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Anyone Get The Saliva Genetics Test Email And Try It Yet?

crampy girl

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crampy girl Apprentice
crampy girl
Posted

Just wondering if anyone has done the saliva genetics test. My celiac panel came back neg. but I get bloating D and horrible pain when I go off the gluten diet. I just started it Aug 1 out of desperation. Am also lactose intolerant and vit d def. But no other def. My poop floats when I eat gluten and get D, yuck I know, but I think that means malabsorption?

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uafnanook2001 Newbie
uafnanook2001
Posted

Just wondering if anyone has done the saliva genetics test. My celiac panel came back neg. but I get bloating D and horrible pain when I go off the gluten diet. I just started it Aug 1 out of desperation. Am also lactose intolerant and vit d def. But no other def. My poop floats when I eat gluten and get D, yuck I know, but I think that means malabsorption?

I had the saliva test and it came back negative, too. I've heard you could still be gluten intolerant, just not have the gene to get the actual celiac sprue disease. Like you, I get horrible when not on a gluten-free diet and, like you, I am lactose intolerant. My mom and my aunt both have the celiac sprue disease and so I was aware of it but it didn't seem to manifest in me until I turned 50, a few years ago. And, again as far as I understand, the yucky poop you describe is the result of the malabsorption, for sure. Of course, you could always try for a medical diagnosis, but, short of that, if you feel better on a gluten-free diet, I say just go with it.

cassP Contributor
cassP
Posted

the biggest proof you need is how you feel on the diet.

you absolutely have to have the genes there to have the disease. BUT there's like 27 genes possibly involved!!! most docs here ONLY test for the "classic" DQ2 and DQ8. but there's more, AND there's members on here with Celiac and different DQ genes.

i did a genetic test through Enterolab. they test for only 9 out of the 27 known genes... and they ONLY test for part of the chain. they are not diagnostic, but im happy i did mine

again, you may not get a definitive answer on a gene test- because you might have DQ genes that they only test for in Europe.... and remember too that blood tests & biopsies have been false negative for people before.

so, i know it can be hard to get motivated- but how you feel on the diet is proof and validation- you dont have to second guess yourself. and also keep in mind that you may have to eliminate other foods in addition to gluten.

good luck :)

crampy girl Apprentice
crampy girl
Posted
  • Author

the biggest proof you need is how you feel on the diet.

you absolutely have to have the genes there to have the disease. BUT there's like 27 genes possibly involved!!! most docs here ONLY test for the "classic" DQ2 and DQ8. but there's more, AND there's members on here with Celiac and different DQ genes.

i did a genetic test through Enterolab. they test for only 9 out of the 27 known genes... and they ONLY test for part of the chain. they are not diagnostic, but im happy i did mine

again, you may not get a definitive answer on a gene test- because you might have DQ genes that they only test for in Europe.... and remember too that blood tests & biopsies have been false negative for people before.

so, i know it can be hard to get motivated- but how you feel on the diet is proof and validation- you dont have to second guess yourself. and also keep in mind that you may have to eliminate other foods in addition to gluten.

good luck :)

Thanks I ordered the enterolab test to double check. Since I have been gluten free I have had two episodes, both after accidental gluttening, corndogs and cream of tomatoe soup by

cambells. I just want to be sure this is what's wrong with me, as I am starved and sick of it after just 6 weeks! I am thinking of purposely eating ritz to see what happens.

Skylark Collaborator
Skylark
Posted

Thanks I ordered the enterolab test to double check. Since I have been gluten free I have had two episodes, both after accidental gluttening, corndogs and cream of tomatoe soup by

cambells. I just want to be sure this is what's wrong with me, as I am starved and sick of it after just 6 weeks! I am thinking of purposely eating ritz to see what happens.

Easy. you'll get sick. :ph34r:

The celiac blood tests aren't very good. I hope Enterolab gives you the answer you need to trust your body and stay gluten-free. The genetic tests are not diagnostic, and you can get very sick from gluten or even be celiac without the so-called celiac genes. As far as starved, are you not finding good food to eat or just generally more hungry? A lot of people have big appetites after they go gluten-free and the damage starts to heal. They're craving the nutrition that they can suddenly absorb.

crampy girl Apprentice
crampy girl
Posted
  • Author

Easy. you'll get sick. :ph34r:

The celiac blood tests aren't very good. I hope Enterolab gives you the answer you need to trust your body and stay gluten-free. The genetic tests are not diagnostic, and you can get very sick from gluten or even be celiac without the so-called celiac genes. As far as starved, are you not finding good food to eat or just generally more hungry? A lot of people have big appetites after they go gluten-free and the damage starts to heal. They're craving the nutrition that they can suddenly absorb.

I can't wait to get the enterolab results, if they are neg I give up and will go back to my usual eating. If I get a return of symtoms and they come more frequent, like twice a week, then I will be convinced and stop it. Of course if they are pos I will keep on the diet. I am just sick of being hungry and grumpy. I feel so starved and have lost 5 pounds in 6 weeks. Thats a lot for me since I was at normal body weight before and now am on the skinny side with my clothes falling off of me. I hate the gluten diet, makes me feel like I"m on an akins diet and I hate meat. Sorry to be so neg. I am so down and out right now. I don't know how Celiac's do it. This is complete misery for me since most of my diet before consisted of carbs, about 70%. Guess I'll have to get used to it and maybe eventually like the stuff? prob not. I only like my bagels and ritz crackers with cheddar cheese!

Thanks for your support and thoughts. I will post and let you know how things turn out. Thinking of starting a food diary. crampy girl.

cassP Contributor
cassP
Posted

NOOOO CrampyGirl.... dont get discouraged... it doesnt have to suck, we promise you!!!

Skylark is absolutely right- you do NOT have to have Celiac to be seriously ill from gluten... gluten has been linked to way too many things, including Crohns, Colitis, GERD, etc, etc...

you dont have to go on an Atkins diet or Paleo or Caveman to be gluten free... there are plenty of Celiacs out there who are vegetarians, and plenty who bake all the time- you just have to use different grains & flours. i, personally feel great on a high protein/caveman diet.... but i know a lot of Gluten Intolerant Vegetarians who feel great.

there is A LOT of food out there-

good luck, dont get discouraged :)

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Skylark Collaborator
Skylark
Posted

Carbs? Mission corn tortillas, corn chips, potato chips, popcorn, rice, potatoes, sweet potatoes, homemade cornbread, commercial gluten-free breads and pastas, rice crackers, rice cakes, quinoa, amaranth, certified gluten-free oats if you tolerate them, gluten-free Bisquik and baking mixes and all the stuff you can make from those. And that's just off the top of my head. I'm sure folks can give you other suggestions.

ravenwoodglass Mentor
ravenwoodglass
Posted

I can't wait to get the enterolab results, if they are neg I give up and will go back to my usual eating. If I get a return of symtoms and they come more frequent, like twice a week, then I will be convinced and stop it. Of course if they are pos I will keep on the diet. I am just sick of being hungry and grumpy. I feel so starved and have lost 5 pounds in 6 weeks. Thats a lot for me since I was at normal body weight before and now am on the skinny side with my clothes falling off of me. I hate the gluten diet, makes me feel like I"m on an akins diet and I hate meat. Sorry to be so neg. I am so down and out right now. I don't know how Celiac's do it. This is complete misery for me since most of my diet before consisted of carbs, about 70%. Guess I'll have to get used to it and maybe eventually like the stuff? prob not. I only like my bagels and ritz crackers with cheddar cheese!

Thanks for your support and thoughts. I will post and let you know how things turn out. Thinking of starting a food diary. crampy girl.

You can get plenty of carbs with the gluten-free diet. Thai kitchen makes some really good rice noodles if your a pasta lover. There are good gluten free bagels and Ener-g and Glutino make good crackers. Snyders has come out with a gluten-free pretzel and Glutino and Ener-g both make good ones also. Part of your being down may be gluten withdrawl as that hits a lot of us.

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