Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

In Need Of Advice
0

7 posts in this topic

I am 16 years old in the 11th grade and have been suffering for many years. I suffered with extreme fatigue to the point where I would sleep for 14 hours and still be tired, Severe depression and anxiety,joint pain (more than my 76 year old grandmother), decalcification of my teeth. About 2 years ago I lost 40 pounds in about a month or 2 and my mother was very worried. The hospital told us : nothing was wrong with me and other doctors said the same but one found H-Pilori and I was diagnosed with that. The thing is that even though I got past that infection, I was still sick and getting worse. About a month ago I couldn't eat without getting sick or having diarreha. My cousin is glueten sensitive so his mother told mine that I should follow that diet and I did. I got so much better - I became another person , much energy , feeling great , no more pain. I realize now that there is probably a 95% chance that I have celiac disease but I really don't want to get tested because I know that I would have to go on that horrid glueten diet again. What bothers me the most is that I could get a negative even if I go back on the diet. My question is Should I go back on the diet to get tested or just live my life this way? I dont think the pros outweigh the cons Please help, I would love to hear from others.

0

Share this post


Link to post
Share on other sites


Ads by Google:

I am 16 years old in the 11th grade and have been suffering for many years. I suffered with extreme fatigue to the point where I would sleep for 14 hours and still be tired, Severe depression and anxiety,joint pain (more than my 76 year old grandmother), decalcification of my teeth. About 2 years ago I lost 40 pounds in about a month or 2 and my mother was very worried. The hospital told us : nothing was wrong with me and other doctors said the same but one found H-Pilori and I was diagnosed with that. The thing is that even though I got past that infection, I was still sick and getting worse. About a month ago I couldn't eat without getting sick or having diarreha. My cousin is glueten sensitive so his mother told mine that I should follow that diet and I did. I got so much better - I became another person , much energy , feeling great , no more pain. I realize now that there is probably a 95% chance that I have celiac disease but I really don't want to get tested because I know that I would have to go on that horrid glueten diet again. What bothers me the most is that I could get a negative even if I go back on the diet. My question is Should I go back on the diet to get tested or just live my life this way? I dont think the pros outweigh the cons Please help, I would love to hear from others.

Hello and Welcome!

If you have a family history of Celiac and a positve response to the diet,it's likely you have Celiac Disease of a Gluten Sensitivity.

To be tested, it's recommended that a person consume gluten for three months to get the tested. Do you want to do that?

It's a personal choice. :) Not too much help, am I? :rolleyes:

0

Share this post


Link to post
Share on other sites

Hello and Welcome!

If you have a family history of Celiac and a positve response to the diet,it's likely you have Celiac Disease of a Gluten Sensitivity.

To be tested, it's recommended that a person consume gluten for three months to get the tested. Do you want to do that?

It's a personal choice. :) Not too much help, am I? :rolleyes:

I realize that it is. I plan to attend college in Fall 2013, but I am worried I wouldn't be accommodated as well if I don't have proof that I am indeed glueten intolerant. Will I be able to tell hospitals for instance that I know I am, or would I need to be tested for that?

0

Share this post


Link to post
Share on other sites

My Dvice is to find a doctor who is knowledgeable about celiac disease/NCGI (hard to do but worth it) and explain your symptoms, reaction going gluten-free, and family history.

I would ask for vitamin level tests - irons, b's, d, k, calciums, magnesium. If these are low it could support celiac disease. Ask for HLA testing, that could also support celiac disease.

Explain your concerns about school and ask for a dx. See what happens.

My ND has dx'ed me celiac based on alternative methods above, along with my raging rash. I couldn't be tested because of steroids (rash). Of course, going gluten-free was a shot in the dark anyway, but I couldn't challenge later because it was gluten and I'd be covered head to toe in my rash...

0

Share this post


Link to post
Share on other sites

If it were me, I would just call myself celiac and go with it. As for college....could be tricky...but, you may get a doc to dx you without the tests based on response to the diet and your history. Dr shop if you need to! I question whether college accomodations wud be worth it. I wouldn't trust a school cafeteria to cook me gluten-free meals without contaminating them!

0

Share this post


Link to post
Share on other sites




Are you going away to college and would you have to pay for a meal plan? This would be the only consideration I could think of for getting a diagnosis from a medical professional. I think you would be much more likely to be able to work a diagnosis out of a naturopath (ND) than an alleopathic (M.D.) doctor - they are a lot more rational about considering all the facts instead of just test results.

0

Share this post


Link to post
Share on other sites

I think I should mention that I am not from the mainland United States and am from the United States Virgin Islands. I don't even think we have those kind of doctors here.

Also I do wish to go away to college, but I am not sure if I will be able to.

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
      104,681
    • Total Posts
      921,727
  • Topics

  • Posts

    • thanks for your input, the reason I do the blood test is because I found out my duagther has it recently and she carry dq2 gene,so must be from my husband or me...im in the process waiting for my genetic test back,,by the way,I do have lots of celiac symptom,so it could be gluten sensitiive you said,thanks again.  
    • No I'm in the UK, from what I've been told that's a good thing for gluten labeling and standards compliance. What you and everyone else on here says makes me sense than what the doctors are saying (a confused message at best is what they're giving me, each one with a slightly different version of it). My referral letter is in the post so on theory appointment may not be that far away. I have a load of my favourite Quorn stuff (non-gluten-free version) in the freezer so perhaps using that up may be a good way to proceed for now. I'm out at the moment and torn whether to try chips from a café, in the strict gluten-free future would probably be a no-no but in current situation probably not so bad...
    • I also only really eat one meal a day and always after I get home. I never really feel hungrey. I call it 'Pavlov's dog in reverse'.  I think it comes from so many years of food making me sick. I have gotten to the point where I now at least can eat a sandwhich and some fruit during the day but it wasn't a quick process. When folks get like that it is very important to make sure that one meal has a good amount of both calories and nutrtion.  If your diet is how you describe you are starving yourself.  You need to get yourself used to eating again.  What helped me was carrying a baggie with some nuts and dry fruit with maybe even a handful of gluten free pretzels and always some chocolate baking chips. I just ate couple pieces when I thought of it throughout the day. A little bit of cheese and a couple safe crackers, a piece of fruit or a small tin or individual serving snack pack are also good. You need to get some nutrition during the day so you can feel up to cooking a simple full meal  for dinner. I hope your feeling better soon.
    • Ok, I can't seem to find my first lot of blood tests that were done for Celiac screening, they did include TTG I remember that much, and I am getting another copy of it but another test did come in today.  I don't know how different tests are done around the world and I don't get all the medical jargon but this is what it states, ******************************************************************************* HLA DR/DQ Genotyping for Coeliac Disease, Specimen type : EDTA blood Method : Detection of sequence-specific oligonucleotides (Gen-Probe). HLA-DR - 1, 13          DRB1 - 01, 13 HLA-DQ - 5,6        HLA-DQA1 - 5,6      HLA-DB1 - 05, 06 Interpretation : No genotype susceptibility for coeliac disease.  The DQ2 and DQ8 antigens associated with increased risk of coeliac disease were not identified in this patient.  In the absence of these antigens, coeliac disease is extremely unlikely.   *******************************************************************************   I have read the horror stories of blood tests and scope biopsies not be done right or flawed but here is what I do know as of now, At the moment the most non invasive test I can have done say negative.  I have double scopes (endoscopy and colonoscopy) booked for the 12th of October with results from biopsies expected a week or two after. Chances are they will show, a) signs of coeliac disease (even if the odds are low it can still happen), b) show signs of something else entirely and we will be busy dealing with the ramifications of that or c) it will show no signs of coeliac but I will still be suffering from gluten sensitivity (which is harder/impossible to measure clinically). My GP has told me that stress and anxiety can be a cause of all the symptoms I have been experiencing and suggests if the scopes show nothing that I may benefit from something to treat anxiety, i.e. antidepressants.  Not in a, "Oh we don't know what it is so have these," kind of way, he agrees with the thought that the scopes could indeed show coeliac, something else or even be negative. I did tell him that I could have a sensitivity and that even without benefit of clinical results, some people have gone on a gluten elimination diet for a period of time to see if they get any relief.  My question is this, if the scopes come up negative and I try eliminating gluten, how long would it be before I saw any results or improvements?  I have read enough here and elsewhere to know that everybody is different, some see results within days, some see results longer but are there any guidelines for how long a test like this should be undertaken for?  I have heard everything thing from two weeks to two months.  All of this is entirely moot at this point but I know that even if the results said clear, there would always be a little part of me that wonders if it could be a sensitivity that is the problem.  Any thoughts or advice greatly appreciated, and a thank you to all those who have taken the time to respond and offer advice and encouragement so far.        
    • We don't delete accounts but can delete any personal information and change your screen name if you would like. Just send me a personal message with three possible screen names. For the record you can edit most things in your account area with the exception of your screen name.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,682
    • Most Online
      3,093

    Newest Member
    Russ Phelps
    Joined