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Please Help...celiac Panel And Genetic Test


DoogiePCT

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DoogiePCT Apprentice

Hey Guys!

I am a 23 year old male with a history of low body weight (presently 5'10, 125 lbs.) although I eat a lot. I am also extraordinarily active (run 5 miles a day), although I get headaches and stomach upsets sometimes, but I feel well enough that activity remains uninterrupted. I am, and have been eating TONS of gluten. Doctors say I just don't eat enough. FALSE. I eat 3,000 calories a day on average

but my weight has been bugging me recently so I ordered my own labs through PrivateMDLABS. I have an appointment at the Celiac Center in NYC February 15th, but I ordered some labs and would like help interpreting.

The antibody tests were all strongly negative, but the genetic tests look strongly correlated as positive with Celiac:

1) Deamidated Gliadin Antibodies, IGA: 3 (reference range 0-19); Negative is 0-19; Positive is 20-30; Strong positive >30

2) Deamidated Gliadin Antibodies, IgG: 3 (reference range 0-19); Negative is 0-19; Positive is 20-30; Strong Positive >30

3) Ttg-IgA: <2 (Negative 0-3; Weak positive 4-10; positive >10)

4) Ttg-IgG: <2 (Negative 0-5; Weak positive 6-9; positive >9)

5) Endomysial Antibody IgA: NEGATIVE

6) Immunoglobulin A, Qn, Serum: 247 (70-400)

The Genetic tests (this is what scares me):

DQ2: (DQA1 0501/0505, DQBI, 02XX) POSITIVE

DQ8: (DQA1 03XX, DQB1 0302) POSITIVE

Final results:

DQA1*0301, 0501

DQB1*0201, 0302

Please help!

Thanks!

Doug


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psawyer Proficient

The genetic results say that you have the two classic genes associated with celiac disease. You are at risk of developing celiac disease at some point in the future, although only a minority of people do.

Your antibody tests clearly indicate that you do not have it today. Your IgA serum is normal, so the results of the other tests are valid.

domesticactivist Collaborator

I'm not a dr and can't interpret results, but it seems to me that there is a range in which one doesn't have full on Celiac Disease reactions, but where they would be at high risk, and potentially doing damage that isn't showing up yet. If I were in your shoes, especially if experiencing symptoms, I think I'd just go gluten-free to prevent further/new damage from becoming a problem down the road.

starrytrekchic Apprentice

I'd go ahead and give the diet a try. If your headaches and stomachaches are due to gluten, they should start clearing up in a few days (with lots of ups and downs--but slowly trending for the better over several months) assuming you follow the diet perfectly. If you do have celiac, it might take a few months for you to start gaining weight, so I'd give it a 6 month trial.

DoogiePCT Apprentice

Thanks. I am gonna wait to start the diet, only because I'd like to have a biopsy in Feb, so I'm actually gonna eat more gluten then I ever have in my life. That way, if I've got it. The biopsy will definitely show it, right? I think for the sake of my family and my doctors not thinking gluten-free is a weight loss tactic (they really think I just don't eat), I'd like to have a positive test result I can stick in their faces.

Doug

I'd go ahead and give the diet a try. If your headaches and stomachaches are due to gluten, they should start clearing up in a few days (with lots of ups and downs--but slowly trending for the better over several months) assuming you follow the diet perfectly. If you do have celiac, it might take a few months for you to start gaining weight, so I'd give it a 6 month trial.

cassP Contributor

Thanks. I am gonna wait to start the diet, only because I'd like to have a biopsy in Feb, so I'm actually gonna eat more gluten then I ever have in my life. That way, if I've got it. The biopsy will definitely show it, right? I think for the sake of my family and my doctors not thinking gluten-free is a weight loss tactic (they really think I just don't eat), I'd like to have a positive test result I can stick in their faces.

Doug

dont let what others think dictate how you should eat. the Gluten Free Diet is NOT a weight loss diet- for me, and others, we HAVE lost weight.. but other people (with the classic "D" and dropping weight symptoms) will actually PUT ON weight.

i would agree that after the biopsy you should try the diet- as long as you're eating fresh healthy balanced foods- i think MOST people could benefit from removing Gluten or even just Wheat from their diet.

or maybe- if you dont have a positive biopsy.. and you feel fine- maybe you should just do a Paleo/wheat free type diet?? IF you dont have Celiac- but you have the genes-> a wheat free diet could still be a great idea for you-> ive read studies that have shown that Wheat Germ Agglutin can trigger Gluten intolerance.

so, you may never develop celiac but if you were to eat a typical american diet with wheat at every meal- you could bring it on (imho).

Mari Contributor

DQA1*0301, 0501

DQB1*0201, 0302

The Wikipedia articles on HLA-DQ, HLA-DQ2 and HLA-DQ8 are quite good. The DQB alleles are the most significant for celiac disease. Using the molecular serology terminology you are a DQ2 (0201) and DQ8 (0302). The DQ8 is a subcategory of DQ3.

My DNA analysid (DQA not done) DQB1 0302 and 602. We share the same main celiac allele, 0302 so we are both DQ8. My 0602 allele is a subcategory of DQ1, DQ6.


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salexander421 Enthusiast

Thanks. I am gonna wait to start the diet, only because I'd like to have a biopsy in Feb, so I'm actually gonna eat more gluten then I ever have in my life. That way, if I've got it. The biopsy will definitely show it, right? I think for the sake of my family and my doctors not thinking gluten-free is a weight loss tactic (they really think I just don't eat), I'd like to have a positive test result I can stick in their faces.

Doug

I think it's a good idea that you're going to go ahead with a biopsy before starting the diet. The blood tests for celiac have about a 30% chance of being false negative. With having both DQ2 and DQ8 genes this puts you at a higher risk of developing celiac disease. If I were you I would get all the testing out of the way and then try the diet and see how it makes you feel. Even if everything turns up negative, if you have a positive response to the diet then that should be your answer. Hope everything goes well at your next appointment!

Skylark Collaborator

Thanks. I am gonna wait to start the diet, only because I'd like to have a biopsy in Feb, so I'm actually gonna eat more gluten then I ever have in my life. That way, if I've got it. The biopsy will definitely show it, right? I think for the sake of my family and my doctors not thinking gluten-free is a weight loss tactic (they really think I just don't eat), I'd like to have a positive test result I can stick in their faces.

The biopsy will show it if you're celiac. It is possible to be non-celiac gluten intolerant and still have malabsorption issues. The only way to tell would be to try the diet. With the DQ2.5/DQ8 genetic results it wouldn't surprise me in the least if you feel better off gluten. Even if you are not celiac now, and you can use your genetic risk factors to justify the diet for family. Tell them you get a little sick from wheat so you're doing it as a preventative measure. You might generally feel better, find those occasional headaches and stomachaches gone, and that you can gain the weight you're looking for. Good luck!

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    • Wends
      Hopefully the biopsy gives a conclusive and correct diagnosis for your daughter. Im in the UK and have been in the situation a few years ago of trying to rule celiac in or out after inconclusive results. Many symptoms pointing to it including the classic symptoms and weight loss and folate and iron deficiency. You have to play a waiting game. I also had the label of IBS and likely food allergy. Genetic test showed low risk for celiac but not no risk. It sounds like the Gastroenterologist is on it and hopefully will diagnose what it is correctly. Food hypersensitivity (allergy) can also cause similar symptoms and inflammation as well as mimicking IBS. Milk / dairy and wheat (cereal grains) being the biggest culprits. The “oesophagitis” and “gastritis” you mentioned can be caused by another gastrointestinal disorder called “eosinophilic gastrointestinal disorders”. These are named depending on which part of the gastrointestinal tract is affected. For example eosinophilic oesophagitis, eosinophilic gastritis, eosinophilic gastroenteritis, and more rare eosinophilic colitis. They are antigen (allergen) driven. When the blood test measuring anti-ttg antibodies is positive in absence of a positive ema test - which is more specific to celiac, this can also suggest food hypersensitivity (allergy). Usually delayed type allergy similar to celiac but not autoimmune if that makes sense. In this case the ttg antibodies are transient. Which happens. I’ve first hand experience. For info, evidence of villous atrophy too can be caused by food hypersensitivity. Not just by celiac disease. In Egid disorders the six food elimination diet, under a dietitian and gastroenterologist care, is the dietary protocol to figure out the culprit or culprits. Sometimes only two food elimination diet is used at first. The number one culprit is milk protein / dairy. Followed by wheat, eggs, soy, fish and seafood, and nuts. Most are only reactive to one food group or two. Most are only reactive to milk. Hope this is a helpful reply.
    • Bennyboy1998
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