Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Help Celiac.com:
    eNewsletter
    Donate

What Is Best?


Mommyof4beans

Recommended Posts

Mommyof4beans Newbie

Hello,

I posted previously about my symptoms and history of Lupus. I have a a GI apt at the end of this month. My question- do people start the diet without every getting an official diagnoses and if so, are there any health dangers in that?

My husband would like me to continue the diet, but if there is a risk, I would rather wait. He is also afraid it might take a lot of time to get an official diagnoses. I hope this makes sense.

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



kareng Grand Master

If you aren't eating gluten, it will be hard to get a Celiac diagnosis, if you have Celiac. You don't make antibodies to gluten if there is no gluten.

Link to comment
Share on other sites
ravenwoodglass Mentor

You need to stay on gluten until all testing is done for the best chance of a accurate result. However if you have been strictly gluten free you may react strongly to adding it back in. Your regular doctor can order the celiac panel so that is waiting for the GI appt. If you haven't been gluten-free very long then there is a chance it will still be positive. If you have children it can be important to get a diagnosis since they also need to be tested, whether they have symptoms or not, if you are celiac.

Link to comment
Share on other sites
Mommyof4beans Newbie

You need to stay on gluten until all testing is done for the best chance of a accurate result. However if you have been strictly gluten free you may react strongly to adding it back in. Your regular doctor can order the celiac panel so that is waiting for the GI appt. If you haven't been gluten-free very long then there is a chance it will still be positive. If you have children it can be important to get a diagnosis since they also need to be tested, whether they have symptoms or not, if you are celiac.

Thank you for your responses. It's only been 3 days. :)

Link to comment
Share on other sites
GFinDC Veteran

Right, the blood antibodies will be reduced if you stop eating gluten. The endoscopy may still pick up some damage if they get the reight spot on the biopsy. But it may not also. The only risk is that by starting the gluten-free diet before the testing that your testing will be inaccurate. It is possible you will get inaccurate results since you have been gluten-free already.

Link to comment
Share on other sites
GottaSki Mentor

Once gluten is removed getting diagnosed with Celiac becomes harder (it is not an easy process to begin with). I can think of two major reasons to get a diagnosis:

1) already mentioned: if you have children it is important for them to be tested if you have Celiac Disease. Many symptoms of Celiac go unnoticed or are simply dismissed because it's just a little of this or a little of that. With Celiac Disease those small symptoms will continue to cause worse health problems as time goes on. There are also "Silent Celiacs" with no symptoms but the damage to the intestine has already begun - far better to get those with a genetic link tested, then wait for their bodies to become damaged. Children can often have even a tougher time getting a diagnosis than adults, so getting them tested periodically is wise. If symptoms are present and blood tests are negative, trial them on a gluten-free diet for at least 3 months to monitor symptoms.

2) some are fortunate to have major health improvement within the first days or months of removing gluten, but there are those of us - often the ones that went undiagnosed or misdiagnosed for many years - that take years to heal. There may be some improvement by removing gluten and then little or no improvement for days, weeks, months and even years. It is very difficult to be completely gluten free - I know there were many days for me that I had difficulty believing gluten was the root of my problem -- had I not had a diagnosis I don't know that I would have been as careful or diligent about staying gluten-free.

While you can certainly remove gluten without a diagnosis, I strongly suggest getting your blood work done minimally. Once gluten free, you lose the opportunity to get those initial results - which may become very valuable to you in monitoring your health.

Good Luck to you :)

Link to comment
Share on other sites
Mommyof4beans Newbie

Thank you all so much for your responses. I talked it over with my husband and I have decided to back to eating normal until I am tested. :) Gottaski, you put exactly how I feel into words about my children. I don't want to never know if I have it or not. Especially when it comes to the health of my kiddos and me being healthy for my kids.

My son has severe autism and he relies on me and my hubby to take care of him. :)

I will stay posted.

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



GottaSki Mentor

Right there with you...my kid's symptoms hurt me worse than my major ones - every time.

Glad you found us...keep asking questions...we have all gone through this and know how frustrating the diagnosis and tough the transition.

I hope your diagnosis goes quickly. Often you can call your primary to get all the blood tests. If they come back positive you may be able to get processed into gastroenterology quicker - thereby shortening the wait to remove gluten. With your symptoms I do think you should remove gluten for 3-6 months regardless of test results.

Good luck to you and your family!

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,462
    • Most Online (within 30 mins)
      7,748

    Astugart
    Newest Member
    Astugart
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      Welcome to the forum, @LimpToeTheTimeless Bone growth plates close in the late teens to early twenties, so it's doubtful you'll grow much taller, but you may start to bulk up in muscle.  Remember to boost your absorption of vitamins and minerals needed to build muscle by eating a nutritionally dense diet and supplementing with essential vitamins and minerals, especially Thiamine B1, to counteract the malabsorption caused by Celiac Disease. Keep us posted on your progress! References: The effects of endurance training and thiamine supplementation on anti-fatigue during exercise https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4241913/ A functional evaluation of anti-fatigue and exercise performance improvement following vitamin B complex supplementation in healthy humans, a randomized double-blind trial https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10542023/
    • B1rdL0ver
    • shadycharacter
      Fermentation breaks down some of the gluten in wheat. Nowhere enough for a wheat dough to become gluten free, but the gluten may be significantly reduced. I think some pizzerias make the dough the day before and leave it overnight. The longer the microbes are acting on the flour, the better.
    • LimpToeTheTimeless
      I am M 21 and I diagnosed myself after a week of fasting and slowly reintroducing stuff in my diet except gluten, I had terrible eczema scars ,dandruff and brain fog, now I am free after 6 years of just pain, I am 6'2, will I grow taller? And since I am a gymnast will my muscles grow like quicker, cause before no matter how effort I put in I just couldn't. 
    • trents
      And the fact is, no two celiacs will necessarily respond the same to gluten exposure. Some are "silent" celiacs and don't experience obvious symptoms. But that doesn't mean no harm is being done to their gut. It just means it is subclinical. 
×
×
  • Create New...