Jump to content

  • 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:
    Support Our Content
    eNewsletter
    Donate

Very Optimistic After 6 Months - But Have A Question

TGK112

Recommended Posts

TGK112 Contributor
TGK112
Posted

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?

 

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

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.

Open Original Shared Link

"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."

Open Original Shared Link

"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."

Open Original Shared Link

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.

GFinDC Veteran
GFinDC
Posted

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! :)

GottaSki Mentor
GottaSki
Posted

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 ;)

GF Lover Rising Star
GF Lover
Posted

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 

kittty Contributor
kittty
Posted

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.

PersianCeliac Contributor
PersianCeliac
Posted

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

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

Celiac.com Sponsor (A8-M):


frieze Community Regular
frieze
Posted

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.....

GottaSki Mentor
GottaSki
Posted

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

 

 

Yes, I would rather eat sand than gluten ;)

gatita Enthusiast
gatita
Posted

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.

TGK112 Contributor
TGK112
Posted
  • Author

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!

kareng Grand Master
kareng
Posted

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!

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Healthy Gluten Free Foods low sugar that you found?

      I know gluten free proteins like eggs and yogurt but nuts especially trail mixes are tricky as they are hard to find certified gluten free trail mixes especially w/o added sugars. I agree subscription boxes are hit or miss I think I have found RXBar with simple ingredients no added sugars gluten-free might be a great protein bar.
    2. McKinleyWY
      - McKinleyWY replied to McKinleyWY's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Accuracy of testing concerns

      I sure appreciate the information. I knew there had to be gluten consumption for the blood test, but I did not realize that also applied to biopsies. Thank you so much for that nugget of knowledge. I look forward to learning more as I dive into this website and the collective knowledge, experience, and wisdom from those who have gone before and/or those...
    3. Scott Adams
      - Scott Adams replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      Thank you for sharing this — it’s really important. The FDA is actively seeking public input on improving gluten and ingredient labeling, which could directly impact how people with celiac disease and gluten sensitivity shop and stay safe. Clearer labeling would help reduce accidental gluten exposure and make it easier to identify hidden sources of gluten in ...
    4. Scott Adams
      - Scott Adams replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Low iron and vitamin d

      A low tTG is great news, but it doesn’t always mean the small intestine has fully healed yet—iron and vitamin D absorption can lag behind for months or even years, especially in young children. Many kids need supplements for a period of time while the gut repairs itself, and that doesn’t necessarily mean it will be lifelong. Morning stomach pain is also ...
    5. Scott Adams
      - Scott Adams replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Healthy Gluten Free Foods low sugar that you found?

      A lot of gluten-free packaged foods do rely on extra sugar, starches, or sodium to replace texture and flavor, so focusing on simpler options makes sense. Many people do better with naturally gluten-free proteins like eggs, plain yogurt, nuts, seeds, hummus, beans, and minimally processed protein bars with lower added sugar and higher fiber. Pairing those...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,245
    • Most Online (within 30 mins)
      7,748
    Christine Ranalli
    Newest Member
    Christine Ranalli
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • xxnonamexx
      Healthy Gluten Free Foods low sugar that you found?

      By xxnonamexx · Posted

      I know gluten free proteins like eggs and yogurt but nuts especially trail mixes are tricky as they are hard to find certified gluten free trail mixes especially w/o added sugars. I agree subscription boxes are hit or miss I think I have found RXBar with simple ingredients no added sugars gluten-free might be a great protein bar.
    • McKinleyWY
      Accuracy of testing concerns

      By McKinleyWY · Posted

      I sure appreciate the information. I knew there had to be gluten consumption for the blood test, but I did not realize that also applied to biopsies. Thank you so much for that nugget of knowledge. I look forward to learning more as I dive into this website and the collective knowledge, experience, and wisdom from those who have gone before and/or those who are just beginning the journey like me. Marilyn 
    • Scott Adams
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By Scott Adams · Posted

      Thank you for sharing this — it’s really important. The FDA is actively seeking public input on improving gluten and ingredient labeling, which could directly impact how people with celiac disease and gluten sensitivity shop and stay safe. Clearer labeling would help reduce accidental gluten exposure and make it easier to identify hidden sources of gluten in foods. I encourage everyone here who is affected by celiac or gluten sensitivity to read the announcement and submit their own suggestions — real lived experience matters and can influence policy changes that benefit the whole community.
    • Scott Adams
      Low iron and vitamin d

      By Scott Adams · Posted

      A low tTG is great news, but it doesn’t always mean the small intestine has fully healed yet—iron and vitamin D absorption can lag behind for months or even years, especially in young children. Many kids need supplements for a period of time while the gut repairs itself, and that doesn’t necessarily mean it will be lifelong. Morning stomach pain is also commonly reported in celiac kids and can be related to slow healing, reflux, motility, or even low iron itself. It sounds like the supplements are clearly helping, which is reassuring, and ongoing monitoring with her doctor can help determine when (or if) doses can be reduced as absorption improves. The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. This article has more info:    
    • Scott Adams
      Healthy Gluten Free Foods low sugar that you found?

      By Scott Adams · Posted

      A lot of gluten-free packaged foods do rely on extra sugar, starches, or sodium to replace texture and flavor, so focusing on simpler options makes sense. Many people do better with naturally gluten-free proteins like eggs, plain yogurt, nuts, seeds, hummus, beans, and minimally processed protein bars with lower added sugar and higher fiber. Pairing those with whole foods can help you feel more “normal” without triggering symptoms. Subscription boxes can be hit or miss, so checking labels carefully and using them as an occasional supplement—rather than a staple—often works best.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.