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
      132,138
    • Most Online (within 30 mins)
      7,748
    Jamy
    Newest Member
    Jamy
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Sarah Grace
      Headaches / Migraines and Hypoglycaemia

      By Sarah Grace · Posted

      Dear Kitty Since March I have been following your recommendations regarding vitamins to assist with various issues that I have been experiencing.  To recap, I am aged 68 and was late diagnosed with Celiac about 12 years ago.  I had been experiencing terrible early morning headaches which I had self diagnosed as hypoglycaemia.  I also mentioned that I had issues with insomnia, vertigo and brain fog.   It's now one year since I started on the Benfotiamine 600 mg/day.  I am still experiencing the hypoglycaemia and it's not really possible to say for sure whether the Benfotiamine is helpful.  In March this year, I added B-Complex Thiamine Hydrochloride and Magnesium L-Threonate on a daily basis, and I am now confident to report that the insomnia and vertigo and brain fog have all improved!!  So, very many thanks for your very helpful advice. I am now less confident that the early morning headaches are caused by hypoglycaemia, as even foods with a zero a GI rating (cheese, nuts, etc) can cause really server headaches, which sometimes require migraine medication in order to get rid off.  If you are able to suggest any other treatment I would definitely give it a try, as these headaches are a terrible burden.  Doctors in the UK have very limited knowledge concerning dietary issues, and I do not know how to get reliable advice from them. Best regards,
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
×
×
  • 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.