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

I Hope I'm Doing The Right Thing!
0

8 posts in this topic

Hi. I was here several weeks ago.

I'd had an off the charts saliva test saying I'm highly intolerant (dr. said 'allergic') to gluten.

Soooo...I decided I just had to know if I'm celiac or not.

Went to GI dr.

He ordered bloodwork, unsure of validity of saliva testing.

All bloodwork negative, including bloodwork of the same test I took by saliva.

He even called the lab that does the saliva, who told him a false positive could happen if one has parasites.

Did a poo test.

Sent it to the lab.

Parasite free.

Decide to do the biopsy, though GI dr. highly doubts celiac.

It was scheduled for yesterday.

I was sick and canceled.

I have had pain in my feet and legs and back that suddenly onset (first in feet) a year ago. The only tests of allll my xrays, nearly full body MRIs, every kind of bloodwork you can imagine....

They only could find 'for certain': Vitamin D deficiency, which I'm now recovered from.

and now this saliva test.

I'm tired of the pain. I don't feel I can wait any longer to do the test.

Tonight I decided I'm gluten-free.

My 7 year old has awful constipation and ezcema. She is adopted. (saying this b/c we are not blood related to think of a link between us for intolerance or celiac).

Her bloodwork was negative.

Thinking of taking her off without a biopsy.

Thanks for listening and for your support.

0

Share this post


Link to post
Share on other sites


Ads by Google:

I went gluten-free 11 months ago, about a month after my symptoms started. My blood test and endoscopy biopsy were negative, but the celiac panel was several months after going gluten-free and the 1 biopsy was after a only week of being on gluten. They may have been false negative. I do have the HLA-DQ8 genetic marker, but the GI said that only gave me a 10% chance of celiac; he thought all my GI problems were diverticulitis, and he dismissed all my other symptoms (brain fog, lethargy, stiff joints, muscle aches, etc). Needless to say the large number of colon biopsies were negative and there were no diverticuli. So, it is sometimes more important to trust your body more than the doctors. Going gluten-free is work from social, financial, and food standpoints, but it is worth it. I'm a stronger biker than I've been for years, I haven't caught a cold since going gluten-free (I'm usually a virus magnet), and I feel much better. It is a tough decision that you are making, but it can be important for your health. If you have not done so, research all the ways that gluten can hide in food and cross contamination. :)

2

Share this post


Link to post
Share on other sites

I would recommend rescheduling the endoscopy. Being gluten free is not easy. It's also not easy explaining to people WHY you are gluten free, especially if you dont have a formal diagnosis. It might all sound rosy and wonderful right now, but wait a few months until you are hungry and someone offers you food and tells you it's gluten free but you're not sure. If you HAVE a formal diagnosis by endoscopy, you will say "No, thank you" and wait until you can get something you KNOW is gluten free. You will have no trouble telling people, "I can't eat gluten because I have Celiac Disease". If you diagnose yourself, a few months down the road it is going to be all too easy to get lax on the diet and then you're going to be right back where you are now. The test is no big deal and is over before you know it. Why not get it done so you have proof. Also, why spend all this time and money not eating gluten if you do NOT have Celiac Disease? Life is a LOT easier when you have a proven diagnosis, in my opinion.

0

Share this post


Link to post
Share on other sites

I went gluten-free 11 months ago, about a month after my symptoms started. My blood test and endoscopy biopsy were negative, but the celiac panel was several months after going gluten-free and the 1 biopsy was after a only week of being on gluten. They may have been false negative. I do have the HLA-DQ8 genetic marker, but the GI said that only gave me a 10% chance of celiac; he thought all my GI problems were diverticulitis, and he dismissed all my other symptoms (brain fog, lethargy, stiff joints, muscle aches, etc). Needless to say the large number of colon biopsies were negative and there were no diverticuli. So, it is sometimes more important to trust your body more than the doctors. Going gluten-free is work from social, financial, and food standpoints, but it is worth it. I'm a stronger biker than I've been for years, I haven't caught a cold since going gluten-free (I'm usually a virus magnet), and I feel much better. It is a tough decision that you are making, but it can be important for your health. If you have not done so, research all the ways that gluten can hide in food and cross contamination. :)

Kay--thanks a million for this post. How encouraging to hear. I'm so glad to hear that in spite of all the testing, you took the plunge and are noticing such positive results. I appreciate you taking the time to share your story with me. I'm sure I'll see you around the site.

0

Share this post


Link to post
Share on other sites

I would recommend rescheduling the endoscopy. Being gluten free is not easy. It's also not easy explaining to people WHY you are gluten free, especially if you dont have a formal diagnosis. It might all sound rosy and wonderful right now, but wait a few months until you are hungry and someone offers you food and tells you it's gluten free but you're not sure. If you HAVE a formal diagnosis by endoscopy, you will say "No, thank you" and wait until you can get something you KNOW is gluten free. You will have no trouble telling people, "I can't eat gluten because I have Celiac Disease". If you diagnose yourself, a few months down the road it is going to be all too easy to get lax on the diet and then you're going to be right back where you are now. The test is no big deal and is over before you know it. Why not get it done so you have proof. Also, why spend all this time and money not eating gluten if you do NOT have Celiac Disease? Life is a LOT easier when you have a proven diagnosis, in my opinion.

Hello, fellow homeschooling Mama! I am homeschooling 4 of my own. congrats on being preggo with #4!

I very much appreciate your comments and will be taking them into prayerful consideration.

Thank you for sharing your struggle and story as well.

Hope to see you around here.

0

Share this post


Link to post
Share on other sites




Rescheduled my biopsy for next week.

not looking forward to the procedure,

but I do think I'll regret not doing this final 'check'.

thanks again for the feedback!

Still on gluten for a little while longer!

0

Share this post


Link to post
Share on other sites

I would recommend rescheduling the endoscopy. Being gluten free is not easy. It's also not easy explaining to people WHY you are gluten free, especially if you dont have a formal diagnosis. It might all sound rosy and wonderful right now, but wait a few months until you are hungry and someone offers you food and tells you it's gluten free but you're not sure. If you HAVE a formal diagnosis by endoscopy, you will say "No, thank you" and wait until you can get something you KNOW is gluten free. You will have no trouble telling people, "I can't eat gluten because I have Celiac Disease". If you diagnose yourself, a few months down the road it is going to be all too easy to get lax on the diet and then you're going to be right back where you are now. The test is no big deal and is over before you know it. Why not get it done so you have proof. Also, why spend all this time and money not eating gluten if you do NOT have Celiac Disease? Life is a LOT easier when you have a proven diagnosis, in my opinion.

Depends on how sick gluten makes you. I self-diagnosed have no problems at all turning down gluten or explaining myself, as I'm sick for a couple days after eating traces of it. I just tell people I'm celiac. You say what you need to stay away from poison! Nobody has my medical records but me and my doctor, so how would they know otherwise? Besides, doctors say I probably am celiac and I've had three different doctors tell me that there is no sense breaking a strict gluten-free diet that's maintaining my health for a challenge with a series of somewhat unreliable tests.

1

Share this post


Link to post
Share on other sites

Rescheduled my biopsy for next week.

not looking forward to the procedure,

but I do think I'll regret not doing this final 'check'.

thanks again for the feedback!

Still on gluten for a little while longer!

Just keep in mind that false negatives on the biopsy are not uncommon. Do try the diet strictly after the biopsy is done. Your body does know the answer.

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
      104,131
    • Total Posts
      919,521
  • Topics

  • Posts

    • Cyclinglady is absolutely correct, after hours of internet research the only gluten-free food available at JNB is a fast food chain called 'Nandos'. I was hoping for a bit more variety, but I'll take what I get.   
    • I'm so confused about my daughter's diagnosis.  I hope somebody can help.   My 4 year old daughter has a swollen belly, stomachaches, and lots of gas.  She does not have diarrhea or delayed growth.  Because of her symptoms and because it runs in the family (2nd degree relatives) I had her tested for celiac.   She was weak positive for TTG (IGA)  and strong positive for DGP (IGG)   TTG (IGA)  8   (0-3 neg, 4-10 weak positive, greater than 10 positive) TTG (IGG)  2   EMA: Negative DGP (IGG)  47  (0-19 negative, 20-30 weak positive, greater than 30 positive) Last week, she had her endoscopy.  The doctor found inflammation and little holes or bumps on her duodenum.  He started her on prevacid and said based on his observations, he was suspicious of celiac, but he would not be able to confirm until the biopsy came back. The biopsy showed no signs of celiac disease.  He said that he could not diagnose her with celiac without the biopsy report saying there was celiac damage.  He said he would categorize her as a potential celiac, keep her on a gluten diet and redo the endoscopy in a year or two to check for damage again.  My questions are: 1.)  If it is not celiac, something is causing her duodenum to be inflamed and have little holes or bumps on it, right?  Could it be a wheat allergy or gluten sensitivity?  What else could it be and how do they test for it?  Given her elevated celiac antibodies, how likely is it to be anything besides celiac causing the damage?  2.)  How likely are false positives for TTG and DGP?  I've heard they are pretty sensitive and specific.  Does getting two positives make false positives less likely? 3.) What have you done in this situation?  I want her to have an official diagnosis to make things easier at school and to feel confident that we are eliminating gluten permanently for a worthy reason, etc.  But, I'm having a hard time imagining keeping her on gluten and waiting for her to get more sick and have more intestinal damage just for a diagnosis.     Thanks in advance for your help.  I'm so overwhelmed and confused.  I hope someone has some insight and experience that will help clear things up for me.            
    • Yeah I actually live in Japan which is pretty similar, because Coeliac disease is rare over here so is the understanding and accommodating it. When I mention Gluten to some restaurants they think I am talking in English and they are unfamiliar with the word in Japanese.    So it seems I can write off my chances of getting some authentic Chinese gluten-free food at the airport, but at least there is a Thai restaurant in T3 so I won't starve. Its called  'Phrik Thai' for future reference. http://en-shopping.bcia.com.cn/store/739.html  
    • While in Boston I found Cheer's  Bloody Mary mix that says gluten-free on the bottle and have had no issues and  tastes pretty good 
    • I always assumed plain coffee was, but I have seen some controversy online about this. I know someone who is gluten free and only buys whole beans and grinds them herself because she doesn't trust how the grounds are processed.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,167
    • Most Online
      1,763

    Newest Member
    Cristina17
    Joined