• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Going Gf Without Official Diagnosis
0

10 posts in this topic

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?

0

Share this post


Link to post
Share on other sites
Ads by Google:
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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites
: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
0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites
Ads by Google:


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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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:

0

Share this post


Link to post
Share on other sites
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:

0

Share this post


Link to post
Share on other sites

: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

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      106,783
    • Total Posts
      932,393
  • Member Statistics

    • Total Members
      64,259
    • Most Online
      3,093

    Newest Member
    BFerris
    Joined
  • Popular Now

  • Topics

  • Posts

    • Does he run a lot? On hard ground? My ferritin started at 74 and is now 20. My rbc count was normal but showed mild anemia after an 18 hour fast.   I initially also thought it might be due to malabsorption, and it may be, although my gut doesn't show a ton of damage. Coincidentally I started running around  all of this, with A 6 month break in between, and have also recently read that Runners Who log a lot of miles generally are pretty low on ferritin if they don't supplement.  I only do between 6-15 Miles per week.  I eAt a mixed green salad about 5 times a week, red meat a couple times a week, and then a lot of other high iron foods.  lamb stew is a tremendous source of iron, as well as mussels. I am a big fan of garden lights chocolate zucchini muffins as well each mini muffin contains 20% of the daily value.  I Like to eat Two for breakfast with my coffee.  if he stopped eating gluten about a month ago you might still be able to get the blood test done. I'm sure you have read by now that you need to be eating gluten to be tested.  antibody start falling Right away but for some people it takes a long time.   I'm not a doctor but I would think that if you have enough damage to mal absorb iron then it would take a lot longer than just 4 weeks for you to  fix that kind of damage And reabsorb it again.    did they order a total iron binding capacity?  and was the iron panel done while fasting? You don't really need to fast for a ferritin but serum Iron can easily be elevated With food.  Although symptoms vary depending on the individual I have read quite a bit online that When ferritin drops below 40 people can start getting symptomaTic.  so you are likely correct that his feeling better is related to his ferritin level increasing.  giving up gluten means giving up certain nutrients as well. So if he's already vegetarian he needs to really pay close attention to what nutrients he might be missing in his diet now if he's giving up whole grains.  
    • Thank you! I will look into it! 
    • You would honestly think that after you body goes nuts attacking your insides trying to kill the gluten after 2 days of food poisoning yourself with it the damn antibodies would show up in insane levels in your blood Life is not that easy though.
    • Some days I have 3 pieces of bread, other days I just can't handle more than 1.  I had to take a day of gluten rest after the first week.  I felt too aweful. Now I'm almost done with week 2 and I feel like I need another break.  Just so hard to do something to yourself that you know will hurt.  They just don't know how much and for how long.  There was a recent study that looked at gluten challenges in folks actually diagnosed with celiac and some took months to have elevated antibodies.   Just one day at a time.  I hope things go well for you. 
    • Thank you for replying. I think you are right- why take the chance of reinfecting myself with gluten exposure again when ive been trying so hard to rid it from my life?  I just read some interesting articles on Sjogrens Syndrome and gluten sensitivity and that they are related so that may answer one of my questions. Your symptoms took over a year to resolve?! Holy moly.. I fear that is going to be my issue too. Are you feeling better now?  
  • Upcoming Events