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Is The Gentic Test For Celiac Reliable? Help Please

Northland Lady

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Northland Lady Rookie
Northland Lady
Posted

I was in chronic pain and chronic fatigue for over 10 years. About six months ago my aunt did the blood test, she has gene for celiac. her stomach biopsy was negative. She had hydrogen breath tests and found she was gluten, lactose and fructose malabsorber (intolerances)

We have a lot of the same symptoms. So I went off gluten before I had the blood test and felt so much better I can

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ravenwoodglass Mentor
ravenwoodglass
Posted

I am tired so this will be short. The best test IMHO of whether gluten is toxic to you is how you feel when it is not part of your diet. Also since you had been gluten free for months your biopsy was, sorry to say worthless. If you improve on the diet you have two choices, you can go back to eating gluten until you get tested or you can eliminate it from your diet.

As far as the gene testing goes it depends on how many genes they test for. Many companies only test for two of them and another seven are now being recognized. If like my family you have one of the rarer genes your gene test may be a 'false negative' just as blood and biopsy are if you have already gone gluten free. You do not have to be eating gluten for the gene test but you do need to for the others.

Northland Lady Rookie
Northland Lady
Posted
  • Author
I am tired so this will be short. The best test IMHO of whether gluten is toxic to you is how you feel when it is not part of your diet. Also since you had been gluten free for months your biopsy was, sorry to say worthless. If you improve on the diet you have two choices, you can go back to eating gluten until you get tested or you can eliminate it from your diet.

As far as the gene testing goes it depends on how many genes they test for. Many companies only test for two of them and another seven are now being recognized. If like my family you have one of the rarer genes your gene test may be a 'false negative' just as blood and biopsy are if you have already gone gluten free. You do not have to be eating gluten for the gene test but you do need to for the others.

Thank you very much for your answer. I appreciate it more so since you are tired.

Could you recommend a company who will do the test correctly for 7 markers? It will take a lot of saving to get the test to i want to make sure i get the correct one. As i said gluten causes me MAJOR fatigue and pain, and I have arthritis so going back onto gluten is just not an option.

Thanks

Korwyn Explorer
Korwyn
Posted
I was in chronic pain and chronic fatigue for over 10 years. About six months ago my aunt did the blood test, she has gene for celiac. her stomach biopsy was negative. She had hydrogen breath tests and found she was gluten, lactose and fructose malabsorber (intolerances)

We have a lot of the same symptoms. So I went off gluten before I had the blood test and felt so much better I can’t bear the thought of 3 months on gluten to take the stomach biopsy, my biopsy was negitive only 4 clips and i was gluten free for 5 months before the test. I was diagnosed with arthritis in my thumbs (very painful) and when I went off gluten the pain disappeared completely

I thought I had the same problem as my aunt but I have started the elimination diet and I have a major problem with potatoes I get a gassy taste, sore chest sore throat and joint aches and really bad diarrhea it seems to really upset my tummy for a week, my restless legs come back. When I went off gluten I sleep deeply for 6 hours for the first time in years, potatoes also disrupt my sleep. I have just tried white rice and gives me bad dirrehea. I have gluten intorances on both sides of the family.

Every time I google my reaction I keep getting this website, and I have a feeling I may have celiac but cant prove it. Have any of you tried the spit test for genes for celiac? Is it reliable? It is very expensive for me as I am from New Zealand

Any tips about what I can do would be most welcome. I cant afford a nutritionist and I am still waiting to get to the specialist to get hydrogen breath tests. In new Zealand medical care is free but I have been waiting 6 months just to see the specialist so it could take another year before I get the test.

Raven posted a good response, but I also wanted to mention to you that some of the nightshades also have the same effect on me as far as RLS and myoclonus. Potatoes in small amounts don't seem to affect me, but peppers (bell, chili, etc), any amount of eggplant, lots of tomatoes or potatoes (or small amounts two days in a row) do bother me a lot. Google (or search this board) about nightshade intolerance.

As far as the labs, Enterolab and Prometheus (I think) both do a full gene panel. I know Enterolab does return marker info for DQ1 through DQ8. Please note that these do not mean you have celiac, and there is at least on person on this board with celiac disease who has a child who doesn't have any of the known markers but does exhibit all the symptoms.

ravenwoodglass Mentor
ravenwoodglass
Posted
As i said gluten causes me MAJOR fatigue and pain, and I have arthritis so going back onto gluten is just not an option.

Thanks

It sounds like you have your answer about gluten. I also saw my arthritis go into remission on the diet but even a small glutening brings it back.

The labs that Korwyn gave are the ones I would have said also. I went with Enterolab 5 years after I was diagnosed because my DD had the 2 gene panel and was told that she could not have had celiac because she didn't have the genes. That made me curious as to what gene I had. Enterolab tests for all from DQ1 thru DQ9 and I turned out to be a double DQ9. Turns out that gene I carry two copies of is a rare gene in the US caucasian population. After the test was done I did a bit of on line research and found that in the US my gene is associated with RA but in other countries it was associated with celiac and with psoriasis. That was awhile ago and my gene may be one of the 'new' ones that are now recognized as being associated with celiac in the US but I don't know for sure. I am not postive about the cost but I think just the gene panel is around $100 US. If you add on other tests the cost of course goes up. I left off gluten in my test but also tested for eggs, casien and soy and it was around $300.

Since you have gotten great relief from the diet and don't intend to ever go back on gluten you have to decide how much importance the gene tests have for you. You don't have to be on gluten for them so you might want to save up the money as you can and have it done when it wouldn't be a finacial strain.

Northland Lady Rookie
Northland Lady
Posted
  • Author
It sounds like you have your answer about gluten. I also saw my arthritis go into remission on the diet but even a small glutening brings it back.

The labs that Korwyn gave are the ones I would have said also. I went with Enterolab 5 years after I was diagnosed because my DD had the 2 gene panel and was told that she could not have had celiac because she didn't have the genes. That made me curious as to what gene I had. Enterolab tests for all from DQ1 thru DQ9 and I turned out to be a double DQ9. Turns out that gene I carry two copies of is a rare gene in the US caucasian population. After the test was done I did a bit of on line research and found that in the US my gene is associated with RA but in other countries it was associated with celiac and with psoriasis. That was awhile ago and my gene may be one of the 'new' ones that are now recognized as being associated with celiac in the US but I don't know for sure. I am not postive about the cost but I think just the gene panel is around $100 US. If you add on other tests the cost of course goes up. I left off gluten in my test but also tested for eggs, casien and soy and it was around $300.

Since you have gotten great relief from the diet and don't intend to ever go back on gluten you have to decide how much importance the gene tests have for you. You don't have to be on gluten for them so you might want to save up the money as you can and have it done when it wouldn't be a finacial strain.

Thank you very much that was very helpful. I know gluten is definitely a problem and I will never eat it again, but i need to know the degree i need to cut it out.

Because i have arthritis a symptom of celiac, should i follow a strict celiac or can i eat rolled oats and be fine. This is the reason i want the test, if i dont have the gene then i can have rolled oats. I dont want to to be limiting foods that i could be eating.

I have many diet restrictions i am lactose free and maybe frutose free, so if i follow a strict celiac diet it will help the arthritis but it means serious diet restrictions that will cost much more than the test in the long run.

So that is why i want to do the test. The money isnt so much the issue as will the test give me an accurate result. If it comes back i have the gene do i definately have celiacs? Can you get other tests as well? can they test for lactose and fructose etc?.

Thanks :-)

Jestgar Rising Star
Jestgar
Posted

There are no identified "Celiac genes". The HLA genotypes are associated with Celiac, but not causative. A gene test will tell you nothing with regard to having Celiac disease.

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ravenwoodglass Mentor
ravenwoodglass
Posted
Thank you very much that was very helpful. I know gluten is definitely a problem and I will never eat it again, but i need to know the degree i need to cut it out.

Because i have arthritis a symptom of celiac, should i follow a strict celiac or can i eat rolled oats and be fine. This is the reason i want the test, if i dont have the gene then i can have rolled oats. I dont want to to be limiting foods that i could be eating.

I have many diet restrictions i am lactose free and maybe frutose free, so if i follow a strict celiac diet it will help the arthritis but it means serious diet restrictions that will cost much more than the test in the long run.

So that is why i want to do the test. The money isnt so much the issue as will the test give me an accurate result. If it comes back i have the gene do i definately have celiacs? Can you get other tests as well? can they test for lactose and fructose etc?.

Thanks :-)

I can only speak for myself but I have to be really cautious about even the tiniest amount of CC or my arthritis will flare. If your body does not like gluten it doesn't matter whether you are gluten intolerant or a celiac you still have to be just as strict with the diet.

Some of us do tolerate oats if they are certified gluten free, I am not one of them. After you have healed well you can try adding back in gluten-free oats and see if they cause issues.

Also for many of us after we heal if we are lactose intolerant rather than casien intolerant we can add dairy back in.

Amyleigh0007 Enthusiast
Amyleigh0007
Posted

My gene test results helped my doctor diagnose me with Celiac. I had already been gluten free for a year so all other testing was out. My son has Celiac, I had many symptoms prior to going gluten free. I had a terrific response to the diet. When my gene test results came back saying I had one Celiac gene and one gluten sensitivity gene my doctor said based on my positive response to the diet, my son having Celiac, my prior symptoms, and my gene results that he could diagnose me with Celiac. Gene testing also told me both my parents carry a gluten sensitivity gene (my mom has awful stomach issues but is in denial) and my daughter carries it too. Gene testing, for me, was extremely useful.

Korwyn Explorer
Korwyn
Posted
Thank you very much that was very helpful. I know gluten is definitely a problem and I will never eat it again, but i need to know the degree i need to cut it out.

Because i have arthritis a symptom of celiac, should i follow a strict celiac or can i eat rolled oats and be fine. This is the reason i want the test, if i dont have the gene then i can have rolled oats. I dont want to to be limiting foods that i could be eating.

I have many diet restrictions i am lactose free and maybe frutose free, so if i follow a strict celiac diet it will help the arthritis but it means serious diet restrictions that will cost much more than the test in the long run.

So that is why i want to do the test. The money isnt so much the issue as will the test give me an accurate result. If it comes back i have the gene do i definately have celiacs? Can you get other tests as well? can they test for lactose and fructose etc?.

Thanks :-)

I think you might be missing something here. If you have celiac, you need to cut it (gluten) ALL out. There isn't really an acceptable amount. There is a degree of sensitivity that some people have to cross-contamination. I am super sensitive for example. I seem to react to products that are produced in the same facility or on the same production line even. But no genetic test is going to show you that. That will have to come from personal experience. Also, if you have arthritis as a symptom of celiac you should also read up on the nightshade link, since you will find a lot of people here also are sensitive to nightshades (tomatoes, potatoes, peppers, eggplant, etc). Which is known to have a significant negative effect on arthritis type issues.

One thing you should also test for is casein (the protein in dairy). I'm not lactose intolerant, but I do produce antibodies and react to casein.

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