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Help! Explain All These Test!

Jackyhy

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Jackyhy Newbie
Jackyhy
Posted

Hi all,

Need some help on what test I need. I have been a sickly person my whole life but since I had my son(and all the pregnancy) I have been in horrible shape. Migraines, fatigue and the list goes on and on. I found a lot of info on celiacs and decided I couldnt take it anymore, I needed to try it. I have been gluten-free for almost a week and feel at least 80% better. I really want to have all the test run, mostly for my family, son and nieces (I'm pretty sure they have celiac). I started back on gluten last night, for tesing purposes only, it made me want to cry, I have no desire to eat any gluten at all. I am calling my doc today or tomorrow to have him order all the lab work. I am very confused as to what all I need, and I don't think he is an expert on the matter. A lot of people talk about enterolab and the cost of it. Does insurance not cover any of it, and if not what is the cost. I want to have it all done NOW because I never plan on eating gluten again. I am a little weary of having an EGD for diagnosis. Thanks in advance!!

Jackie

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jerseyangel Proficient
jerseyangel
Posted

Hi Jackie and welcome :)

You have come to the right place. The blood test for Celiac is a panel which consists of:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

You need to be eating a full-on gluten containing diet leading up to the time of testing. Make sure your doctor orders the full panel.

Testing through Enterolab (stool testing) does not require you to be eating gluten-free. Enterolab can not diagnose Celiac, but can tell you if you are gluten intolerant. They also offer testing for other food intolerances, such as soy and dairy.

Enterolab offers a Celiac gene test (cheek swab).

As for insurance, I've seen people here who's insurance did cover the cost--I don't think most do, though. Defintely do check if you plan to go that route.

The endoscopy/biopsy is nothing to fear. In most cases, you are sedated and don't remember a thing. You have nothing to eat for 12 hours before, and the test itself takes about 20 minutes. Other than a slight sore throat afterwords (which I did not have), the recovery is normally pretty quick.

It sounds like you had a good response to the gluten-free diet. That, in and of itself, is a valid diagnostic tool and some choose to go ahead and live gluten-free based on that.

Whatever you choose to do, don't hesitate to come here and ask questions and let us know how we can help :)

Jackyhy Newbie
Jackyhy
Posted
  • Author

I started eating gluten free last Thurs, I was feeling a world of difference by Friday. I have felt better the past week than I have in years. I am going to have the blood test in a few days so I very reluctantly started back on gluten last night. I feel horrible. Since I went gluten-free last week I have not had a desire at all for gluten! I feel so much better this will definitely be my new lifestyle, however I want to know if I am positive for my familys sake. I feel like I am poisioning myself for the good of the team, and it sucks! Any way enough of my rant. Do you think it will change my test results after being gluten-free for only a week? I'm thinking of going in tonight and having them drawn just so I can go back gluten-free, or do you think I should be full gluten for a few more days?

Thanks for all your advice!! This is such a great resource!!

Jackie

jerseyangel Proficient
jerseyangel
Posted

Jackie,

My best advice would be to eat as much gluten as you can for as long as you possibly can before the testing--maybe even holding it off for a bit longer. I know that's not what you wanted to hear--and I don't blame you--but eating gluten-free or even going gluten "lite" before can skew the results.

In other words, you have to be regularly eating gluten for the antibodies to show up in the blood. Exactly how long is the tricky part--the rule of thumb is 3-4 slices of bread day for 3-4 months. Since you were only off gluten for a week, it wouldn't seem you would have to go that long.

Jackyhy Newbie
Jackyhy
Posted
  • Author

What about an EGD? Could I remain gluten free if I had one soon. I'm pretty sure I can't keep this up at all. I will have to be a diagnosed by diet person because I feel absolutely horrible.

jerseyangel Proficient
jerseyangel
Posted
What about an EGD? Could I remain gluten free if I had one soon. I'm pretty sure I can't keep this up at all. I will have to be a diagnosed by diet person because I feel absolutely horrible.

Jackie,

An EGD is the same as the endo/biopsy. You do need to be on gluten, also for it to be accurate. The intestine begins to heal (even thought the symptoms don't always reflect it) as soon as you stop eating gluten. It's hit or miss anyway because the damage can be patchy and easily missed--especilly if the doctor doesn't take enough samples (8-10 is ideal).

I hate to see you keep poisoning yourself with gluten--have you thought any more about Enterolab? You could do the gluten sensitivity package and the gene test. Or, just stay off gluten--you really don't need anyone's permission to eat gluten-free. If it makes you sick, simply avoid it :)

I understand wanting to have a "diagnosis"--you need to do what you feel is best for your situation.

confusedks Enthusiast
confusedks
Posted

Jackie,

If you can, keep eating gluten...if you care about a "real" diagnosis. It will save you lots of trouble down the road if you get a diagnosis now. For me what happened was I got really sick my Primary Care Physician recommended the gluten-free diet and I started, the by the time I finally got to the GI dr. she now wants me to go back on gluten and there is now way you could ever pay me enough money to do that!! LOL!

I wish I had gotten a biopsy so I knew for sure whether I have Celiac or just a gluten sensitivity. If I could do it all over again, I would have stayed on gluten for a couple more weeks and gone for a firm diagnosis.

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Jackyhy Newbie
Jackyhy
Posted
  • Author

I really dont care about a diagnosis for myself, but I have a 15 month old son and I know if I have it that he has a much greater chance of having it. I certainly dont want to subject him to a gluten free diet if he doesnt need it. He has had numerous little problems since birth, milk protein allergy(bloody stools and all), he still seems to be very lactose intolerant so we have him on soy. He has very sensitive skin, very red and rashy all the time. I just dont want him to suffer at all if he does have it as it seems as if everyone suffers needlessly until they eventually figure out it is celiac disease. If I continue gluten-free(I honestly don't think I can do another HOUR of feeling this way) is genetic testing somewhat accurate? I actually put money in flex spending this year because I have been so sick this past 2 years and I planned on getting to the bottom of it this year. Funny(not really) I fixed myself a few days before the new year. So anyway, if genetic testing is a good indicator I will probably do it because I have a lot of money to spend this year on medical that I probably wont need. Thank you so much for all your help and quick answers!!

Jackie

jerseyangel Proficient
jerseyangel
Posted

Jackie,

You do not have to be eating gluten for the gene test to be accurate--your genes are your genes, no matter what you eat or don't eat. I think it's a good test for you--you can have your baby's done, if you want, too. It's just a simple cheek swab that you do at home.

I had the gene testing done through Enterolab--I was already dignosed, but I was curious about which genes I had.

Jackyhy Newbie
Jackyhy
Posted
  • Author

Well my doctors nurse just called back and they are going to call the lab work into the hospital where I work. I guess I'll have them drawn with the thought that they will most likely be negative. I cannot eat gluten anymore!! I'll probably go on to genetic testing after that.

Thanks, Jackie

jerseyangel Proficient
jerseyangel
Posted

Good luck, Jackie. Let me know how it comes out :)

aikiducky Apprentice
aikiducky
Posted

The genetic testing won't tell you all that much... about 30% of the population has celiac genes, but only a fraction of those people actually develop the disease. On top of that, some people have celiac without having the known genes. So a positive for the genes doesn't guarantee that you have it, and a negative doesn't guarantee you can't have it.

Pauliina

jerseyangel Proficient
jerseyangel
Posted

True that you can't diagnose Celiac based on genes, but since Jackie was questioning whether to stay on gluten to be properly tested, I was throwing out different ideas that she could consider.

There are doctors who will diagnose Celiac based on symptoms, positive dietary response, and DQ2 or DQ8 genes.

While there are certainly exceptions, the vast mjority of Celiacs will carry one or both of the two.

I think the more information, the better :)

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