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Self Diagnosed Newbie

Jess and Drez

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Jess and Drez Newbie
Jess and Drez
Posted

This is my first time posting in the forum, but Ive been reading your stories for weeks,seeing the same symptoms and concerns that I have. Had bloodtests and many drs visits and always came up with nothing. All of my symptoms started a yr ago after my son was born and drs always claimed my body is just healing and changing from childbirth and that I have IBS. I knew in my heart that "something" more just wasnt right, thats when I found out about celiac and just went thru the list checking off almost every symptom in the book. I then decided to go ahead and try a gluten-free diet for both me and my son. Its obviously working, Ive been accidentally glutened a couple times and all my symptoms came back again. My question though is should I have any kind of genetic testing done, for myself, my son or mother(who has been struggling for yrs with many of the same symptoms)? I feel good enough on a gluten-free diet to not feel the need for a biopsy or a dr to tell me I officially have it, but Im mainly concerned about my 1 yr old son and if this is something I could pass to him or future children. Thank you in advance for any help!

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VydorScope Proficient
VydorScope
Posted

How long have you been gluten-free for?

You will need to go back on gluten for any test to be valid, and I usually hear at least 8 weeks on a normal gluten diet before testing. So the big question you need to answer is do you want the label bad enough to face all that again? Keep in mind, you could go through all of that and still get a false negative.

Celiac is genetic, so your child and mother might have it, or might not. If your mom is having symptoms she should ask her doctor about the blood test.

1desperateladysaved Proficient
1desperateladysaved
Posted

How long have you been gluten-free for?

You will need to go back on gluten for any test to be valid, and I usually hear at least 8 weeks on a normal gluten diet before testing. So the big question you need to answer is do you want the label bad enough to face all that again? Keep in mind, you could go through all of that and still get a false negative.

Celiac is genetic, so your child and mother might have it, or might not. If your mom is having symptoms she should ask her doctor about the blood test.

The Gluten Free Society has a test by mail. They are on the web. THERE IS NO NEED TO EAT GLUTEN FOR THE TEST. My MD backed the test even when my antibody test was negative. She said that the genetic test was the one to believe. The cost of the test was $385.

I had 4/4 alleles for gluten intolerance. They test for Celiac and gluten intolerance genes, if I have that straight. Since I was 4/4 I could discover that both of my parents have a gluten problem. My children would each have 2 alleles which meant they should be gluten free.

I mainly did the test because of pressure from my family. I just felt I could not eat this way without proof.

Yesterday, the adminstrator posted something about this kind of test.

Jess and Drez Newbie
Jess and Drez
Posted
  • Author

My son and I have been gluten-free for over a month now. I dont need the diagnosis bad enough myself as I see Im already improving on the diet. It still does feel strange saying Im celiac when I havent been properly diagnosed and some people think Im crazy for self-diagnosing! I just want my mother to see that she shows the same symptoms and will try and do something about it. Would you suggest that she have a biopsy since she hasnt gone gluten-free yet or should she try the diet 1st???

VydorScope Proficient
VydorScope
Posted

My son and I have been gluten-free for over a month now. I dont need the diagnosis bad enough myself as I see Im already improving on the diet. It still does feel strange saying Im celiac when I havent been properly diagnosed and some people think Im crazy for self-diagnosing! I just want my mother to see that she shows the same symptoms and will try and do something about it. Would you suggest that she have a biopsy since she hasnt gone gluten-free yet or should she try the diet 1st???

If she wants a dx, she should do it right now. The more damage done, the easier the dx. The more healing, the harder it gets.

Call it "Gluten Intolerance" if you want, that is what many docs call this condition if you get neg test, but have all the symptoms and are made better by the diet. :)

GFinDC Veteran
GFinDC
Posted

Genetic testing can show the presence of genes for celiac, but having the genes does not mean you have celiac. Many people have some or one of the genes but don't have the condition.

If your mother wants to be tested she should stay on gluten and get the blood antibody tests done. The antibodies are a darn good indication something is going on.

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