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

Back From My Trip...


I3Daniel

Recommended Posts

I3Daniel Apprentice

Hello!

It's so nice to be back! Two thoughts were constantly running through my mind throughout my trip: Is Daniel doing ok/eating gluten/starving to death because there's no gluten-free food in the house and he can't figure out what to buy??? and What posts am I mising on the forum??? :)

I actually had a decent time, and Daniel did perfectly fine without me! He got the Kinnickinnick delivery while I was gone, so that worked out perfectly. And, he went to the grocery store and bought himself some gluten-free items. So, that's a relief! Also, while I was gone he got a script for a Celiac blood panel!!! (see my post from today in the Pre-Diagnosis forum) I talked to Daniel this morning, and he told me that he was bored while I was gone, so one day he picked up "Dangerous Grains" [which I just "happened" to leave lying around... ;) ] and he read most of it. I am soooo glad he did this. I really think if he does some of his own reading-up on this he will feel more of a sense of the seriousness of it all, and be able to identify more with others with this disease. He started talking about how over the weekend he was noticing how angry and irritable he was feeling because he just couldn't eat what he was hungry for. Then, he showed me a paragraph in the book that discusses the withdrawal symptoms one might experience when first going gluten-free, and he said he laughed when he read it because it described him perfectly (with the exception of shortness of breath). So, I'm glad he's taking more of an interest in learning more about the disease, and I'm glad (although I wish it weren't so) he is able to identify with some of the things in the research. It's nice to know it's not just all in my head, and hopefully we're on our way to a full recovery!

It's so nice that our families are starting to come around. What Daniel's brother did for him just makes me love and appreciate his family even more. And, I was surprised to hear my mom (the most skeptical, anti-doctors person ever) tell me that she was in a grocery store and saw a ton of books there on gluten-free! It's so nice to know that although they may not completely understand or agree with everything we're doing, they're at least on our side.

Being gone (even for such a short time) and coming home to Daniel really makes me see how much I love and appreciate him. I really want to make sure we do what's right for him, so he can be happy and healthy for the rest of his life.

If there's one thing I learned on my trip, it's NEVER TAKE DANIEL TO CHICAGO! :) It's a gluten metropolis!!!

Sami


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



Celiac.com Sponsor (A8-M):



VegasCeliacBuckeye Collaborator

Sami,

There are actually a ton of places I have eaten at in Chicago.

The restaurant group, "Let us Entertain You" has a number of restaurants around town and they brag about their customer service - I have to admit, they do a damn good job and I really enjoyed their Cafe Ba Reeba restaurant.

Also, as long as you pack some gluten free goodies/snacks, he should be fine. Otherwise, you will need to get a taxi to Wild Oats or Whole Foods (assuming you did not rent a car).

I also had good meals at Gibson's, Outback and PF chang's while I was there.

NoGluGirl Contributor
Hello!

It's so nice to be back! Two thoughts were constantly running through my mind throughout my trip: Is Daniel doing ok/eating gluten/starving to death because there's no gluten-free food in the house and he can't figure out what to buy??? and What posts am I mising on the forum??? :)

I actually had a decent time, and Daniel did perfectly fine without me! He got the Kinnickinnick delivery while I was gone, so that worked out perfectly. And, he went to the grocery store and bought himself some gluten-free items. So, that's a relief! Also, while I was gone he got a script for a Celiac blood panel!!! (see my post from today in the Pre-Diagnosis forum) I talked to Daniel this morning, and he told me that he was bored while I was gone, so one day he picked up "Dangerous Grains" [which I just "happened" to leave lying around... ;) ] and he read most of it. I am soooo glad he did this. I really think if he does some of his own reading-up on this he will feel more of a sense of the seriousness of it all, and be able to identify more with others with this disease. He started talking about how over the weekend he was noticing how angry and irritable he was feeling because he just couldn't eat what he was hungry for. Then, he showed me a paragraph in the book that discusses the withdrawal symptoms one might experience when first going gluten-free, and he said he laughed when he read it because it described him perfectly (with the exception of shortness of breath). So, I'm glad he's taking more of an interest in learning more about the disease, and I'm glad (although I wish it weren't so) he is able to identify with some of the things in the research. It's nice to know it's not just all in my head, and hopefully we're on our way to a full recovery!

It's so nice that our families are starting to come around. What Daniel's brother did for him just makes me love and appreciate his family even more. And, I was surprised to hear my mom (the most skeptical, anti-doctors person ever) tell me that she was in a grocery store and saw a ton of books there on gluten-free! It's so nice to know that although they may not completely understand or agree with everything we're doing, they're at least on our side.

Being gone (even for such a short time) and coming home to Daniel really makes me see how much I love and appreciate him. I really want to make sure we do what's right for him, so he can be happy and healthy for the rest of his life.

If there's one thing I learned on my trip, it's NEVER TAKE DANIEL TO CHICAGO! :) It's a gluten metropolis!!!

Sami

Dear Sami,

I am so glad things went smoothly! :) That was wonderful he got the Kinnickinnick delivery while you were gone! It is difficult not being able to eat things you miss! You crave all of this food you cannot have! It is hard to deal with! :(

Reading that book will do him a lot of good. It makes us feel better knowing we are not hurting ourselves anymore. Eating gluten was killing us. That can be difficult to accept, but when you begin feeling better, that goes out the window! I did not really ever go into denial, because of that.

Sincerely,

NoGluGirl

Archived

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

  • 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. - trents replied to Healthierbody2026's topic in Related Issues & Disorders
      15

      New at gluten sensitivity

    2. - Dr. Gunn replied to anya22's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Test interpretations

    3. - Lotte18 posted a topic in Publications & Publicity
      0

      Prospective CRISPR research

    4. - knitty kitty replied to Healthierbody2026's topic in Related Issues & Disorders
      15

      New at gluten sensitivity

    5. - Aretaeus Cappadocia replied to Healthierbody2026's topic in Related Issues & Disorders
      15

      New at gluten sensitivity

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,702
    • Most Online (within 30 mins)
      7,748

    AMJ59
    Newest Member
    AMJ59
    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

    • trents
      @Healthierbody2026, so you say here that you were diagnosed a few years back but in your first post you say you were recently diagnosed. I am totally confused!
    • Dr. Gunn
      As has been pointed out previously, it is not unusual to have mixed tTG and EMA results with active celiac disease. While awaiting your biopsy appointment you could request celiac genetic risk testing. If you don't carry the HLA-DQ2 and/or DQ8 genes, your lifetime risk for celiac disease is < 1%. The celiac risk genes are present in close to 100% of celiac disease cases. If you do carry the genes, biopsy confirmation is essential given your history of symptoms and tTG antibody results.
    • Lotte18
      Hi all,  I'm just wondering if anyone knows whether Theresa Flores of Stanford University has been able to fund her research proposal to use CRISPR technology to directly alter our celiac genetic DNA coding?  I know there's been a lot published on using CRISPR to alter wheat so it's "less" aggravating.  But no one seems to indicate that wheat would then have to be grown in a vacuum.  My understanding is that wheat can self cross pollinate/contaminate if it's grown downwind from other strains of wheat.  Go ahead and correct me if I'm wrong.   Anyway, what I'd really like to know is, what's up with research to directly alter celiac DNA coding?  Is Flores the only person out there proposing this?  Has the NIH funded a CRISPR study for us?   Many thanks, Charlotte
    • knitty kitty
      @Healthierbody2026, Welcome to the forum.  We would like some clarification as to whether you have been diagnosed with NCGS or Celiac disease.  Many people who have gastrointestinal symptoms are diagnosed with IBD or NCGS without proper investigation into Celiac disease.  This can delay a correct diagnosis for as long as ten years or longer.  During that time, health problems related to Celiac disease that occur outside of the gastrointestinal system can show up.  One of those health problems is Diabetes.   I got misdiagnosed with IBD because there was no such thing as NCGS at that time.  I was told I was prediabetic for several years.  I became diabetic and had a cascade of health problems for more than ten years after until I was properly diagnosed with Celiac disease.   Did you have a DNA test to see if you carry any of the genes necessary to develop Celiac disease?  Did you have blood tests for anti-gluten antibodies?  Did you have an endoscopy?  Did biopsy samples show intestinal damage consistent with Celiac disease?  If not... I suggest you have a discussion with your doctor about proper testing for Celiac disease and whether you've had them done.  To diagnose NCGS, the doctor has to first rule out Celiac disease.   @trents could you link that article on antibody tests for Celiac?  Thanks!
    • Aretaeus Cappadocia
      A few starter suggestions for gluten-free living: - one of the other responses to you mentioned the Forums. On any page of this website, there is a blue banner near the top of the page with some menu choices. The menu choice "Forums" drops down and gives a selection. One Forum topic is "Gluten-Free Foods, Products, Shopping & Medications", another is "Gluten-Free Recipes & Cooking Tips". Others relate to Restaurants, Traveling, and so on. Spend some time surfing through them. - Arguably, the single best food in a gluten-free diet is quinoa. Costco sells a house brand that appears to be gluten-free at a pretty good price. Costco can be a source of some other gluten-free foods. Another resource I found after going gluten-free is AzureStandard.com. I buy a lot of gluten-free foods there. I checked just now and it looks like they have some service to parts of Alabama. - Learn to read food labels carefully and learn what to look for. Don't be shy about calling customer service. - If you can, dedicate your home to be gluten-free. Sort the foodstuffs (any thing that could end up in your mouth) you currently own into "safe" and "not safe". Give away the "not safe". Go through your kitchen systematically and clean everything once. It's like moving into a new apartment of questionable cleanliness. Once it's clean, though, you don't have to worry so much about it. - If you live in a "mixed" household (like mine), start calling gluten-containing foods "poop". Keep as much separate as you reasonably can. While we were transitioning to a safer kitchen overall, we would designate one set of dishes to be safe (and the other for poop). Our kitchen is mostly safe now and we don't segregate dishes anymore. However, when the coprophages want to eat some poop they eat it on the porch and rinse their dishes immediately afterwards. - I don't know the gluten limit for NCGS, but for celiac it is quite low: 20 ppm (parts per million) is the official standard, but some people seem to be sensitive even at that level. One, or maybe a few, breadcrumbs are supposedly enough to trigger symptoms. I haven't tried the experiment myself though. - My transition to gluten-free living has had some silver linings. My health is better. But it has also been a period of personal growth as I've taken up cooking in a serious way. I hope this helps to address your question
×
×
  • 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.