To Be Tested Or Not?

[Hammod]

A few years ago I started having diarrhea after every time I ate, blood in my stools, stomache pain and bloating. I went to the Doctor and he said I needed more fiber. So I went on a Diet consisting of mainly fruit, vegetables, low fat cheese and meats. I felt a ton better. But eventually went back to eating crappy processed food and now 6 months ago I started having the diarrhea again, stomache pain, bloating, nausea, severe headaches after consuming just 1-2 beers and some times I would become really sick the next day. Fatigue and some weight loss have been present, but I

[tarnalberry]

There is no right answer to this question. Only the answer you can find that's best for you and your family.

For kids, there are a few extra reasons to go through the testing process. Primarily, because they have to deal with food in school. Having a diagnosis makes it much easier to ENFORCE the gluten free diet at school. (From what I've read, I wouldn't say "makes it easy", just "easier".)

For adults... It really depends on if you trust your own body or not. If you trust that you know when you feel bad, and when you feel good... Then a dietary challenge is good enough. (Of course, you need to be COMPLETELY gluten free to do a diet trial, not "mostly", not "for a day or two". Two to three months of GLUTEN FREE.) If you're not that certain, and you feel that you need test results to keep you "honest" on the diet, the test. But eat plenty of gluten (equivalent to three slices of bread each day) for long enough (three months), or the testing will be worthless.

[JillianLindsay]

Well said and I agree 100%. Personally, I am big on getting tested because I was so sick for so long that I really needed an answer. For others they just need to feel better and don't care why or how! It's up to you

Good luck,

Jillian

There is no right answer to this question. Only the answer you can find that's best for you and your family.

For kids, there are a few extra reasons to go through the testing process. Primarily, because they have to deal with food in school. Having a diagnosis makes it much easier to ENFORCE the gluten free diet at school. (From what I've read, I wouldn't say "makes it easy", just "easier".)

For adults... It really depends on if you trust your own body or not. If you trust that you know when you feel bad, and when you feel good... Then a dietary challenge is good enough. (Of course, you need to be COMPLETELY gluten free to do a diet trial, not "mostly", not "for a day or two". Two to three months of GLUTEN FREE.) If you're not that certain, and you feel that you need test results to keep you "honest" on the diet, the test. But eat plenty of gluten (equivalent to three slices of bread each day) for long enough (three months), or the testing will be worthless.

[bluebonnet]

i'm just getting started with learning about gluten being the possible cause to my problems and am in the process of going through testing right now. so far i have only had (an incomplete) c panel done by my skeptical doctor. my doctor frankly told me he doesn't know a lot about celiac but suggests i do a "gluten free month" based on my panel. then he wants me to go back on gluten and see what happens and then possibly an endoscopy. i'm not happy with this approach. i just ordered testing from enterolab and am expecting it at my door any day now. to me having so many symptoms for so long, i need the validation. plus i want to know if i need to have my kids tested.

i think testing gives peace of mind ... or maybe not if you don't have the right doctors ordering the right tests. ultimately the decision to test or just go gluten free is a personal one. this site has been really helpful in the short time i've known about it in helping me decide and think through how to go about all this.

best wishes whichever way you decide to go!

[JillianLindsay]

I agree that your DR is ill-informed! My DR sent me straight to a GI specialist when my ttg came back positive for celiac disease. I didn't have a complete blood work-up, just the ttg. Both DRs told me to continue eating gluten until after the endoscopy/biopsy was done and then I went gluten-free immediately afterward. I don't like the idea of yo-yo-ing on and off the diet, especially when you start to feel so much better as soon as you're on it!

Good luck

Jillian

i'm just getting started with learning about gluten being the possible cause to my problems and am in the process of going through testing right now. so far i have only had (an incomplete) c panel done by my skeptical doctor. my doctor frankly told me he doesn't know a lot about celiac but suggests i do a "gluten free month" based on my panel. then he wants me to go back on gluten and see what happens and then possibly an endoscopy. i'm not happy with this approach. i just ordered testing from enterolab and am expecting it at my door any day now. to me having so many symptoms for so long, i need the validation. plus i want to know if i need to have my kids tested.

i think testing gives peace of mind ... or maybe not if you don't have the right doctors ordering the right tests. ultimately the decision to test or just go gluten free is a personal one. this site has been really helpful in the short time i've known about it in helping me decide and think through how to go about all this.

best wishes whichever way you decide to go!

[Hammod]

Thanks for the replies. I really want to get tested and I think I'll start eating the yuck again and then I'll make an appt. in a couple months. Is it possible to just make your own appt with a GI or do you have to be referred to one by your doc.? Just wondering. Thanks.

[mushroom]

Hammod, based on what I know now (self-diagnosed, gluten free for two years) I think, if you can tolerate it, you are doing the right thing. So many issues come up if you don't have a diagnosis, ones you wouldn't expect. Even down to my local Coeliac Society (New Zealand) won't let me join because I'm not diagnosed. You have the piece of paper, just like the college degree, to back you up. You may be equally able to do the job without the degree, but the piece of paper gets you the job.

As for getting in to see a GI, it depends on your insurance. An HMO will require you to have a referral; a PPO you can go where you like. Every insurance is different.

[Hammod]

Hammod, based on what I know now (self-diagnosed, gluten free for two years) I think, if you can tolerate it, you are doing the right thing. So many issues come up if you don't have a diagnosis, ones you wouldn't expect. Even down to my local Coeliac Society (New Zealand) won't let me join because I'm not diagnosed. You have the piece of paper, just like the college degree, to back you up. You may be equally able to do the job without the degree, but the piece of paper gets you the job.

As for getting in to see a GI, it depends on your insurance. An HMO will require you to have a referral; a PPO you can go where you like. Every insurance is different.

I guess I'm kind of worried that if the test results come back negative they will think I'm making the symptoms up or that I should try other things before having the tests done which is why I would rather go straigt to see a GI. I was really sick again yesterday with Diarhea like 6 times. Of course dummy me read somewhere that Hidden Valley Ranch was gluten free and I used it without looking at the label and after being sick yesterday I read the label and low and behold there is gluten it. At least there is in the buttermilk version. ugh. Its definitely going to be tough to have to constantly read the labels on things, but if that's what I gotta do then I gotta do it.

[Fiddle-Faddle]

Hammod, if you are in the US, then testing not only gives you NO advantages, it could also cost you dearly. If you are given an ironclad diagnosis of celiac, then insurance companies can use it as an excuse NOT to cover you or to raise your rates.

Since you already know that your symptoms are consistent with celiac AND that they improve on a mostly gluten-free diet, I don't think there is anything to be gained from further testing at this point. Besides, dietary response seems to be the most accurate kind of testing anyway. There are tons of people who, for whatever reason (lack of accuracy on tests, etc) test NEGATIVE for celiac--but either really do have celiac or have something that exactly mimics celiac. Besides, many people--with and without official diagnoses of celiac-- have reported having much, much more severe symptoms--and damage--after going BACK on a gluten diet for testing purposes.

Would there be anything to gain from actually damaging yourself?Wat about the potential of causing damage that takes months or years to reverse?

Remember, we don't ask anyone with an obvious peanut allergy to consume lots of peanuts just so that there is enough of a reaction, say, anaphylactic shock, to be SURE that there is a peanut allergy.

Now, if you go glutenfree (and probably caseinfree for a short time, as most celiacs seem to need to do so for at least a short time in order to heal properly), and you still have issues, then I think further testing WOULD be called for. And in that case, it would be likely that you wouldn't be looking for celiac any more but something else.

[Hammod]

Hammod, if you are in the US, then testing not only gives you NO advantages, it could also cost you dearly. If you are given an ironclad diagnosis of celiac, then insurance companies can use it as an excuse NOT to cover you or to raise your rates.

Since you already know that your symptoms are consistent with celiac AND that they improve on a mostly gluten-free diet, I don't think there is anything to be gained from further testing at this point. Besides, dietary response seems to be the most accurate kind of testing anyway. There are tons of people who, for whatever reason (lack of accuracy on tests, etc) test NEGATIVE for celiac--but either really do have celiac or have something that exactly mimics celiac. Besides, many people--with and without official diagnoses of celiac-- have reported having much, much more severe symptoms--and damage--after going BACK on a gluten diet for testing purposes.

Would there be anything to gain from actually damaging yourself?Wat about the potential of causing damage that takes months or years to reverse?

Remember, we don't ask anyone with an obvious peanut allergy to consume lots of peanuts just so that there is enough of a reaction, say, anaphylactic shock, to be SURE that there is a peanut allergy.

Now, if you go glutenfree (and probably caseinfree for a short time, as most celiacs seem to need to do so for at least a short time in order to heal properly), and you still have issues, then I think further testing WOULD be called for. And in that case, it would be likely that you wouldn't be looking for celiac any more but something else.

Another thing I'm thinking about is I keep hearing people talk about cross - contamination of utensils and toaster etc... I know my husband will not just take my word for it that I'm celiac and he sure wouldn't let me just go out and by myself a new toaster and wooden spoons etc... if I don't know for sure. Is cross contamination an issue for everyone who has celiac/gluten intolerance or does it depend on how sensitive you are? I sometimes feel sick even when I'm pretty sure I haven't consumed any gluten and just wonder if this is why. Not super sick, but kind of naseaus.

I also already have health insurance through work. Can they really drop you for being diagnosed with something?

[pearcenalaska]

Another thing I'm thinking about is I keep hearing people talk about cross - contamination of utensils and toaster etc... I know my husband will not just take my word for it that I'm celiac and he sure wouldn't let me just go out and by myself a new toaster and wooden spoons etc... if I don't know for sure. Is cross contamination an issue for everyone who has celiac/gluten intolerance or does it depend on how sensitive you are? I sometimes feel sick even when I'm pretty sure I haven't consumed any gluten and just wonder if this is why. Not super sick, but kind of naseaus.

I also already have health insurance through work. Can they really drop you for being diagnosed with something?

This is also my dilemma. I totally feel better on a gluten free diet but think I am getting contaminated or unknowingly eating hidden gluten. It gets to be so frustrating. My husband has been really great about my diet and my sons but he really would like a diagnosis. Sometimes I think he thinks I am crazy. I have been tested but am waiting for results. I have been on a gluten free/dairy free diet (aside from hidden gluten) for about 6 months so I am not expecting to test positive now. It is all so confusing! My son is 8 and he would like proof but to me the fact that his stomach doesn't hurt every night at bedtime is pretty good proof to me!

[Hammod]

This is also my dilemma. I totally feel better on a gluten free diet but think I am getting contaminated or unknowingly eating hidden gluten. It gets to be so frustrating. My husband has been really great about my diet and my sons but he really would like a diagnosis. Sometimes I think he thinks I am crazy. I have been tested but am waiting for results. I have been on a gluten free/dairy free diet (aside from hidden gluten) for about 6 months so I am not expecting to test positive now. It is all so confusing! My son is 8 and he would like proof but to me the fact that his stomach doesn't hurt every night at bedtime is pretty good proof to me!

I would also like to get tested for my 6 year old daughter who seems to take tums on a daily basis (about 3-4 times a day) because her tummy hurts after she eats. She also suffers from constipation a lot. Doctors were worried about her when she was little because it seemed she was growing on a very slow scale. She is 6, but still wears some 4/5 clothes. She's only in like the 15% for her height and weight.

[ravenwoodglass]

I would also like to get tested for my 6 year old daughter who seems to take tums on a daily basis (about 3-4 times a day) because her tummy hurts after she eats. She also suffers from constipation a lot. Doctors were worried about her when she was little because it seemed she was growing on a very slow scale. She is 6, but still wears some 4/5 clothes. She's only in like the 15% for her height and weight.

IMHO no child should need to take Tums. I wouldn't hesitate to call her ped and request a blood test and evaluation for celiac. Many of us do suffer constipation, sometimes really severe for a while before we start getting D. I have always wondered if the body isn't trying to drain every last nutritent it can in the early stages but I don't know.

After you are done with testing do give her a try on the diet. It won't hurt and may make a huge difference.