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

Oh, It's Just The New Thing!

KMMO320

By KMMO320
in Coping with Celiac Disease

Recommended Posts

KMMO320 Contributor
KMMO320
Posted

This is what EVERYONE aside from my sis in law who has celiac disease has said to me. Everyone from my husband, coworkers, my boss (I waitress), friends, family, etc. EVERYONE!

Oh, Gluten is the new bad guy, Dr's tell people it's gluten only because they dont know what it REALLY is. How can wheat cause this. Its just the new thing, its all in your head. The Dr is making you think its Gluten but its not.

And more...

Of course, most times I ignore it..but there are sometime I wonder if I am "going along" with it and believing in the new thing...

The non-support is actually more frustrating than having to eat gluten-free.

Also, everyone tells me its a way for companies to make money off me buying the "expensive food" Actually, all I have bought gluten-free so far are donuts...otherwise, I stocked my house full of just naturally gluten-free foods..

My sis in law who is Celiac has even said that only about 2%of her weekly shopping is on gluten-free foods..everything else she buys is just normal, naturally gluten-free food...

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

Celiac.com Sponsor (A8-M):


dani nero Community Regular
dani nero
Posted

Just give them a small history lesson in celiac. It was discovered ages ago. There's nothing new or "thingie" about it. It's just what it is. If people care less about educating themselves by actually reading rather than just watching silly shows, why should we bugger ourselves over it ;-)

My whole family except for my mom and hubs don't believe me, and I'm still in the process of making myself care less about what they thing.

We need to relax, care less about their "oh so insightful opinions" that come from daily shows, and enjoy our journeys to good health being gluten-free :-)

mommida Enthusiast
mommida
Posted

Here's some history. It is believed to be the "wasting away" disease described in the Bible.

The cure was discovered through the starving children of Belgum during the war. Children who had been diagnosed as failure to thrive, became "healthier" when they were STARVING. This lead to the conection ~it was food related. They usually just left the person on a banana diet.

You have to remember there was no "routine" endoscopy in the past. The furthest information gastroenterology had was from Dr. Beaumont. Dr. Beaumont had a patient that was accidentally shot in the stomach. The wound never healed properly and left in layman's terms a "window" into his gut. So Beaumont got to watch human digestion through this window and was termed "the father of gastro physiology"

If this "fad" term is happening because more people are asking to be tested. At least people are hearing about Celiac and DH begging to be tested. Because it matches symptoms that they have had for (what 40 some years depending on their age)?

One out of every 300 people are estimated to have Celiac/ DH. The number is probably higher, because doctors really haven't tested. (It was a blind study of blood supply~ only blood donations were sampled) I always get turned down for being underweight, anemic, and so on. So how are the true bunch of undiagnosed Celiacs going to donate blood? ;)

Sorry went on a Cliff Claven rant. :ph34r: :ph34r:

bartfull Rising Star
bartfull
Posted

As more and more people hear about it, even if it is through the hype from the famous people who are going gluten-free without needing to, more and more people might put two and two together. If people who actually HAVE Celiac discover it and start eating gluten-free and thereby prevent all of the terrible things that can happen to a Celiac who continues to eat wheat, it is worth it. We who truly have the disease may suffer from the taunts and pooh-poohs of others, but our suffering is nothing compared to the cancer, neurological problems, thydroid problems and the like that an undiagnosed Celiac faces.

Just last night I was talking to a lady I know about it. After hearing the non-digestive symptoms that I have, she now believes her daughter may have it. She has thydroid problems, rashes, and balance problems. I half expect her to show up here in the next day or two. I hope she gets tested, or at least tries gluten-free to see if it helps. I made it a point to direct her to this site so she can learn HOW to go gluten-free - reading labels, CC issues, all the pitfalls that await us in the grocery stores.

Pegleg84 Collaborator
Pegleg84
Posted

Yeah, I get a lot of this too. More people are eating gluten free even though they don't have Celiac or an intolerance. I'm not saying it's not healthier to eat gluten free, I just think you're crazy to do it if you don't have to!

I inherited Celiac from both sides of my family. My aunt developed thyroid cancer partially due to undiagnosed celiac. It's definitely not in your head. Also, if eating gluten free makes you feel better, then you should eat gluten-free regardless of any diagnosis.

Just tell your friends/family (as I often do) that the gluten-free diet keeps you a healthier, happier person and they don't want to be around to face the consequences if you get glutened.

Education and awareness helps (how many times have we explained our condition to someone..?), and reminding them that it's a DISEASE, not a fad, and that you wouldn't be doing it if you didn't have to.

Also, if more people eating gluten-free means better/more affordable gluten-free products for the rest of us, all the better.

(though don't get me on a rant about exploiting the celiac. When you're stuck at a restaurant where the only option is a tiny salad, or $5 extra for pizza, what do you think...)

Peg

1974girl Enthusiast
1974girl
Posted

I was scared it was going to be a passing phase..finding gluten free food in the store. But, my SIL's nephew has autism and has been told to go gluten free. Considering how high the autism rate is, it wouldn't suprise me if they find out it is caused by what we are doing to our food in America! When everything (practically) gets better when gluten free, I think the awareness will just grow...and hopefully the menu! I have friends who do gluten free for their daughter's ticks. Within 3 days they were gone. I am for finding a cure and the University of Chicago says by 2026, they will have one for celiac. However, I wish more studies would be done on how our wheat crop is different than it used to be and maybe stop these other problems as well.

KMMO320 Contributor
KMMO320
Posted
  • Author

Today's food makes me so.scared and I dont.know.if.its that medical.science is more advanced and thats why they can diagnose more problems, or that our nutrition.is so poor that more problems are arising. Scary times.

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

Celiac.com Sponsor (A8-M):


JNBunnie1 Community Regular
JNBunnie1
Posted

I have friends who do gluten free for their daughter's ticks. Within 3 days they were gone.

By this I assume you mean nervous tics, not biting ticks?

Just checking....

:ph34r: :ph34r:

jeanzdyn Apprentice
jeanzdyn
Posted

of course people who have not suffered stomach cramps or chronic diarrhea would think that you are just on a 'fad diet' or something. tell them, in graphic details, about your symptoms!

If you feel better gluten free that is all that really matters!

I want to add that, although some gluten free items are expensive, you can find a lot of gluten free foods that are not any more expensive than any other food items.

I eat a lot less now that I am gluten free, so that $3.50 bag of rice noodles is about 8 meals, and maybe 10 meals, depending on what I have with the rice noodles.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,949
    • Most Online (within 30 mins)
      7,748
    Stephanie94
    Newest Member
    Stephanie94
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Jacki Espo
      Covid caused reoccurrence of DH without eating gluten

      By Jacki Espo · Posted

      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      My only proof

      By Mari · Posted

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      Fascinating.
    • DebJ14
      Does anyone here also have Afib

      By DebJ14 · Posted

×
×
  • 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.