Self Perscribed Gluten Free & Wondering

[hannibehr]

Hi all,

I have been reading a lot about celiacs and gluten sensitivity after being referred by my ND. (And also have rheumatoid arthritis and chrons disease in my family history).

About six months ago I had severe nasea, bloating, fatigue, depression and general malaise. My doctor kept poo pooing me, saying I had good cholesteral and a healthy weight, so I was fine. It was only after going to an ND who detected a low thyroid and poor absorption in my intestines that I started trying to go gluten free.

I am not 100%, and in fact had pizza last night (and consequently, achy joints this morning). I eat gluten probably at least once a week, but am trying to eliminate it all together.

People look at me like i'm crazy when I refuse bread and things at restaurants, because I have not been diagnosed with a particular ailment.

Knowing what I know now, I wish I had been tested for gluten sensitivity 6 months ago before starting my diet. However, I am still interested in knowing if I have it, and am wondering if there are tests which can detect this with my special situation. I mean, since I haven't been strictly gluten free, would i still show positive for antibodies, etc?

Thanks so much!

[Rikki Tikki]

A lot of people talk about entrolab, I don't know if the spelling is right. From what I have gathered they test for a specific gene. Maybe someone else has the answer. I always say if you feel better gluten-free then stay gluten-free. I wish I had understood it before the celiac took such a toll on me.

[KaitiUSA]

Enterolabs are good but they are not widely accepted by the medical community yet. They are on to something though in my opinion. They not only test for the gene but they test for gluten sensitivity, malabsorption and so forth. If you go to their website you can find more info. www.enterolab.com

Also gluten is hidden in many things so if you are planning to eliminate all of gluten it's not just bread and the obvious things.

https://www.celiac.com/st_main.html?p_catid=12

Take a look at this safe and forbidden list for celiacs and other things we have to keep an eye out for.

[hannibehr]

Thanks for your replies ladies. I read Dangerous Grains a few months ago, and have been using the appendix's safe and unsafe grain list as a guideline for avoiding. I also found the lists on this site, and will print them out for references.

On a whim, I contacted the co-author of Dangerous Grains about my situation. He told me that because I have reduced gluten, but not avoided it altogether, a sensitivity will surely be detected through IgA testing and such.

The thing is, I'm not sure I should get tested. Even if the testing showed I wasn't gluten sensitive, I will still continue trying to be gluten-free, because I know my health has improved as a result of this diet.

The upside of testing, is that if it is confirmed, that I do have a sensitivity, it would really make me go all the way and avoid gluten altogether.

As Celiacs dealing with the dangers of grain on a daily basis, what would your advice be to me?

[ianm]

I am self diagnosed and have never been tested. I tried eliminating gluten from my diet and it produced such a dramatic change in my life that there really is no doubt what the problem is. An official diagnosis really won't change anything for me anyway. There is no cure other than the gluten-free diet. I am now healthier than most of the people I know. To get tested I would have to load up on gluten and I cannot afford to be out of action that long. I am getting my personal life and career back on track and need all the energy and focus I can get.

[Rikki Tikki]

I think there are benefits to both. If you feel better being gluten free then do it. The only upside of having a diagnosis is that for many of us we spent years thinking it was all in our heads.

The only downside I can think of is depending on your age, how your eligibility for insurance would be effected.

[KaitiUSA]

Sally, I completely agree.

I am a diagnosed celiac and I was happy for the diagnosis because I had been through alot and wanted an answer to what it was...in some ways it kind of sets me up for possible insurance problems so when I turn 22 I have to make sure my job has some really good insurance that will accept me or can't turn me down.

[ianm]

The insurance thing is another reason I don't want to get tested. Ignorance is bliss and the more ignorant the insurance companies are about any health condition I have the more blissful I am. This way they can't call me uninsurable or say I have a pre-existing condition because there is nothing in writing.

[Rikki Tikki]

Thanks Kaiti

That made me laugh Ianm

[hannibehr]

Katie, Ian, and Sally, thank you for your recommendations.

I hadn't even thought about health insurance repercussions. And I think, like Ian, I've discovered such a radical change in my health since reducing grain, not even being 100% gluten free, that I don't need a doctor to diagnose that grain is bad for me. (Plus I don't really want to suffuse myself with them again and get sick like I was before I started avoiding).

I think I won't get tested, because of the insurance thing. However, I am going to make a reaffirmation to go full-on gluten free. And I think if people keep asking me why i'm so weird, why I don't eat grain, I'll just say i'm gluten sensitive. I don't need a docs handwritten diagnosis to confirm something I feel so strongly about.

Right now I eat very little grains at all (not even grains that are safe for celiacs), because if something has grain in it, it's likely been baked with sugar and my husband and I are trying to break our sugar addictions. However, in a few months I would like to start cooking gluten free bread and eating quinoah, and things like that.

I guess I will lurk in the celiac.com recipe forums for more info.

Thanks so much. You all have helped me immensely!

[christicrete]

Just Wondering if the enterolab testing is considered "in writing" as you guys put it as far as testing is conserned. I am considering the enterolab testing because I absolutely hate my GI and my MD is ignorant. Was considering the trying to get my doc to order the tests for me so insurance would pick them up but now reconsidering after hearing you guys talk about Insurance problems. We are now currently self employed and may have to change insurance companies down the road if we start providing insurance for our employees. My reason for getting tested is if I prove to be celiac or what ever, I am more likely to stick to gluten-free and also the reassurance that it's not all in my head. Also if gene test prove to be positive, I will get my children tested also. I agree with you Ian that ignorance may be bliss

As always, thanks and any reply is very appreciated!

Christi

[Guest ajlauer]

Has anyone had insurance problems because of being diagnosed??

Here's what I know, in general, about pre-existing conditions - and it doesn't seem it would apply to celiac.

If you signup with a new company and have been without insurance, there is a waiting period (usually 90 days) in which you must pay for treatments pertaining to that pre-existing condition. "treatments" would typically include medications, surgeries, that sort of thing.

They can't refuse to pay your regular doctor visit, as that would likely include a discussion on issues other than celiac disease - weight check, blood pressure, looking at your ears/nose/throat etc.... There are no medications associated with celiac disease, therefore there are none that could be denied. And if you found out you needed some sort of surgery - that would likely be for a "secondary" condition. It may be *related* to celiac disease - but would be a different diagnosis altogether, and therefore not a "preexisting condition".

Now if you're looking at getting insurance on your own - not part of an employer-package, your rates would likely be higher by having a documented (and verifyable) condition. As far as I know, there is no "national registry" for medical ailments - at least not of the "food intolerance" type. I think, even with a diagnosis, it would be hard for the new insurance company to find out about it.

Has anyone had a personal experience with this?