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jasonD2

No One On Moms Side Has Celiac

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This is lousy for me to say but I am almost disappointed that none of the women on my moms side have celiac...they all just got tested. I feel like im all alone in this and still dont know where its coming from..I guess my fathers side? Why am I the only one that got the bad side of the stick? sorry for sounding horrible


Endoscopy & blood panel all negative 12/09 after being strict w/ gluten free diet

As of 8/09 - Candida Overgrowth, C.difficile overgrowth, elevated fecal anti-gliadin, elevated putrefactive SCFA's

Developed severe lactose intolerance, IBS and food sensitivities in 02 after contracting Giardia from a river in Oregon

Had negative celiac blood work in 02

Elevated stool anti-gliadin Ab (21 with 10 being cutoff for normal) - 2008

Positive for DQ8- 2008

Tested high positive for egg, dairy, soy, ginger, mustard - 2008

Lactulose/Mannitol (leaky gut) test indicated slight intestinal permeability

Improved with gluten free diet but still have spastic constipation

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Hi Jason:

I can think of worse things ... like fighting 5 parasites at the same time. You've been through the wringer with gut infections. With celiac disease, 6 food allergies, after 5 bacterial, 2 parasitic and candida infections, tracing who gave me celiac disease is the least of my worries. I pm'd you about my latest (acid production test results, treatment for h. Pylori and ongoing battle with d-frag). My new doc also recommended a good doc in NYC who deals with stomach acid, intestinal critters and food allergies, after I told her I had a friend 'back East'. (I have no idea where you live, but you mentioned relatives in FLA.)

SUE


Gluten, dairy, soy, egg, cane sugar, vanilla and nutmeg free. Enterolab diagnosed gluten/casein intolerant 7/04; soy intolerant 8/07. ELISA test diagnosed egg/cane sugar IgG allergies 8/06; vanilla/nutmeg 8/06. 2006-10 diagnosed by DNA Microbial stool tests and successfully treated: Klebsiella, Enterobacter Cloaecae, Cryptosporidia, Candida, C-diff, Achromobacter, H. Pylori and Dientamoeba Fragilis. 6/10 Heidelberg capsule test diagnosed hypochloridia. Vitamin D deficiency, hypothyroiditis, hypochloridia and low white blood cells caused vulnerability to infections. I now take Betaine HCl, probiotics, Vitamin D and T3 thyroid supplement to maintain immunity.

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This is lousy for me to say but I am almost disappointed that none of the women on my moms side have celiac...they all just got tested. I feel like im all alone in this and still dont know where its coming from..I guess my fathers side? Why am I the only one that got the bad side of the stick? sorry for sounding horrible

Not everyone who has the celiac associated genes will develop the disease. Where you got the genes from is not all that important. The important thing is you are doing the best you can to overcome the issues that you have. There is also the issue of false negatives on testing. If family members have health issues just because they had a negative blood test doesn't mean they don't have celiac.

I hope you are feeling better yourself by now and kudos to you encouraging your loved ones to be tested.


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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I understand you're looking for a little validation, but of course it's good news that others in your family are not celiac. With celiac, there seems to be a necessity for a triggering event. In your case it could have been the Giardia infection. Developing celiac seems to take some time so the blood work does not always come back positive for celiac right away.

Everyone with a chronic disease asks those kinds of questions. Feeling like you got the short end of the stick sometimes is normal but you have to find a way of avoiding feeling that way all the time. It's a really hard, painful way of looking at things, to make yourself out to be shortchanged. I always feel better if I focus on the positive aspects of my life rather than the celiac diet (and my asthma and frequent bronchitis).

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This is lousy for me to say but I am almost disappointed that none of the women on my moms side have celiac...they all just got tested. I feel like im all alone in this and still dont know where its coming from..I guess my fathers side? Why am I the only one that got the bad side of the stick? sorry for sounding horrible

Jason....just because no one tested positive on the antibody test, doesn't mean they don't have Celiac. It could be a case of latent Celiac or silent Celiac with negative antibody testing. Happens all the time. You are supposed to be tested at least every 2 years, with a diagnosed family member as history. If they think that they can have 1 blood test and call themselves safe, it doesn't work that way.

The smarter thing to do would be for them to do gene testing, along with the antibody testing, for obvious reasons. What about your father's side of the family? Is your father living?

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Sorry you are feeling 'down' but if you have a copy of the test which showed the DQ8 it would tell you if you inhertited one or two copies of that DQ gene. We get one from our mom and one from our dad as you know. The DNA genetic marker test is easier to read but if you had the molecular serology test from Prometheus Labs it is harder to intrepret but you can post the results here and maybe we can help you figure it out.


DQ6/DQ8

HLA-DQ B allele 1 *0602: HLA-DQ B allele 2 *0302

Gluten free and Cow Dairy free since 2006

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Oh no what i meant was they dont have the genes for celiac


Endoscopy & blood panel all negative 12/09 after being strict w/ gluten free diet

As of 8/09 - Candida Overgrowth, C.difficile overgrowth, elevated fecal anti-gliadin, elevated putrefactive SCFA's

Developed severe lactose intolerance, IBS and food sensitivities in 02 after contracting Giardia from a river in Oregon

Had negative celiac blood work in 02

Elevated stool anti-gliadin Ab (21 with 10 being cutoff for normal) - 2008

Positive for DQ8- 2008

Tested high positive for egg, dairy, soy, ginger, mustard - 2008

Lactulose/Mannitol (leaky gut) test indicated slight intestinal permeability

Improved with gluten free diet but still have spastic constipation

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Oh no what i meant was they dont have the genes for celiac

Odd. Isn't this the side of your family with all the GI issues? Maybe you were found on the doorstep? :)


 

 

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Oh no what i meant was they dont have the genes for celiac

Neither do I. ;)

I sure do have celiac though. :)

Your DQ8 may have come from your fathers side. But you can have celiac and not have either DQ2 or DQ8.


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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