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Going Gf Without Official Diagnosis
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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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Ads by Google:

"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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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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: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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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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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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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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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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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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: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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    • I just now saw the second reply and I see what you mean. Again, the issue is that I may have to go with the gluten until close to the end of the year.

      However, an idea did just come to mind, and that is, can my primary care doctor do such a test? I had normal blood work done, but they didn't really say anything about testing for celiacs. I can get an appointment with my primary care doctor much sooner than a GI.

      When I was talking to my PCP last, I asked her what I should expect as far as testing goes or what she may have been concerned about. Her reply was about a HIDA scan for the gallbladder but also any test needed in case of IBS or Celiacs. Just the way she threw that in there like an after thought and left me hanging kinda had me worried.
    • I am not a doctor that's for sure.  So, I can't even answer your questions.  If you know you have pre-diabetes, you probably are working with a doctor.  Can you email them and ask for a celiac blood panel?   You can work on the weight loss and diabetes -- that you can handle yourself now and take action.  I have diabetes and my glucose readings are fairly normal now without medication and I'm thin.  Being overweight does not cause diabetes.  It's either autoimmune (type 1) or you become insulin resistant (type 2).  You can cut out all sugar and  processed stuff ASAP to help take action and start walking 10,000 steps (helps with the insulin resistance).    But the prediabetes is not going to kill you in the next year.  Whatever's in your gut is more likely going to get you much sooner.  But heck, I'm not a doctor and I don't even know you!    
    • Hi Steph, Yes, celiac disease can cause a myriad of symptoms and damage to the body,  Have you completed all celiac disease testing?  Usually they do the blood antibodies test first and then do an endoscopy.   You shouldn't go gluten-free until all testing is completed. Gluten is in many processed foods.  But if you stick with whole foods it is not hard to avoid gluten.  Getting used to eating gluten-free may take some time, as we need to adjust our preferences in diet.  But there are many foods that are naturally gluten-free.  Gluten is the protein found in wheat, rye and barley.  Some celiac disease organizations recommend avoiding oats also for the first 18 months of the gluten-free diet. Celiac disease impairs the ability of the body to absorb nutrients (including vitamins).  That can make it hard for the body to maintain itself and heal/repair damage.  So celiac can easily impact any part of the body. Sardines, tuna, mackeral and salmon have good amounts of vitamin D in them.  There are supplements available also, but not all are good.  You can check them at the labdoor website.  Nature Made is a good one and not expensive.  Internal damage from celiac can cause liver issues.  Those will probably clear up after being on the gluten-free diet a while. Recovery from celiac can take  months, and can be a rocky road.  The more you stick with whole foods and avoid cross-contamination issues the sooner you will heal IMHO. You may find that dairy causes problems for your digestion at first.  But it make stop being a problem after you have healed up some. welcome to the forum!
    • Will this be dangerous considering how long I have to wait for any testing? I may not even get a blood test in November but here is hoping. I just worry having to wait so long will cause serious issues, not to mention delay of weight loss which I need for the pre-diabetes. Do ulcers have a chance to cause yellow stools though? I suppose a stool test will be needed for that for any signs of blood in stools but visually it does not seem so. The biggest issue is not knowing what else could be causing the yellow stools as this would not be a diabetic or ulcer thing. And without negative signs on the gallbladder or liver, it is narrowing down the list.

      At the very least this is making me assume I can wait on a final scan of gallbladder and attempt blood tests and endoscopy if they recommend it.
    • The first step is getting a celiac blood panel.   Any medical doctor can order one.  Live near Chicago?  They are do free screenings this month (check their website).  The cost is less than $400 for the complete panel.  If you get a positive on any one of them, then you should be referred to a GI for an endoscopy to obtain intestinal biopsies.   Here's more information from a reliable source and not just some lady on the internet: http://www.cureceliacdisease.org/screening/ Having had my gallbladder removed (probably ruined from undiagnosed celiac disease, but I don't know that for sure), I would recommend a HIDA scan.  I have no idea how expensive that one is.  It's a nuclear test that checks for functionality.  Basically, is your gallbladder squeezing bile into your small intestines when those fries or bacon come down the tube.  Mine happened to actually be rotting (infected).  ER suspected appendicitis, but it was a rotten gallbladder.  I never had any stones (that's what the CT or the ultrasound can find).  I am sorry that you are ill.  Keep eating gluten until all testing is complete.  This is important.  Go gluten free now?  Here's why you shouldn't..... http://theceliacmd.com/2013/04/six-reasons-to-test-for-celiac-disease-before-starting-a-gluten-free-diet/  
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