Enterolab

[linds]

ok so i was just wondering a few things about enterolab. which test should i do. I can't afford to do both the stool antibody test and the gene panel. if I have to choose one which one do you recommend i do? On their website, they said that the stool one would be the better of the two. Is this still true even after I have been gluten free for almost 2 months?

Also, if the test comes back positive I obviously have a problem with gluten but if it comes back negative does that mean that i don't have a problem? I would like to know this for both of the tests.

I guess I am just wondering because I really don't know if gluten is my problem or not. the million (well 7) different doctors that I have been to wouldn't do the blood test or anything for celiac so i just went gluten free but after 2 months and absolutely NO change I am starting to wonder. If its not gluten I would really like to start looking for what it really could be.

Help and advice PLEASE!!

Linds

[Ursa Major]

After only two months gluten-free, the test would definitely be accurate. They told me it still would be after a year when I asked.

In your case, I would recommend just going for the antibody test, just to really know if gluten is a problem or not. If you can afford it, I'd try the casein one as well.

Have you tried going dairy and soy free? Those could pretty much give you the same symptoms as gluten, if you are intolerant to them.

Let us know what you find out, please!

[linds]

I am hoping I can talk my mom into letting me do this test. i know she will do anything to make me feel better and I need it because i just keep getting more and more stressed out and that makes me feel even worse and it is causing major strain on my social life and also in my relationship with my boyfried. I cry myself to sleep everynight just wishing that i felt better or that i really truely knew what was wrong with me.

[celiacgirls]

I agree to just do the stool test. Almost everyone has at least the gluten intolerant genes according to them, so it wouldn't tell you much if you had the genes. The antibody test will tell you if you are reacting to it.

If you do just the gluten one first, you can add the casein test later without doing another sample. They save all of the samples for at least 6 months. You don't have to commit so much money to them now and then if you decide to do more testing, you don't have to pay the S & H fee.

[CarlaB]

What kind of symptoms are you having? I'm just wondering if it could be something else. I do have a problem with gluten, and it's quite obvious that I react to it, but I'm not better after a year, so I'm still looking for answers. I think we're finally close ... but for you it may be the same thing, if you felt better off gluten, but not completely better, then maybe gluten is a problem along with something else. If you told us your symptoms, then some of us with similar ones might be able to tell you about what we did.

The other thing is, if you have other food sensitivities, then they could be causing you to not get better if gluten is a problem for you.

[linds]

What kind of symptoms are you having? I'm just wondering if it could be something else. I do have a problem with gluten, and it's quite obvious that I react to it, but I'm not better after a year, so I'm still looking for answers. I think we're finally close ... but for you it may be the same thing, if you felt better off gluten, but not completely better, then maybe gluten is a problem along with something else. If you told us your symptoms, then some of us with similar ones might be able to tell you about what we did.

The other thing is, if you have other food sensitivities, then they could be causing you to not get better if gluten is a problem for you.

I never had any stomach issues until about a year and a half ago. My family refers to me as having a stomach of steal (even when I get the flu I don't actually throw up). this is except for a short period of time in 6th grade when I had stomach aches (but nothing more) for a few months and then they just disappeared. Then about 1.5-2 years ago I noticed and upset stomach after eating greasy foods, always from a fast food restraunt, things like burgers, fries, and onion rings. I attributed that to the fact that since I had left for college in the fall of 2003 I hadn't ate any greasy foods at all. While at college i only ate salads, fruit, turkey sandwhiches, and pasta. this continued until august of 2005 when I had my first major episode as i refer to it. This was after eating a polish on the grill, once again greasey. I felt nausous and cramping and bloating. The worst part was, that i was at my boyfriends moms house which is literally in the middle of nowhere and had to walk 30 yards to the out house to go to the bathroom. They have no running water or electricity where they live. Then everything got better for a bit I tried prilosec otc and had what i thought was a miracle. I felt amazing and could even eat fast food again. Then november of 2003 it hit me like a ton of bricks and it didn't matter what i ate. I was cramping, bloated, burning in my stomach, and a gnawing pain right arround my belly button. It didn't matter whether I ate a salad or crackers or applesauce it never went away. A year later those symptoms are all still here. and I now have C which started in august of this year. I have never had D

I have been COMPLETELY gluten free for 2 months. All i eat is meat, fish, potatoes, rice, and tinkyada pasta. With a few homemade baked goods that are gluten free. And I swear to you I am getting worse!!!! I seriously want to go eat a few pieces of REAL 12 grain whole wheat bread just to see how I feel. but then i am scared that if this is a gluten problem i will really pay for it. Another reason why I wonder is because I used to eat noodles just plain with a bit of cheese on them when i felt horrible and they didn't make me feel bad. But I still went gluten-free because I am desperate to find an answer!!!

My other question was if the test from enterolab comes back negative does that mean that it is something else?

any advice... PLEASE HELP!!!!!

[CarlaB]

I would probably do a gluten challenge and see how I reacted. Since you've not had a positive dietary response, I would go buy one of the gluten items you miss the most and see how you react.

I know that celiacs can have no reaction to gluten yet still have the damage, but with no positive dietary response, I would want to know what would happen.

It sounds like you've cut out dairy, which can cause the same reaction in some as gluten.

I'm stumped. Maybe someone else will have suggestions. I know some people have taken longer than two months to see results, but it sure seems that you may have another problem.

If you really want to know from Enterolab, then get the test and see. But if you don't get better going gluten-free, I'd still be looking for something else, too.

[Ursa Major]

I agree with Carla. It looks like it may be something else. Eat that bread you crave, to see what will happen. If you react, try the Enterolab test. If you don't, you may have to try an elimination diet, to see what else could be the problem. You also should then see a doctor. You could have other problems, that need looking after.

[linds]

i forgot to mention i also have a fast heart rate all of the time. Resting it is between 120 and 140 beats per minute. I did the 24 hour heart monitor test and it peaked at 184 while i was laying on the couch watching tv.

I have been to so many doctors i feel like they can't help I have been to 2 gi's a cardiologist and a few different gp's. I live in a very small town and just to see a specialist its a 2-3 hour drive which makes things that much harder.

I do occassionly have a yogurt but that doesn't seem to bug me that much. What worries me is that i feel bad even if i don't eat anything. It's 3:10pm and I haven't ate since last night and i still feel like crap!

[CarlaB]

That's a really fast heart rate! How is your breathing? Do you have any other symptoms? Joint pain? Fatigue?

[CantEvenEatRice]

Why won't your doctors run the Celiac tests? That just amazes me when doctors just refuse to investigate further. Doctors can be so frustrating sometimes! I have Celiac and a fast heartrate and thousands of PVC's everyday. I still think there is a correlation between heartrate/blood pressure/pvcs and fatigue. I too wore the heart monitor and no one really knows anything. I do feel somewhat better on the gluten free diet (it has been 3 years), but I certainly do not feel that great. I am looking into trying the SCD diet (from the book, "Breaking the Vicious Cycle." Best of luck to you!