Celiac Gene, Want A Diagnosis

[cornbread]

I have a severe intolerance to gluten and casein, plus I have a Celiac gene (and a gluten senstive gene for back up ) I have not been diagnosed with celiac disease because I went gluten-free before I knew what Celiac was. Gluten makes my life unbearable, and the thought of eating is for 6+ months to get a positive diagnosis (by purposefully causing damage to myself) seems insane to me, especially when the prescribed cure would be exactly what I am already doing, avoiding gluten.

It would however add some weight to my case (ordering food, explaining to friends, etc.) if I could say I had been diagnosed with a disease rather than simply saying "eating this makes me feel bad and could lead to a disease". As it stands I am uncomfortable saying I have a disease I have not been doctor diagnosed with, even though all signs point to Celiac. I had symptoms for 12 years that vanished upon going gluten-free and return upon a trace amount of gluten consumption. This could be 'just' gluten intolerance, except that I have the Celiac gene so I'm kept wondering...

If someone is diagnosed with celiac disease and then undertakes a gluten-free diet, healing the damage, are they still classed as having celiac disease? Or do they become officially merely gluten intolerant? If they are forever classed as Celiac (which I believe they are), but they are effectively in the same position as me (Celiac gene, gluten intolerant, maintaining health through a gluten-free diet), what really is the difference? We are both succeptable to Celiac-related damage if we consume gluten.

Does anyone say they have celiac disease in order to have the details of their diet taken more seriously, eg. when dining out, etc? Until the implications of gluten intolerance (Celiac or not) are more widely understood, the added clout of 'I have a disease...' would be very useful.

Has anyone here been diagnosed just by a dietary challenge? Is there a doctor who will diagnose this way, at least in conjunction with gene testing?

I have also heard about a rectal challenge which can diagnose Celiac after a gluten-free diet has started. Does anyone know where these are performed? (Yes, yes, in the rectum I know... )

[Nevadan]

I hear you. I'm gluten sensitive but don't have the celiac disease genes (I have a double dose of GS genes (DQ1's)). I self-dx'ed at first and saw several symptoms (some of which I didn't even recognize as symptoms) vanish within days of going gluten-free. I did do the Enterolab testing mainly to get the DNA analysis; however their stool testing also confirmed that gluten (and casein) are problems for me.

I sincerely believe that official medical dx's are WAY overrated, unless you need one for insurance or tax purposes. If you feel better without gluten, that's enough. It's your body,and it does it's best to tell you what it doesn't like - what you do about it is your choice. We all make choices daily and choosing what you eat is no ones business but yours - even though it may be a bit of a hassle sometimes.

I recommend reading "Dangerous Grains" by Braly and Hoggan - it covers the downside of grains for both those with celiac disease as well as those with non-celiac disease GS.

Hope this somehow helps.

George

[nettiebeads]

I have a severe intolerance to gluten and casein, plus I have a Celiac gene (and a gluten senstive gene for back up )  I have not been diagnosed with celiac disease because I went gluten-free before I knew what Celiac was.  Gluten makes my life unbearable, and the thought of eating is for 6+ months to get a positive diagnosis (by purposefully causing damage to myself) seems insane to me, especially when the prescribed cure would be exactly what I am already doing, avoiding gluten. 

It would however add some weight to my case (ordering food, explaining to friends, etc.) if I could say I had been diagnosed with a disease rather than simply saying "eating this makes me feel bad and could lead to a disease".  As it stands I am uncomfortable saying I have a disease I have not been doctor diagnosed with, even though all signs point to Celiac.  I had symptoms for 12 years that vanished upon going gluten-free and return upon a trace amount of gluten consumption.  This could be 'just' gluten intolerance, except that I have the Celiac gene so I'm kept wondering... 

If someone is diagnosed with celiac disease and then undertakes a gluten-free diet, healing the damage, are they still classed as having celiac disease?  Or do they become officially merely gluten intolerant?  If they are forever classed as Celiac (which I believe they are), but they are effectively in the same position as me (Celiac gene, gluten intolerant, maintaining health through a gluten-free diet), what really is the difference?  We are both succeptable to Celiac-related damage if we consume gluten. 

Does anyone say they have celiac disease in order to have the details of their diet taken more seriously, eg. when dining out, etc?  Until the implications of gluten intolerance (Celiac or not) are more widely understood, the added clout of 'I have a disease...' would be very useful.

Has anyone here been diagnosed just by a dietary challenge?  Is there a doctor who will diagnose this way, at least in conjunction with gene testing?

I have also heard about a rectal challenge which can diagnose Celiac after a gluten-free diet has started.  Does anyone know where these are performed? (Yes, yes, in the rectum I know... )

<{POST_SNAPBACK}>

My good ole gp (since retired) had me do the diet challenge, I felt great, ergo he dx celiac. I don't think I had gluten intolerence, it is celiac. And once a celiac, always a celiac as it is an autoimmune disorder. Think diabetes - can be controlled, but you always have it. What difference does it make to other whether you have been officially dx through tests? The diet challenge confirms problems with gluten. Whether it's gluten problems or full blown celiac, your body does better w/o gluten, then just say you have an autoimmune problem (that would cover intolerence and celiac), you won't be lieing, and take care of your body. You can't help what other people think, so don't worry about that.

[Claire]

I sincerely believe that official medical dx's are WAY overrated, unless you need one for insurance or tax purposes.  If you feel better without gluten, that's enough.

George

<{POST_SNAPBACK}>

I am no doubt repeating myself here but I do feel strongly about getting documented confirmation of celiac disease or non-celiac gluten sensitivity. The reason - you need to convince family members to be tested. Celiac is a genetic disease that, with or without symptoms, threatens the present or future health of anyone with the disease. Some family members will resist the information even with your documentation. Without it they will ignore you altogether. Claire

[tstarbrat]

I am no doubt repeating myself here but I do feel strongly about getting documented confirmation of celiac disease or non-celiac gluten sensitivity. The reason - you need to convince family members to be tested. Celiac is a genetic disease that, with or without symptoms, threatens the present or future health of anyone with the disease. Some family members will resist the information even with your documentation. Without it they will ignore you altogether. Claire

<{POST_SNAPBACK}>

I understand what you are saying but can u even be tested if you haven't eaten an wheat/gluten. I am actually looking to get confirmed as a Celiac myself simply for tax reasons.

[skbird]

My doctor said avoiding gluten was the way to go. I asked what about testing and he said stick with the diet for 6 months, try gluten, if it makes me sick, I have my answer. I went to a gastro the other day for the first time and he had no problems accepting I have gluten intolerance - without any testing.

Celiac is not the only result of gluten intolerance. Gluten intolerance is the bigger name, really, it encompasses all forms of disease related to gluten. DH is part of gluten intolerance, some people with Celiac have DH, some don't, some with DH don't have Celiac. I don't have a Celiac gene but I definitely have a dietary response.

I proudly wear my "gluten intolerance" flag. If you are in a restaurant ordering food, there's nothing wrong with saying you have gluten intolerance - it's the truth. If I feel someone is not understanding me, then I will add that I have a lot of food allergies and that I cannot eat wheat, rye, oats or barley. I'm not technically telling them I have an allergy to those foods, just that I can't eat them.

You need to be able to stand up for yourself. If you can't eat something, then you have to tell them that. Having the official diagnosis of Celiac may seem helpful, but how many people in restaurants know what that really means, anyway?

I do not believe a gluten challenge is good for anyone. If they determine you have Celiac and put it on your insurance file, it might cause more harm than good, IE having a hard time getting insurance in the future, etc. Plus, you may NOT have actual Celiac, so you'd be going through all that to only know what you already do.

I haven't been able to eat peppers, tomatoes, potatoes, or eggplant for several years, yet I have no official diagnosis for this. In fact, most doctors don't know what that means, or even acknowledge that someone could have trouble with those foods. So I have had to be my own advocate on this - I'm sure that's in part how I don't mind standing up for myself with gluten, either.

It doesn't matter what any doctor or waiter thinks on this subject - YOU have to live with the results, so you need to determine what makes you feel better. I know it's weird having these limitations and having to defend them, but you need to be true to yourself, not worry about what the waiter is going to think of you for having food limitations.

I hope this helps -

Stephanie