Been Gluten Free For 3 Months...no Official Diagnosis Of Celiac

[Guest keegans_mommy]

Since I have been gluten-free for 3+ months already, I am understanding that I cannot be diagnosed with celiacs (assuming I do have it)? Is there really no other way to diagnose this disease? I would like to know if I am or not. The more I read in these forums about the symptoms, the more I am convinced I probably have it. When I do eat Gluten, accidentally of course, I get severe symptoms of panic/anxiety, depresssion, excitability, nervous tension, nervous tummy, inability to think clearly, etc.

Please tell me there is another way to go about diagnosing me than me having to eat gluten for 3-6 months first! I can't do it!

[AndreaB]

If you want to have an official diagnosis you would need to do the challenge for 6 months. It still may not show the damage with a biopsy though. You may be able to get blood numbers up in that time.....I'm not sure.

If you want an unofficial diagnosis but something on paper, you could do Eneterolab's stool test. It will tell you the antibodies, ttg, malabsorption and genes if you get the full panel. They can't diagnose celiac, just whether you have a reaction to gluten. You've already figured that part out so may not want to spend the money.

The other thing you could do is the gene test that Enterolab offers. That would tell you whether you have one of the known celiac genes or not.

Diet response is a great indicator and if you can live with that you don't need to do anything further. Some have reported problems with health insurance be denied because of an official diagnosis.

[Guest keegans_mommy]

If you want to have an official diagnosis you would need to do the challenge for 6 months. It still may not show the damage with a biopsy though. You may be able to get blood numbers up in that time.....I'm not sure.

Yikes, I don't want to do that!

If you want an unofficial diagnosis but something on paper, you could do Eneterolab's stool test. It will tell you the antibodies, ttg, malabsorption and genes if you get the full panel. They can't diagnose celiac, just whether you have a reaction to gluten. You've already figured that part out so may not want to spend the money.

I had a positive IgG test for gluten and I just feel better without it.

The other thing you could do is the gene test that Enterolab offers. That would tell you whether you have one of the known celiac genes or not.

Diet response is a great indicator and if you can live with that you don't need to do anything further. Some have reported problems with health insurance be denied because of an official diagnosis.

I guess it wouldn't be a great thing to let our insurance know if I were huh? Thank you for giving me this information, I appreciate it!

[little d]

Since I have been gluten-free for 3+ months already, I am understanding that I cannot be diagnosed with celiacs (assuming I do have it)? Is there really no other way to diagnose this disease? I would like to know if I am or not. The more I read in these forums about the symptoms, the more I am convinced I probably have it. When I do eat Gluten, accidentally of course, I get severe symptoms of panic/anxiety, depresssion, excitability, nervous tension, nervous tummy, inability to think clearly, etc.

Please tell me there is another way to go about diagnosing me than me having to eat gluten for 3-6 months first! I can't do it!

I was glutne free for 3 months and then I tested not understanding that it could cause the results to vary. I then when the doc office told me of my negative results when back on gluten felt misrable for 7 months and had the pillcam thinking that it would show something again negative I guess the 3 months that I was strick yes I was strick for those of who know that I am bad with the diet. the 3 months that I was on the diet I am assuming that I had repaired enough damage if any or could have hidden damage that even the pillcam could not get to. Gives the phrase "go where no man has gone before" meaning even the pillcam, or I messed up the test some how

My next step is the Enterolab, but not until I can get the money together.

GoodLuck on your testing if you do.

donna

[Guest keegans_mommy]

Thank you Donna

Can anybody tell me of positives of knowing you are celiac if I am already gluten free? Are there benefits I most likely do not know?

Is this something that is passed down to my children? I have 4.

[Guest Doll]

Thank you Donna

Can anybody tell me of positives of knowing you are celiac if I am already gluten free? Are there benefits I most likely do not know?

Is this something that is passed down to my children? I have 4.

This is just my opinion:

Yes, there are benefits to having an official Dx:

1.) If you have something other than Celiac and/or another health condition, you will make sure you get treatment in time. Some people without Celiac go on the diet, feel better for a short period of time, then become ill again. They then begin to cut out other foods thinking this is the problem or think they are getting gluten from some hidden source, when in fact they have an entirely different disease altogether.

2.) You will be allowed to claim expensive gluten-free foods as a tax credit.

3.) You may not be able to get gluten-free food in the hospital or gluten-free medications if you don't have an official dx.

4.) You will not have to fight your case with any new doctors if you have an offcial dx in your chart. Some doctors refuse to take you seriously if you have not been dx'd. This is because many people self-diagnose and think they have Celiac Disease when it is something else. This will make it easier to have your children tested. Supposedly 1 in 20 people with a Celiac parent will also have Celiac themselves. In some families the number is much higher.

5.) You will be able to participate in Celiac Disease reserch and new treatments. Studies will not take someone without a dx.

Downsides:

1.) Celiac will be in your medical file. This may or may not be an issue.

2.) Testing can be expensive if you are not insured or don't have socialized healthcare.

3.) You might feel sick while you eat gluten for a gluten challenge.

4.) Some people find the biopsy a bad experience. I did mine awake with no sedation (yes I'm crazy) with no problems. It took 7 minutes. They did spray the back of my throat to prevent gagging though. Wasn't that bad. You can also ask to be put under. I wear an insulin pump, so I decided against this.

If you have been gluten-free for 3 months, it is possible for some of your bloodwork or a biopsy to still be positive. This is more likely if you had a lot of damage. I would try to get tested ASAP if you don't want to do a gluten challenge.

[gfpaperdoll]

I personally think that you do not need an official diagnosis. If you live in the United States you cannot deduct the cost of your gluten-free food, only the difference between a gluten-free loaf & a regular loaf & really I do not know anyone that does this, it is just a lot of trouble for not much dollars, plus you would have to itemize & have enough expenses to deduct in the first place.

Getting checked for other illnesses has nothing to do with being gluten-free unless you are going to not get those tests because you are going gluten-free first... I have not heard of anyone that has gone to many doctors for years & never getting a diagnosis of anything or got a wrong diagnosis & is on tons of meds, that has gone gluten-free & was unhappy with the results because they had another underlying illness. The nature of most humans is to go the easy route & let the doctor tell you what to do & give you some pills to cure it. Only when that does not work are people willing to do the work themselves and not eat gluten.

Getting gluten-free food in a hospital is near impossible regardless if you have a diagnosis or not. If you are carried into the hospital from an auto accident or you have passed out they are not going to know if you have an official diagnosis or not, nor do they probably really care, I mean you never have to have a paper to prove that you have a diabetes diagnosis. Plus most doctors are going to have no idea what celiac is anyway, or care as they are mending you up. My excellent leg surgeon of two years ago had never heard of celiac and he was not interested (in a very nice way) he also could not give shots!!

If a doctor refuses to take you seriously, find another doctor. Sorry but I have been thru 36 years (I am now 60) of this with food allergies & inhalant allergies. Back in the day no one believed in allergies, period. Moms would give a kid peanut butter because well everyone knew that the parents had just planted that idea in the kids head, because everyone knew that a peanut allergy was ridiculous. I almost got turned in for child abuse because the teacher thought I was cruel not to let my daughter have milk!!! Believe in yourself & get another doctor.

You do not want to be participating in any research into celiac. You are not supposed to be eating gluten - period. Forget about all the junk that the pharmaceutical companies are going to be coming out with, it will be just as ridiculous as the lactose stuff, hey, if you are lactose intolerant you are not supposed to be eating dairy, how hard is that to figure out.

Yes, you will want to get your kids tested. In my opinion the blood test is useless for children. Just test them thru Enterolab.com is my advice. Also, you might see a change in them when you start feeding them your gluten-free diet.

Other than that if you know gluten makes you sick, read some of the books that are written on the subject. You know most people are smart enough not to eat lard anymore. I think we are also smart enought to figure out the gluten and dairy stuff. I also do not eat a few other things I consider bad for me like corn syrup. Nope, I have no diagnosis of anything, but I think corn syrup is bad & I am not eating it ever again.

[Guest Doll]

I personally think that you do not need an official diagnosis. If you live in the United States you cannot deduct the cost of your gluten-free food, only the difference between a gluten-free loaf & a regular loaf & really I do not know anyone that does this, it is just a lot of trouble for not much dollars, plus you would have to itemize & have enough expenses to deduct in the first place.

Getting checked for other illnesses has nothing to do with being gluten-free unless you are going to not get those tests because you are going gluten-free first... I have not heard of anyone that has gone to many doctors for years & never getting a diagnosis of anything or got a wrong diagnosis & is on tons of meds, that has gone gluten-free & was unhappy with the results because they had another underlying illness. The nature of most humans is to go the easy route & let the doctor tell you what to do & give you some pills to cure it. Only when that does not work are people willing to do the work themselves and not eat gluten.

Getting gluten-free food in a hospital is near impossible regardless if you have a diagnosis or not. If you are carried into the hospital from an auto accident or you have passed out they are not going to know if you have an official diagnosis or not, nor do they probably really care, I mean you never have to have a paper to prove that you have a diabetes diagnosis. Plus most doctors are going to have no idea what celiac is anyway, or care as they are mending you up. My excellent leg surgeon of two years ago had never heard of celiac and he was not interested (in a very nice way) he also could not give shots!!

If a doctor refuses to take you seriously, find another doctor. Sorry but I have been thru 36 years (I am now 60) of this with food allergies & inhalant allergies. Back in the day no one believed in allergies, period. Moms would give a kid peanut butter because well everyone knew that the parents had just planted that idea in the kids head, because everyone knew that a peanut allergy was ridiculous. I almost got turned in for child abuse because the teacher thought I was cruel not to let my daughter have milk!!! Believe in yourself & get another doctor.

You do not want to be participating in any research into celiac. You are not supposed to be eating gluten - period. Forget about all the junk that the pharmaceutical companies are going to be coming out with, it will be just as ridiculous as the lactose stuff, hey, if you are lactose intolerant you are not supposed to be eating dairy, how hard is that to figure out.

Yes, you will want to get your kids tested. In my opinion the blood test is useless for children. Just test them thru Enterolab.com is my advice. Also, you might see a change in them when you start feeding them your gluten-free diet.

Other than that if you know gluten makes you sick, read some of the books that are written on the subject. You know most people are smart enough not to eat lard anymore. I think we are also smart enought to figure out the gluten and dairy stuff. I also do not eat a few other things I consider bad for me like corn syrup. Nope, I have no diagnosis of anything, but I think corn syrup is bad & I am not eating it ever again.

I agree with you on some points, but not all. I know you are 60 and have "seen it all" , but people still need to make an informed choice.

-I didn't realize the US does not allow gluten-free food to be claimed. Canada and many European countries do, so perhaps this will help a least some here. I don't itemize anything, I just keep my receipts and submit an amount. This can add up to quite a bit!

-"I have not heard of anyone that has gone to many doctors for years & never getting a diagnosis of anything or got a wrong diagnosis & is on tons of meds, that has gone gluten-free & was unhappy with the results because they had another underlying illness. "

I'm not sure how you can say this. There are people on this very board without a Celiac Diagnosis who don't seem to get better on the gluten-free diet. I agree that many people are helped, but there are some very sick people here who have turned out to have something else that needed to be treated, like Lyme Disease. Gluten was not the cause of their problems, gluten sensitivity was a symptom of something else.

-I think I was not clear enough. If a Celiac is admitted to the hospital, they need a gluten-free diet. Yes, nurses are generally clueless, but most hospitals have the ability to provide a gluten-free meal provided you have a doctor's order. I was in the hospital overnight, and while I was offered a sandwich by one nurse , the next nurse got me a gluten-free breakfast with gluten-free toast as soon as the kitchen opened. It is VITAL for me to have a gluten-free diet, my blood sugar drops dangerously low (seizure level) from gluten. Without this on file, it would be impossible to get a gluten-free meal unless I actually let that happen. Having something on paper helps. I also have Celiac Disease on my Medical Alert along with my other conditions and the fact that I wear an insulin pump. Diabetes is easy to pick up through simple common blood tests. Everyone has their blood sugar checked in the ER. Celiac is not and will not be tested. It is very true that emergencies are not a problem since nothing is usually given by mouth. I am taking about being admitted, and conscious.

-I agree that a doctor needs to take people seriously. I don't know why you're referring to allergies instead of Celiac here, but I agree with your point.

-Celiac Disease is much more serious than lactose intolerance, and not the same thing. It is not an intolerance/enzyme deficiency, or allergy. It's almost impossible to be 100% gluten-free. Something like 40% of Celiacs still have some degree of intestinal damage on the gluten-free diet. They are still at risk for some forms of cancer and for other autoimmune diseases, *even if they follow the diet*. The gluten-free diet is not a cure for Celiac any more than insulin is a cure for diabetes. I WANT a cure. I WANT something that will close my leaky gut and fix my immune response to gluten. I WANT something that will help prevent other autoimmune diseases and stop me from feeling ill from CC that I couldn't prevent. Each time I am accidently CC'd, my life is at risk. A cure needs research, and research needs people. How do you think we have all of the information we have?

-I agree blood testing in kids is not as valid. There are lots of false negatives. Some cases do show up though. But enterolab is a waste of money in my opinion. They test fecal (stool) antibodies, which also show up in HEALTHY, non-Celiac people. Useless in my opinion. There is also no such thing as a "Celiac gene" to diagnose Celiac, even though they tell you there is. If you are going to use this method and forgo formal testing anyway, I would skip it and just try the diet. I think Enterolab has brainwashed people more than the medical profession.....

-I am 100% with you on corn syrup. High fructose corn syrup is pure poison.

[Guest keegans_mommy]

Thank you everybody! This has been an interesting read and I need to do more research for myself it seems. I am normally a very informed person before doing anything so here I am searching!

I cannot go back on a gluten diet, I became so depressed, anxious and panicky that I almost commited suicide on it so it's not an option for me at all. When I am "glutened" I spend the night awake with panic attacks and the next day depressed and tired. It's unbearable.

Now, other issues have disappeared when I went gluten free too: I use to have chronic fatigue, chronic constipation and even over-all achiness.

I am not sure of what I am going to do at this point. I could see what our doc says about this but it's seems like it's most likely too late to get an accurate test result for me. We plan on the rest of the family going gluten and dairy free at some point, especially our oldest daughter who has Asperger's Syndrome and seems to act better without gluten in her diet.

[sunshinen]

Biopsy is considered the "Gold standard" for diagnosis, but it is not the only way to get a diagnosis. Dietary response can be enough if you have a good doctor. You can also do a gene test to see if you carry the gene for celiac. The combination is considered a good tool for diagnosis for people who cannot tolerate the gluten challenge.

From the reading I have done, doctors were told to push for the biopsy because it is such a hard diet that they did not think people would follow it unless they have the proof positive that they need to. Somehow, in our culture of judging sick people, that has been turned on its head. For most of us, the dietary response is all the proof we need. We don't need a lab result to convince us the diet is necessary, but sadly, everybody else wants a biopsy to prove to them that it's necessary, that we're not sadistic, or hypochondriac, or whatever.

[Guest keegans_mommy]

Biopsy is considered the "Gold standard" for diagnosis, but it is not the only way to get a diagnosis. Dietary response can be enough if you have a good doctor. You can also do a gene test to see if you carry the gene for celiac. The combination is considered a good tool for diagnosis for people who cannot tolerate the gluten challenge.

From the reading I have done, doctors were told to push for the biopsy because it is such a hard diet that they did not think people would follow it unless they have the proof positive that they need to. Somehow, in our culture of judging sick people, that has been turned on its head. For most of us, the dietary response is all the proof we need. We don't need a lab result to convince us the diet is necessary, but sadly, everybody else wants a biopsy to prove to them that it's necessary, that we're not sadistic, or hypochondriac, or whatever.

If this were the case for me, do my symptoms seem like Celiac symptoms? I am working to rid our home of gluten for all 6 of us but I wonder if I should do that before disngosis for each of us. Honestly, we cannot afford all the testing for this.

[Nancym]

Personally I don't find it that big of a deal. Gluten didn't add anything to my life I couldn't find elsewhere. I just made the adjustment and went on. Yes, some things in life got less convenient and spontaneous but having the health improvements made it worthwhile.