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

Word Must Be Getting Out


par18

Recommended Posts

par18 Apprentice

In the past 48 hours I have met two total strangers both of whom have gone gluten free without any diagnosis from the medical profession. It was my understanding both did so after doing research on the internet concerning their gastro issues. To me this is very encouraging as more and more people are finding their way to this possible solution on their own.

One person has been on the diet for over a year and the other is just starting. Neither seemed overly concerned about the prospect of having to do this the rest of their life. Both were open about discussing their symptoms (just like most of us) and I did not sense any reservations on their part. I told them how impressed I was with their effort and wished both of them luck. Both encounters were in grocery stores. One worked as a cashier and the other was shopping in the gluten free section. Both were young women in their teens or early twenties. I sensed a lot of maturity when speaking to each of them. The word is getting around.

Tom


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



Celiac.com Sponsor (A8-M):



Lisa Mentor

Tom:

In the two years since I was diagnoses and learned what in the world Celiac Disease, I have witnessed tremendous awareness.

You are familiar with my hometown. We had no gluten free products. This week the Food Lion (one of two grocery stores) put in a huge health food section and more gluten free products that I only have heard about from this site. Talk about a kid in a candy store.

It's also good product marketing to the "Boomer" generation.

bluejeangirl Contributor

I've been in the gluten free aisle in the store and I'm always amazed how friendly people are who are looking at the same time. I've been asked several times if I'm gluten free and how long etc., etc. People are so willing to share tips and I've been invited to come to meetings. The other day I was in Barnes and Noble looking at G.F. cook books and another gal comes over right by me and I noticed she pulls a G.F. cookbook down. It didn't take long and we were sharing stories of how long we had to suffer before we got the right diagnosis.

I'm so happy there is the awareness out there now. It's not such a loner disease anymore.

Gail

gfpaperdoll Rookie

I think there are a lot of people out there that have gone gluten-free without a diagnosis. I know a lady from my office building that she & her daughter & a friend are all gluten-free & DF & they have no intention of getting a diagnosis, & they are very strict on the diet & do not cheat. They all had a lof of gastro problems and were constantly at the doctors office. No more, they laugh about not making appointments and spending all that money at the doctors office. they had everyone in their apartment complex researching on the internet for them - in addition to talking to me, & they said that all the people in the complex were amazed with what they learned...

With all the publicity that gluten-free is getting now, I think that there are a lot of people that have looked at their health & the health of their families and figurered it out & just threw out the flour etc. There are a lot of people out there that are now used to getting their info on the internet & they are checking it out.

I would also like to say that I have been amazed at the diagnosed celiac people that I know that do not belong to a support group and do not post to the internet etc. I live in a poor part of Houston & the local grocery has a nice gluten-free section and it is sometimes sold out of the best things, people are buying this stuff. & one of the main whole Foods here in town, sometimes you can go thru there & say yes, someone from out of town has been in here & claned out all the Lundberg Rice Chips, the brownie mixes etc etc. Sometimes I am guilty of buying the last three boxes of something myself, maybe picking up a few things to gift to my friends, etc.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,559
    • Most Online (within 30 mins)
      7,748

    Valerie Ensor
    Newest Member
    Valerie Ensor
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
    • knitty kitty
      Hi, @Ginger38, I've had shingles in the past.  I understand how miserable you're feeling.   Not only do i have the chickenpox virus lurking about, I also have the cold sore virus that occasionally flares with a huge cold sore on my lip when stressed or exposed to gluten.  The virus lives dormant in the nerves on the left side of my face.  It causes Bell's Palsy (resulting in drooling).  The cold sore virus is also in my eye.  My eye swells up and my vision is diminished permanently whenever I have a flare, so it's of the utmost importance to keep flares away and treat them immediately if they do happen so I don't lose any more vision.   I take the amino acid supplement L-Lysine.  Lysine messes with the replication of viruses, which helps the body fight them off.   I haven't had an outbreak for several years until this year when exceptionally stressed and contaminated, it flared up again. Lysine has been shown to be beneficial in suppression of viruses like the cold sore virus (a herpetic virus), the chickenpox virus (also a herpetic virus), as well as the HIV virus, and even the Covid virus.   I also take additional Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) because Thiamine has antiviral properties as well.   For pain, a combination of Thiamine (like TTFD or Benfotiamine or Thiamine Hydrochloride), with B12 Cobalamine, and Pyridoxine B6 have been shown to have analgesic properties which relieve pain and neuropathy.    The combination of Thiamine B1, Pyridoxine B6 and Cobalamine B12 really does work to relieve pain.  I take it for back pain from crushed vertebrae in my back.  This combination also works on other pain and neuropathy.   I usually buy a supplement that combines all three and also Riboflavin B2 called EXPLUS online.  However, it's made in Japan and the price with the tariffs added makes it really expensive now.  But the combination of Thiamine B1, Pyridoxine B6 and B12 Cobalamine (and Riboflavin B2) still work even if taken separately.   I can't take Tylenol or ibuprofen because of stomach upsets.  But I can take the vitamin combination without side effects.  However, you can take the three vitamins at the same time as other pain relievers for added benefit.  The vitamins help other pain relievers work better. I hope you will try it.  Hopeful you'll feel better quickly. Interesting Reading: Thiamine, cobalamin, locally injected alone or combination for herpetic itching: a single-center randomized controlled trial https://pubmed.ncbi.nlm.nih.gov/23887347/ Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/ Analgesic and analgesia-potentiating action of B vitamins https://pubmed.ncbi.nlm.nih.gov/12799982/ A Narrative Review of Alternative Symptomatic Treatments for Herpes Simplex Virus https://pmc.ncbi.nlm.nih.gov/articles/PMC10301284/
    • Mari
      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
×
×
  • 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.