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

Very Optimistic After 6 Months - But Have A Question
0

12 posts in this topic

I just had my 6 month follow up - with great results. As for blood work - my TIGA was 4 ( normal being 0-3) - my first test it was 19, and my TIGG was a 3 (normal being 0-5) - my first test was 14. My first endoscopy showed moderate to severe damage, and six months later, my endoscopy showed complete healing. My GI was amazed at the recovery, saying that he has never seen such quick healing. I even questioned if the first diagnosis was indeed accurate. He said - considering both the blood work and biopsies, there's no doubt.

 

He said - considering how quickly I have healed - that if I would like - on special occasions "to treat myself to something special" (gluten filled), that it should be okay- as long as I immediately go back and continue on the gluten free diet. What do you all think?

 

0

Share this post


Link to post
Share on other sites


Ads by Google:

And the experts say " NO!" Perhaps you could forward this info to your doctor who knows nothing about Celiac?

this is just from 3 medical centers, there are more.

http://www.cureceliacdisease.org/living-with-celiac/guide/treatment

"A lifetime commitment

The gluten-free diet is a lifetime requirement. Eating any gluten, no matter how small an amount, can damage your intestine. This is true for anyone with the disease, including people who do not have noticeable symptoms. It can take weeks for antibody levels (indicating intestinal damage) to normalize after a person with celiac disease has consumed gluten. Depending on a person’s age at diagnosis, some problems, such as delayed growth and tooth discoloration, may not improve."

http://www.celiacdiseasecenter.org/A_Patients/A02-FAQ.htm

"Q: Is it ok if I ingest some gluten if I do not experience any symptoms?

No. The majority of patients with celiac disease experience no symptoms when they ingest gluten, either intentionally or unintentionally. This led to the concept that patients, especially children may grow out of the disease. In addition, patients also consider that it is doing no harm to them. However the ingestion of even small amounts of gluten results in damage to the small intestine--regardless of the presence or absence of symptoms--and puts the patient at risk for resulting complications including malignancies and osteoporosis."

http://bidmc.org/Centers-and-Departments/Departments/Digestive-Disease-Center/Celiac-Center/FAQ/Gluten-and-the-Gluten-Free-Diet.aspx#cheat

Can I cheat on my gluten-free diet?

Unfortunately, the answer to this question is no. Even when you are sticking to a gluten-free diet, it is impossible to eat gluten-free 100% of the time. This is because there is always some level of contamination of foods, whether it is when the food is processed, when dining out, or in your own kitchen at home. Intentional or unintentional ingestion of gluten will prevent your villi from healing well. Therefore, it is very important to follow the gluten-free diet as carefully as you can to benefit from it.

0

Share this post


Link to post
Share on other sites

Here's another way to think of it.  If you had a cut on your finger and it hurt every time you used it, would you think it was ok if it took 6 months to heal?  And if it did, would you start juggling knives the next day?

 

What I think is your doctor is giving you poor advice.  That's ok, there is plenty of free good advice on this forum! :)

0

Share this post


Link to post
Share on other sites

I'd like to offer those doctors the option to eat just a little bit of crushed glass -- really it is okay as long as they only do it once in a while for a very special treat ;)

0

Share this post


Link to post
Share on other sites

It's so sad that Doctors don't read up to date research regarding Celiac.  It's OUR lives there "guessing about".  Just one more reason to be your own advocate in your health care and do your research.  I think the MD behind some of these doctors name  really means "Mostly Dumb".

 

Colleen 

0

Share this post


Link to post
Share on other sites




My doctor said the same thing, but she already admitted that she knew nothing about celiac disease. It's sad isn't it? You'd think they would at least verify the things they say.

0

Share this post


Link to post
Share on other sites

Seriously how do these people become doctors !! Where do they get their certificates from exactly stupid university ??!

0

Share this post


Link to post
Share on other sites

I'd like to offer those doctors the option to eat just a little bit of crushed glass -- really it is okay as long as they only do it once in a while for a very special treat ;)

Actually, if the glass is realleeeyyy fine, it would probably be safer.....

0

Share this post


Link to post
Share on other sites

Actually, if the glass is realleeeyyy fine, it would probably be safer.....

 

 

Yes, I would rather eat sand than gluten ;)

0

Share this post


Link to post
Share on other sites

I am so surprised a doctor would say that!!

 

Makes me appreciate my own doc who has made it crystal clear, no more gluten. End of story.

0

Share this post


Link to post
Share on other sites

Thanks for all the responses. The doctor tried explaining - that prior to being gluten free, I was constantly inflaming my intestine - something like not letting a sore heal by constantly hitting it. Now that the intestine is healed, he said, even if it does get inflamed on rare occasion, by sticking to my apparently successful gluten free diet, it should heal very quickly.

 

It seemed to make sense at the time - but now that I've seen these comments - I'm thinking NO WAY!

0

Share this post


Link to post
Share on other sites

Thanks for all the responses. The doctor tried explaining - that prior to being gluten free, I was constantly inflaming my intestine - something like not letting a sore heal by constantly hitting it. Now that the intestine is healed, he said, even if it does get inflamed on rare occasion, by sticking to my apparently successful gluten free diet, it should heal very quickly.

 

It seemed to make sense at the time - but now that I've seen these comments - I'm thinking NO WAY!

 

 

That is for accidental glutenings.  Not on purpose ones!

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
      103,915
    • Total Posts
      919,617
  • Topics

  • Posts

    • 62 yr old woman...celiac?
      I have to agree with Gemini, you must not go gluten free until you've had an endoscopy with biopsies (first you get the blood work done, then you get your confirmation by a follow-up endoscopy), it's the reaction to the gluten that creates the antibodies' you won't get that reaction if you don't eat gluten. It might seem inconvenient, but in the long run it will be worth it.
    • Probiotic Help
      Hi Mom...I take Florajen 3.  It has worked really well for me.  It is kept refrigerated.  I have a hard time finding it where I live so I usually have to order it.
    • Awaiting Biopsy Results
      Hi monkeyloaf......with a positive tTg and EMA, that is a slam dunk for Celiac Disease. It doesn't matter that they are weakly positive, a positive is a positive with Celiac!  With a positive EMA, I am sure you will show damage on biopsy BUT if it happens that damage is patchy and they miss those spots, please do what you already stated and go strictly gluten-free.  You have Celiac!  Couple that with Type 1 diabetes and other relatives with Celiac, it is of the utmost importance  that you be gluten-free.  Your intuition is talking to you on this so these words you spoke are very smart!    I am sorry you have both AI diseases but with the right diet, you are going to be feeling so much better so hang in there!
    • Awaiting Biopsy Results
      I'm still awaiting the results of my biopsy. I have Latent Autoimmune Diabetes of Adults, which is basically type 1 diabetes diagnosed as an adult. (I was 32.) I have second degree relatives with celiac, although, my mom and my sister have yet to be tested. My mom's side of the family has a variety of autoimmune issues. My tTg-IgA was weakly positive (7.5), my DGP IgA was weakly positive (26), and my EMA was positive. My GI MD said he could see some inflammation on my duodenum during my EGD. I desperately want an answer to the issues I've been having. My primary complaints have been fatigue and joint pain, so I hadn't really considered celiac, thinking my GI issues were due to exhaustion. I am thinking I may stay gluten-free regardless of the biopsy results. I've been feeling better since cutting out gluten immediately after my EGD. I also feel like my lab work, diabetes, and family history are enough to warrant caution. Any thoughts or advice on this would be greatly appreciated. Thanks!
    • Probiotic Help
      I have Celiac and I am looking for a really good probiotic.  I have taken several different probiotics over the last year.  Can anyone recommend a good brand.  My local health food store said I should be taken ones that are kept in the frig.  Any advice would be helpful
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Jmg  »  admin

      Hello Admin!
      I don't know whether this is of interest to post on your articles feed:
      http://pratt.duke.edu/about/news/window-guts-brain
      Kind Regards,
      Matt
      · 2 replies
    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,959
    • Most Online
      1,763

    Newest Member
    Nikki Buckley
    Joined