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Going Gf Without Official Diagnosis


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9 replies to this topic

#1 dbuhl79

 
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Posted 04 November 2004 - 07:39 AM

Well, as I am sure you can all relate to, I'm worn out from doctor appointments. I can't even schedule my own appointment with the hospital's GI Celiac Specialist, my PCP has to call and schedule it. Which they seem to be stalling in their efforts to do so.

As I continue my gluten consuming, I am pondering scratching the doctor visits and just going gluten-free, self-diagnosed. As I know I anticipate a GI Consult, then depending on what they think either a biopsy or a pat on the head claiming I have IBS.

My question is, would it be harmful to just pursue a gluten-free lifestyle without being officialy diagnosed? I realize its not the traditional route, but I'm wearing myself out and my finances (with co-pays) seeing the doctor. All the meanwhile suffering in anticipation of some answer or solution.

The only risk I see taking this way, is missing the diagnosis of something more serous thats not IBS or celiac disease.

Any thoughts?
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Positive Dietary Challenge, firmly believing gluten-free is the way to be!
gluten-free since Nov. 18, 2004.

Always learning along with the rest of everyone else... a never ending process.
Dana :)

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#2 lovegrov

 
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Posted 04 November 2004 - 08:59 AM

"The only risk I see taking this way, is missing the diagnosis of something more serous thats not IBS or celiac disease."

That's the only risk I can see.

richard
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#3 kvogt

 
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Posted 04 November 2004 - 09:32 AM

It's said a person how serves as his/her own physician has a fool for a doctor, but reading these boards there seems to be no shortage of fools in the medical community already...

I'd say it's rather improbable a gluten-free diet will cause you to improve from some other ailment. If it doesn't help you, go back to the doctor.
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#4 darlindeb25

 
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Posted 04 November 2004 - 09:42 AM

:D agree totally--going gluten free can not hurt you and --i only wish i had known about gluten years ago when i was being told IBS, spastic colon, and before i started having panic attacks and all those other problems that brought me down :( --gluten-free has been a life saver for me :) --i can actually plan to go somewhere now and not have to worry that i will be sick that day :D --my dad has been sick for 3 years now, last week his doctor told him he thought it time that he try gluten-free and see if the helps--now, that's a diagnosis, dont ya think ;)--like we say--gluten-free can not hurt you and it may be a life saver for you--deb
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Deb
Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

#5 dbuhl79

 
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Posted 04 November 2004 - 11:33 AM

Thanks for the input. If they ever do make my appt with the GI specialist, I may humor the doctors and go to that.

Another question, and this may sound odd. But for those of you who suffer with digestive upset due to Celiac Disease, do you ever find a bowel movement does not relieve the suffering?

I personally start out with abomdinal discomfort (pain, cramping, etc.) and after a BM, I tend to remain with the discomfort. Sometimes its worse.

Thanks again for the commentary.. Its really appreciated from all of you Celiac veterans!
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Positive Dietary Challenge, firmly believing gluten-free is the way to be!
gluten-free since Nov. 18, 2004.

Always learning along with the rest of everyone else... a never ending process.
Dana :)

#6 burdee

 
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Posted 04 November 2004 - 02:50 PM

I'll answer your abdominal discomfort question. I can understand how you would expect a BM to relieve discomfort, because I experience cramping, bloating, gas after gluten/dairy/soy slips just like I experience before diarrhea (but I rarely have diarrhea). However, I have also noticed that evacuating my bowel does NOT relieve that cramping. I suspect that gluten/dairy antibodies attacking my intestinal villi causes the pain. After the offending substance and antibodies pass, I STILL feel cramping pain whenever even safe foods pass through starting 3 hours after a meal for several days. After accidental gluten ingestion, I can have cramping pain for up to a week ... with dairy it's 3-5 days. Drinking strong peppermint tea or exercise (esp. walking) helps to relieve those cramps. ;)
BURDEE
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Gluten, dairy, soy, egg, cane sugar, vanilla and nutmeg free. Enterolab diagnosed gluten/casein intolerant 7/04; soy intolerant 8/07. ELISA test diagnosed egg/cane sugar IgG allergies 8/06; vanilla/nutmeg 8/06. 2006-10 diagnosed by DNA Microbial stool tests and successfully treated: Klebsiella, Enterobacter Cloaecae, Cryptosporidia, Candida, C-diff, Achromobacter, H. Pylori and Dientamoeba Fragilis. 6/10 Heidelberg capsule test diagnosed hypochloridia. Vitamin D deficiency, hypothyroiditis, hypochloridia and low white blood cells caused vulnerability to infections. I now take Betaine HCl, probiotics, Vitamin D and T3 thyroid supplement to maintain immunity.


#7 dbuhl79

 
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Posted 05 November 2004 - 06:55 AM

Thanks, because that abdominal pain has been a mystery to me. I kept pondering if it was sign of something more serious.

Well I do have good news folks. I finally called the GI Celiac Disease specialist to see if my appt. had been made YET by my PCP, and it hadn't. However, the secretary apologized profusely and told me of a cancellation next Wednesday. Finally some steps towards answers! I am absolutely delighted to be going to this appointment. Now lets hope she doesn't look at me like I'm crazy for suggesting a gluten intolerance. I can't imagine my week off gluten was a thorough enough challenge.

Thanks for the input everyone.. I' ll keep you posted if I get to join the official gluten-free Club.
Dana
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Positive Dietary Challenge, firmly believing gluten-free is the way to be!
gluten-free since Nov. 18, 2004.

Always learning along with the rest of everyone else... a never ending process.
Dana :)

#8 stef_the_kicking_cuty

 
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Posted 05 November 2004 - 01:16 PM

Are you having a biopsy at this appointment or will there only be the bloodwork done? Because with me i had one week glutenfree before my bloodwork and it came back negative. The hilarious thing was, that my doctor didn't even know, that glutenfree before the bloodwork can falsify the result. How dumb... :blink:
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August 20-27: Karate and Kickboxing World Championships in Germany (my homecountry)
gluten-free since 07/21/2004
Shermans Dale, PA

#9 FreyaUSA

 
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Posted 05 November 2004 - 05:30 PM

The hilarious thing was, that my doctor didn't even know, that glutenfree before the bloodwork can falsify the result. How dumb... :blink:

I'd been gluten-free for over EIGHT WEEKS and my doctor said it wouldn't effect the results. :wacko:
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#10 dbuhl79

 
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Posted 06 November 2004 - 04:31 AM

:D Well I must confess this is my first GI visit so it is only a consult. I will be lucky if they do a blood test. I certainly hope this doctor knows about the effects of gluten-free on the blood test results because she tough to get into and is a specialist in Celiacc Disease (imagine my luck!).

So, I am hoping this consult will lead to the suggestion of a biopsy, or possible other solutionsto my digestive issues. It may not be Celiac Disease, thats just my guess at this point. Since I can't seem to clue in the "d" to anyting else such as lactose, bacteria, etc. My regular PCP has tested and exhausted their resources (not to mention there only a resident phy.). So this is the next step. I'm just delighted I got a referal to see a GI doc. I've been miserable for the past couple months, and driving my significant other up a wall with my doctor appointments.

I'll be sure to let you all know what my success is with this appointment.

Dana
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Positive Dietary Challenge, firmly believing gluten-free is the way to be!
gluten-free since Nov. 18, 2004.

Always learning along with the rest of everyone else... a never ending process.
Dana :)




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