post your docs name & contact info. in the Doctors forum so future people looking for a good gastro who knows what they are doing can go to this doc.

https://www.celiac.com/forums/forum/6-celiac-disease-doctors/


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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That's great he was so thorough!  Rather unusual... most have to fight to get at least 6 samples taken!

 

Well, at least you know the celiac disease diagnosis is definitely celiac disease (looks like marsh stage 3 damage - see page 9: http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf )and you can change things to get better.  :)


Nicole 

"Acceptance is the key to happiness."

ITP - 1993

Celiac - June, 2012

Hypothyroid - August, 2012

CANADIAN

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