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# 2 Gastro Visit

2old4

By 2old4
in Doctors

Recommended Posts

2old4 Rookie
2old4
Posted

Hi guys & gals-

I was just diagnosed 2 months ago. Basically, I was called by my Gastro doc and was told I had Celiac and to go on a gluten-free diet and he'd like to see me in 8 weeks. Luckily, I had read about Celiac and was pretty sure at this point that I had it so I was somewhat prepared for what I had to do. (At least with food, if not the other..meds, makeup, soap, etc.)

Well my 8 weeks is up next wednesday. I have done very well with the diet and it has confirmed his diagnosis to me. What I don't know, is what the levels are that you talk about. Should I ask him for a copy of my blood tests so I know? And do you go back for another to see where you are, and when? And how do you get tested for the gene, do you need to? This process is sketchy to me. Is it necessary?

I have a 3 year old son. Should I get him tested now, or wait to see if he develops any symptoms? I hate to put him through any testing if it isn't absolutely necessary. I'd appreciate your input.

Thank you- Patty

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Jnkmnky Collaborator
Jnkmnky
Posted

Oh, the testings not that bad. I think three years of age is worth testing for C.D. If it's negative, test him in a year or two even if there appears to be no symptoms just to rule out the false negative possibility. The tests are yours. I always get my test results printed out and take 'em home. That way I have something to refer to, something to bring to a new dr should I change drs, something to show the school nurse *kid's tests if they need to see them. It's handy to have important test results at your disposal.

KaitiUSA Enthusiast
KaitiUSA
Posted

All of your relatives should be tested too because this is genetic. If you want the results then ask for them.Are you wondering about the blood tests that we talk about? Blood tests do not matter if you got a positive biopsy...a biopsy will rule it in for sure it is when it is negative where you can't rule it out. I'm sure you will find this site very helpful :D Welcome

celiac3270 Collaborator
celiac3270
Posted

Try to investigate into medication, makeup, etc. If you don't eliminate all the gluten, you're not doing your body much service.

Follow up appointment: the doctor will basically ask you how you feel on the diet, if you've been following it, etc. You'll say you feel great, cut out all gluten in foods, still working out the kinks and checking things like medication, toothpaste, makeup.

Unless you have an incompetent doctor or you strongly question your diagnosis, you don't need a copy of the results from your blood test. You can always get one if you want, but your doctor should be interpreting that for you--that's what he/she is there to do, anyway. I don't think you need to do anymore testing. No biopsy if you're on a gluten-free diet, blood has been done, gene tests won't give you a positive diagnosis, just rule out celiac disease in some cases--just cause you have the DQ2 gene doesn't mean you have Celiac. Sure, over 90% of Celiacs have the gene, but over half the population has it, as well. Since you've been diagnosed, you don't need a gene test.

Your relatives should definitely be tested--there's a much higher incidence in 1st and 2nd degree relatives than in the average, healthy population--over 10 times, in fact.

Your son should definitely be tested at some point--three would probably be an okay age. This is what I would recommend: first, have the gene test done. If he does not have the DQ2 or DQ8 gene, he will never develop Celiac and no testing is needed now, or ever. If he has either or both of the genes, he could develop celiac at any time. In that case, test now, and then test every few years to make sure the gene isn't triggered. It's a practice you can't neglect, because he could develop Celiac, and simply have no symptoms.

-celiac3270

Merika Contributor
Merika
Posted

I wouldn't bother with gene tests if you have a positive diagnosis, for you or your son. Those are mainly for people who test negative, but think they might have it, or want to know if they *might* get a positive result in the future.

Do the celiac blood test on your son. First degree relatives have a 1 in 10 chance of having celiac, high enough to merit testing for ALL your immediate relatives. It is simple, quick, and relatively painless. The blood test panel is now considered as good as or better than a biopsy, so there's really nothing to worry about by having your son tested :)

Merika

2old4 Rookie
2old4
Posted
  • Author

Thank you all, I will ask about getting gene/bloodtests for my son while I am there and get a copy of the bloodwork that was done on me. That was positive.

I didn't actually have a positive biopsy. The gastro told me after the endoscopy that the damage was visible through the scope but the pieces he took weren't positive when the tests came back. He said this happens sometimes, the affected tissue might not have been where he cut or he may not have gone far enough in.

I believe that my mother & brother may have symptoms but they won't be tested, I've tried to talk to them and explain the risks but I haven't had any luck, not sure what else to do. I'll keep trying.

Thanks for your responses-

Patty

2old4 Rookie
2old4
Posted
  • Author

Hi, I just came back from seeing my gastro doctor. Really strange to me, what he said. I asked him about getting bloodwork done on Connor (my 3 yr old) and he asked me if he had any symptoms. After telling him no, he said that he wouldn't test him at this time, he would if I noticed any digestive difficulties or if he had any delayed growth. I asked him, "what if he has it but doesn't have any symptoms and is getting damage without our knowledge?" He said that was unlikely.

I also told him that my mother and brother were symptomatic and I haven't been able to convince them to be tested. Did he have any suggestions for me to try? He said no, if they didn't want to, they weren't sick enough yet!? :unsure:

As for me, he just asked how I was tolerating the diet, etc, (just like you said celiac3270) and wants to see me in December after some more bloodwork for absorbtion. I asked him if I would benefit from taking digestive enzymes, he said he didn't think that was necessary.

Some of my original test results: by Quest Diagnostics

Tissue Transglutaminase 57 Normal ranges (0-19)

IgG 64

IgA 26

I don't know guys, he seems a bit cavalier about all of this to me, what do you think?

Thanks-Patty

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