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Really Curious & Really Nosey


Guest BellyTimber

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Guest BellyTimber

(Apologies if it's been covered earlier -- haven't discovered all the back pages yet)

Anyone using the forum pursued a gluten-free lifestyle for 50 yrs like Rose Kennedy?

40?

...etc

Me, about 2 and a quarter but with lots of bungling as I'm dyspraxic - and yes I'm hoping an occupational therapist will advise me how to reorganise my kitchen so I can do the baking & other food preparation better.

(Friends are too shy or uncomprehending to get involved in any of that)

In my old flat which was four times the size I had a good system going but I couldn't "generalise" the skill when I had to move. (Also spent time coughing up blood over that transition)

Anyone that thinks this enquiry is out of order - please say.

Best of wishes all

Michael


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Guest Viola

I've been gluten free since 1989. Although I'm the only one in the household, my husband is not gluten free except in cases where a meal is normally so, such as potatoes, vegies and a non coated meat. Which means of course that I make two meals most of the time.

darlindeb25 Collaborator

i have been gluten-free since july of 2001---my sister is celiac and now my father has been gluten-free since nov and he will be 70 next month--my sis is 46 and i am 49---we probably all have been celiac since young---my sis and i have always had problems and no diagnosis---my dad has always had stomach problems--i remember him taking little pink stomach pills for years and years--lots of us have been celiac for years and just not known it---ya know michael, you can ask anything you want in here, no one has to answer anything they dont want too--otay--deb

mopsie Newbie

I've only been gluten-free 8 months, but my sister has been for roughly 25 years and her son was diagnosed as an infant and he's now 36. That was tough, back then, there was so little info and help available. We've got it good now. :D

Guest BellyTimber

"Hats off" to Viola, and to Mopsie's sister.

It's so good to get the longer view and realise there is a positive life once we're further through this dark confusing phase.

At the same time it's been so heartening reading posts of people who are still at or near the beginning like me, it shows I am far from alone.

Keep the replies rolling anyone that is so inspired to do...

Thanks so much

Michael

WLJOHNSON Newbie

Hi,

I've been gluten free for a long time. I'm 60 years old and have had symptoms of Celiac since the age of 8, however, there was no way to know back then that the reason for my wheezing and asthma was due to what I was eating. That revelation only came by way of visiting numerous doctors and specialists, being hospitalized so many times, spending all of my funds on doctors, treatments, and medicine, pretty much to no avail. Only when I decided to go my own route, which meant eliminating certain foods from my diet (this was in the 70s), did I finally find some relief. I stopped eating all grains, all milk and dairy products, and finally egg whites and yeast. My early warning system (asthma) would notify me within 15 minutes if I had eaten gluten or dairy, and then I would have to deal with the consequences. In the beginning I would go back to those foods once I was feeling better, only to go through the same routine again, until I eventually learned not to cheat, and NEVER to eat the offending foods. Here's how I know that I love myself not to eat those foods--I spent 6 months recently working two jobs, one in an ice cream parlor and one in a bakery. It was great to be able to see those foods as poison for me, and to share about celiac to some of the people who really didn't know much about the disease. Good luck with your journey in this new land. I know you will feel better when you get organized and when you follow a strict but delicious gluten free diet! Best wishes, Welda

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    • SamAlvi
      Hi, thank you for the reply. Unfortunately, no other antibody tests were ordered. I am a 32-year-old male. About two months ago, I ate pancakes and then developed severe diarrhea that lasted the entire day. At night, I became unconscious due to fluid loss and was admitted to the ER, where I received IV fluids. Two days later, I ate bread again and once more developed severe diarrhea. I ended up in the ER again and received IV fluids. In my country, Pakistan, doctors are unfortunately not very thorough, so they treated me for a stomach infection. I visited three or four doctors, including a gastroenterologist, but it seemed like they just wanted to keep me on medications and IV fluids. Eventually, I did some digging myself and started connecting the dots. For years, I’ve had excessive gas buildup and frequent loose stools, but I never paid much attention to it. I also cannot easily digest dairy products. Two years ago, I had a CBC test that showed iron deficiency. My doctor told me to eat more meat and said it was nothing serious. However, for the past five years, I’ve also had severe motion sickness, which I never experienced before. Whenever I get on a bus or in a car, I sometimes lose consciousness for 10–20 seconds and wake up sweaty, and occasionally I feel the need to vomit. After more research on the internet, I came across gluten and celiac disease, so I got two related tests (TTG-IgA & TTG IgG) done along with a stool test and another CBC. The stool test showed weakly positive blood. Ever since eating those pancakes and bread, I’ve had a burning sensation in my gut. My doctor reviewed my tests, he told me to completely stop eating gluten and started me on IV fluids for 20 days, saying that I had severe inflammation in my gut. It has now been two months since I quit gluten, and I’m still not sure whether this is celiac disease or gluten intolerance. I don’t really trust doctors in Pakistan, so I thought I might get some help here.
    • trents
      Welcome to the celiac.com community, @SamAlvi! Were there any other antibody tests ordered? Particularly, was there a "total IGA" test ordered to check for IGA deficiency. When people are IGA deficient, celiac panel IGA test scores, such as the TTG-IGA, are likely not valid. If a total IGA test was not ordered, I would request such to be done. Note: "Total IGA" goes by other names as well. I will include a primer on celiac disease antibody testing which does a good job in covering the nomenclature variations connected with the various tests. Elevated IGG scores can certainly indicate celiac disease but they are more likely than elevated IGA tests to be caused by something else.  
    • GlorietaKaro
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    • lalan45
      You’re not crazy—some people have severe neurological and physical reactions to gluten, not just digestive issues. While testing can be tricky without eating gluten, documenting symptoms and seeing a specialist familiar with atypical celiac or gluten-related disorders can help. Your reactions are real, and it’s valid to be cautious.
    • SamAlvi
      Anti TTG (IgA) 2.430 U/mL Anti TTG (IgG) 288.2 U/mL
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