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

Gluten Free Poll

twe0708

By twe0708
in Coping with Celiac Disease

Recommended Posts

Roda Rising Star
Roda
Posted
How many years have you been trying to live a gluten-free life?

How often or many times do you think you've been hit with wheat?

Anyone been diagnosed with cancer, kidney or liver problems?

Have you ever said "what the hell" and just ate something you aren't supposed to?

What is your age?

One year

Wheat in particular at least once. I ate an otherwise gluten free macaroon that a friend of mine placed on top of a brownie. It was only a month after I went gluten free and she tried really hard and I ate it so I would not hurt her feelings. Won't do that again. I have been hit with either cc or barly malt in "natural flavors" once by not verifying. I tried gluten free oats after 7 months gluten free in some cookies I made. I had a horrible reaction from them so I am even gluten free oats free.

No.

Sort of. My husband had some cheese that had beer in it. I took a very small nibble. I did not have any problem from it, but really decided that the cheese was not good! :lol: I ate some tortillia chips from a local mexican restraunt that someone had left over at work. They were more than likely fried in contaminated oil and who knows if they had wheat in them. Learned my lesson because the chips gave me wicked heartburn.

I am 36 years old.

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

Celiac.com Sponsor (A8-M):


Switch2GF Rookie
Switch2GF
Posted

How many years have you been trying to live a gluten-free life?

Diagnosed 5 years ago- officially gluten-free for 1 year. Had solid spurts of gluten-free during those first years, but always eventually relapsed.

How often or many times do you think you've been hit with wheat?

I'd say once every month or two I accidentally am glutened, almost always when out to eat. Honestly, if you eat out, it is going to happen whether you know it or not.

Anyone been diagnosed with cancer, kidney or liver problems?

Nothing yet, thankfully!

Have you ever said "what the hell" and just ate something you aren't supposed to?

Once in the past year... avoiding an awkward situation(long story).

What is your age?

Male - 25

(Just had to put male, since I am finding I am in the far minority in the active gluten free online community :D )

Karrin Rookie
Karrin
Posted

How many years have you been trying to live a gluten-free life? Started June 2009

How often or many times do you think you've been hit with wheat? Probably once a month in small cc'd doses.

Anyone been diagnosed with cancer, kidney or liver problems? Just got over a kidney infection.

Have you ever said "what the hell" and just ate something you aren't supposed to?

Yes, homemade pumpkin custard that I suspected might have been cc'd.

What is your age?

27

foodiegurl Collaborator
foodiegurl
Posted

How many years have you been trying to live a gluten-free life?

Since March 2009

How often or many times do you think you've been hit with wheat?

three time, I believe

Anyone been diagnosed with cancer, kidney or liver problems?

I had severe-pre-eclampsia and HELLP when I was pg (pre-diagnosis), and it effected my liver and kidneys while pg, but corrected itself after delivery.

Have you ever said "what the hell" and just ate something you aren't supposed to?

No way!!

What is your age?

37

jenngolightly Contributor
jenngolightly
Posted

How many years have you been trying to live a gluten-free life?

2

How often or many times do you think you've been hit with wheat?

Too many - we don't eat out anymore... uh, well, except last weekend when we went to Boston Market and YES I got glutened dammit.

Anyone been diagnosed with cancer, kidney or liver problems?

No (but yes to osteoporosis and neurological issues and...)

Have you ever said "what the hell" and just ate something you aren't supposed to?

Never

What is your age?

39

gettinbetterbaby Newbie
gettinbetterbaby
Posted

How many years have you been trying to live a gluten-free life? One year and a couple of months.

How often or many times do you think you've been hit with wheat?

Maybe 10 or more times since the start. The learning curve was steep, and so it happens less often now, but still way too often (always when eating out). The longest I've felt well is 23 days in a row, which was phenomenal. Before that it was nine days.

Anyone been diagnosed with cancer, kidney or liver problems?

Two or three years before becoming gluten-free I was sent to a kidney doctor (nephrologist), for odd blood work; I was "dumping" potassium, magnesium and salt. He couldn't determine the cause, wondered if I was vomiting or taking laxatives: No. Weeks later, after consultation with colleagues, he diagnosed Gitelman Syndrome or Bartel's Syndrome, which is just a collection of symptoms. He was puzzled. I was too. I had mentioned stomach aches too, as I have over the past twenty years to all doctors with whom I've had contact. That led nowhere as always. So I treated the deficiency with magnesium supplements and noticed unexpectedly my stomach felt better for awhile, which was a bonus. I eventually put all this together myself, later, with much help from all of you on this forum who I'd like to thank here. I have learned so much.

Have you ever said "what the hell" and just ate something you aren't supposed to?

Never, but I've eaten around things I'm not supposed to eat, that was touching, and have most recently learned not to do this.

What is your age?

44

luvs2eat Collaborator
luvs2eat
Posted

How many years have you been trying to live a gluten-free life?

7 years

How often or many times do you think you've been hit with wheat?

In the beginning, when I thought I was being gluten-free, but was making tons of mistake... lots. Now... maybe once or twice a year??

Anyone been diagnosed with cancer, kidney or liver problems?

Nope

Have you ever said "what the hell" and just ate something you aren't supposed to?

ONCE... when I'd been gluten-free for about a year, I scarfed down a huge slice of homemade bread w/ butter and nothing happened!! I had this idea that I could "plan" a cheat... maybe monthly. But... the longer I was gluten-free, the more sensitive I became and now I would NEVER, EVER say "what the hell"... EVER.

What is your age? 56. Two of my 3 daughters have been diagnosed too.

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

Celiac.com Sponsor (A8-M):


spicenator3000 Apprentice
spicenator3000
Posted

Trying to live a gluten free life for 5 years, had it since childhood and didn't know (lived with pain/problems).

Some how I get gluten about every month now, getting the diet and other products under control takes a long long time. Takes me about two weeks to get back to normal digestion (if I do my procedure of recovery).

Diagnosed with cancer at age 20-Non-Hodgkin's Lymphoma (about the size of a grapefruit in between my heart and lung-acted like heart attack symptoms). Also had malnutrition problems from childhood still lingering, cysts, and minor issues that come and go. Family has had many cases of cancer, liver disease, kidney, reproductive and neurological issues. Seems that those people before me had celiac disease and never were diagnosed. This leads me to believe it gets worse every generation that is not taken care of.

Absolutely have just ate stuff I wasn't sure was gluten-free. Typical human nature to rebel against what I know is right and wrong.

I am now 25, will be 26 in 3 months. So 6 years cancer free.

Archived

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

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


  • Member Statistics

    • Total Members
      131,948
    • 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)

    • There are no registered users currently online

  • 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.