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jasonD2

Genetic Test Results And Other Notables

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What exactly do the genetic tests mean? I just found out that I carry one of the two genes which means there is a 50% chance of developing celiacs or a 50% chance i have it. Actually, is this even true? I read somewhere that you need both genes to develop the disease..something about the 2 proteins combining to form the anti-gliadin antibody. How predictive is this test? My doc wants to do the biopsy but I dont know if i want to eat gluten for a month straight or even longer. all i know is that im doing better w/o gluten

I told my mother about this and suggested that she get tested and she is being very stubborn and told me not to worry and that i dont have celiacs. her attitude is that there's a 50% chance something else will kill me and i should just live my life (and also see a psychiatrist since im way too self absorbed)

I feel like i cant get thru to her cause shes very old school and doesnt comprehend what ive been going thru. she says she lives her life, goes for colonoscopies every year and that shes fine. meantime my great grandmother died from stomach cancer and my grandmother died from an undiagnosed stomach illness. I would also like to tell my cousin and aunt to get tested but I know they will give me s hit about it too.

I just don't know what to do or who to believe anymore and am so exhausted from this. all i know is that I cant live my life avoiding restaurants, worrying about what ingredients are in my food and becoming an outcast. Maybe if i got violently ill from gluten the way some folks do, i would feel differently about it, but the reality is if i eat something with wheat in it I feel fine.

I'd appreciate your thoughts


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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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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Remind us, what was the reason you went gluten free to start with? There must have been a reason?

It's tough, but in the end a lot of people here on the board have just had to make peace with the fact hat family members don't want to get tested, because they don't want to know and change their life style.

The genes- you only need the one. But about 30% of the population carry the gene/s, and only about 1% develop celiac. So the genes don't tell you all that much.

Pauliina

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Well I found out that Celiac or gluten sensitivity can cause chronic constipation. i originally assumed celiac was only violent diarrhea, rashes, pains, anemia, etc. so i had the enterolab stool test and got a slightly elevated antibody result. so i decided to try the gluten-free diet and its now been 8 months. i feel a little better but not 100%- but at least im not as constipated as i used to be. i assumed i was just gluten intolerant since all my issues stemmed from a traumatic digestive event (and prior to that i was perfectly healthy), but being the neurotic person i am and not being able to leave anything alone i decided to get the genetic test and am now considering the gluten challenge for the blood test. i actually took the blood test 5 years ago right after my stomach illness and it was negative but i dont know where i stand now.


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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Jason, that consitpation may very well one day develop into daily D. Meanwhile the antibodies are attacking the rest of your body.

For some of us the only way we can get our heads around a diagnosis is by the biopsy. Unfortunately those do miss some of us or we can be told that the changes seen are not a result of celiac, or that they are preceliac and that we should keep eating until the damage is more complete. The biopsies can be hit and miss, but if you don't feel you can tolerate the gluten-free diet without one it might be your option. If you do decide to biopsy please make sure you go on a full gluten diet for at least 3 months first. While I am not a big fan of the 'poison the patient to be sure' form of diagnosis for some it is the only way to ensure they have the motivation to stick to the diet. Only you know if that route is the right one for you.

I know the diet is hard and it is very restricting which can make it very hard on us. The quest for diagnosis can be long and damaging. I hope you are able to get a firm diagnosis, it can also make it easier to get family members on board.

When you did the Enterolab panels did you also do the ones for soy, casien, egg and yeast? For some of us casien in particular can be an issue and healing will be incomplete if we are still consuming the other proteins that we have become reactive to.


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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