Challenging Gluten

[jswog]

I know you all will understand. Due to IDIOT doctors, I have no definative diagnosis. I've been doing a through elimination diet and have been gluten free since Sept. 14th. I'm almost finished challenging all of the many things I've removed, with the only thing so far that's given me issues being eggs. However, I know I will have to challenge gluten very soon. Fortunately, my OBGYN NP has referred me to an RD as of this past Friday, so I'm planning to hold off on the gluten challenge until I'm working with her. But... For right now, I'm sitting up at 3am, not able to sleep, worrying about knowing that I will HAVE to make myself sick very soon.

Jen

[GlutenDude]

I'm not sure I understand. Instead of guessing, why don't you just get tested for celiac?

[jswog]

  On 10/24/2011 at 10:09 AM, GlutenDude said:

I'm not sure I understand. Instead of guessing, why don't you just get tested for celiac?

I had an EGD during which the GI was SUPPOSED to take biopsies to test for Celiac, but because (and I AM quoting here) he "didn't SEE any damage," he decided he didn't need to take any. I did't find that out until TWO weeks later when I had my follow-up appointment with his nurse practitioner after I had been gluten free for a full two weeks (went gluten free IMMEDIATELY following the EGD). So now I cannot get testing done without going back to eating gluten for 3-4 months!

[ravenwoodglass]

If your symptoms have improved gluten free then no one can force you to challenge for the 3 to 4 months needed for a biopsy. Did you have positive blood work? If you did then personally I would only challenge until I reacted and skip the biopsy.

[jswog]

  On 10/24/2011 at 12:29 PM, ravenwoodglass said:

If your symptoms have improved gluten free then no one can force you to challenge for the 3 to 4 months needed for a biopsy. Did you have positive blood work? If you did then personally I would only challenge until I reacted and skip the biopsy.

I guess maybe I didn't say things clearly. My symptoms have improved GREATLY since going gluten free and I have ABSOLUTELY NO INTENTION of going back on gluten for 3-4 months to try to do another biopsy or bloodwork. Bloodwork was not done as I was already gluten free when I found out that the biopsies had NOT been taken like they were supposed to have been. An elimination diet requires you to re-introduce (ie: CHALLENGE) each possible trigger and then chart what, if any, symptoms come back with each one. Since the medical profession failed me in such a profound way that I could not get the 'official' diagnosis, I am now left with no option but challenge gluten and document the symptoms it gives me.

[Skylark]

Or you could just skip the challenge, figuring the inevitable mistake on the diet will serve as a challenge.

[jswog]

  On 10/24/2011 at 10:58 PM, Skylark said:

Or you could just skip the challenge, figuring the inevitable mistake on the diet will serve as a challenge.

While I have thought of that, I want to make sure it is so totally black and white for the idiot doctors. I want to have all other variables out of my diet so that the ONLY thing it even possibly could be that made me sick was GLUTEN. No ifs, ands, or buts. There cannot be any gray areas whatsoever, no 'well, are you sure it wasn't something else you could have eaten?'. I *know* I got glutened at Texas Roadhouse the other night, but because these were 'gluten-free' options I ordered, the medical non-professionals could be left to question if it was gluten cc or was it something else I could have gotten. I HAVE to do this in a very intentional, scientific way in order to make it absolutely clear to these idiots! But I'm dreading it...

[peeptoad]

  On 10/24/2011 at 11:51 PM, jswog said:

While I have thought of that, I want to make sure it is so totally black and white for the idiot doctors. I want to have all other variables out of my diet so that the ONLY thing it even possibly could be that made me sick was GLUTEN. No ifs, ands, or buts. There cannot be any gray areas whatsoever, no 'well, are you sure it wasn't something else you could have eaten?'. I *know* I got glutened at Texas Roadhouse the other night, but because these were 'gluten-free' options I ordered, the medical non-professionals could be left to question if it was gluten cc or was it something else I could have gotten. I HAVE to do this in a very intentional, scientific way in order to make it absolutely clear to these idiots! But I'm dreading it...

I don't have an official diagnosis either, and probably won't ever, since my bloodwork was negative. I did a gluten-free trial and challenge and gluten is very clearly the cause of my GI problems. I told my doctor this, just to FYI him and he told me I may have a gluten sensitivity, but not necessarily celiac disease. That's good enough for me I guess... although it would be nice to know if gluten is actually damaging my body and predisposing me to cancer (if I happen to ingest it), but my doctor doesn't seem to want to do the EGD to biopsy.

[Skylark]

Waitaminute. Why are you making yourself sick for the idiot doctors? I thought you'd given up on them. Tell them you don't eat gluten because it makes you sick. End of story.

[sreese68]

  On 10/24/2011 at 11:51 PM, jswog said:

While I have thought of that, I want to make sure it is so totally black and white for the idiot doctors. I want to have all other variables out of my diet so that the ONLY thing it even possibly could be that made me sick was GLUTEN. No ifs, ands, or buts. There cannot be any gray areas whatsoever, no 'well, are you sure it wasn't something else you could have eaten?'. I *know* I got glutened at Texas Roadhouse the other night, but because these were 'gluten-free' options I ordered, the medical non-professionals could be left to question if it was gluten cc or was it something else I could have gotten. I HAVE to do this in a very intentional, scientific way in order to make it absolutely clear to these idiots! But I'm dreading it...

I did exactly this not only for the doctor, but also for myself. I needed to KNOW it was gluten causing my problems and not something else. Be sure to write all your symptoms down and save it in your computer. I was very surprised what mine were as I was expecting stomach issues and I ended up with neuro issues.

[jswog]

  On 10/25/2011 at 5:15 PM, sreese68 said:

I did exactly this not only for the doctor, but also for myself. I needed to KNOW it was gluten causing my problems and not something else. Be sure to write all your symptoms down and save it in your computer. I was very surprised what mine were as I was expecting stomach issues and I ended up with neuro issues.

I have been keeping a symptom/food journal since I started my elimination diet last month. I will keep a detailed log of exactly what gluten items I eat and what symptoms/when.

[jswog]

  On 10/25/2011 at 4:52 PM, Skylark said:

Waitaminute. Why are you making yourself sick for the idiot doctors? I thought you'd given up on them. Tell them you don't eat gluten because it makes you sick. End of story.

I just feel that it needs to be proven that it is, in fact, gluten that is making me sick. And, no, I've given up on getting a clear diagnosis from the doctors, but considering the fact that I am trying to conceive right now, I quite frankly am going to need doctors. So I need to do this and document it prior to getting pregnant.

[Skylark]

  On 10/25/2011 at 8:45 PM, jswog said:

I just feel that it needs to be proven that it is, in fact, gluten that is making me sick. And, no, I've given up on getting a clear diagnosis from the doctors, but considering the fact that I am trying to conceive right now, I quite frankly am going to need doctors. So I need to do this and document it prior to getting pregnant.

If you have to document it for YOURSELF, by all means do so. I'm all for science and I had to eat gluten a couple times and suffer the consequences to be sure of it. Good luck and I hope it isn't as awful as you fear!

You keep talking about "doctors" and I just don't think it's necessary to document an intolerance that you KNOW you have for anyone else by making yourself sick. My choice of foods is really not up to my doctor, or even his business as long as I'm eating healthy foods and not living on donuts and bacon.