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First diagnosis @ 83 - I need advice whether to be or not to be Gluten Free for life.


SirMakem

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Rogol72 Collaborator
  On 2/15/2022 at 9:47 PM, Russ314 said:

And they would be correct. I had my first decent beer for many months at the weekend. Local brewery makes a gluten-free ale that actually tastes like ale - Allendale Hop On. Nectar of the Gods.

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"Nectar of the Gods" ... sounds mouth wateringly good! Would love to be able to drink a pint of creamy Guinness again, alas only in my dreams.


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Russ H Community Regular
  On 2/15/2022 at 10:45 PM, SirMakem said:

Name of pub please. I am going up north later for a wedding.

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It was the Cumberland Hotel in Alston. They don't always have it on though, and I drank the last of it. Probably worth phoning ahead to be sure. Quite a few places sell Allendale Brewery ale but you would need to phone to see what they stock.

http://www.allendalebrewery.com/where-to-drink

Russ H Community Regular
  On 2/15/2022 at 11:52 PM, Rogol72 said:

"Nectar of the Gods" ... sounds mouth wateringly good! Would love to be able to drink a pint of creamy Guinness again, alas only in my dreams.

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Maybe not Guinness, but I have seen a few gluten-free stouts available. It would be interesting to have the gluten content of Guinness measured in a proper lab. Someone tested it and got a negative, although I would want stronger evidence before I tried it.

https://smartgurlsolutions.com/2018/04/16/guinness-stout/

 

  • 3 months later...
Wheatwacked Veteran
  On 5/31/2022 at 12:40 PM, matina336 said:

shortness of breath, dry cough, chest tightness gradually disappeared.

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Quitting smoking did not help but the GFD did.

  • 1 month later...
ButWhatCanIEat Explorer

You're 83? Well I guess it's a choice about your quality of life. I wasn't dxed until middle age and the thought of giving up delicious food I am good at cooking seemed unbearable. But I felt so much better physically after going gluten free I was shocked. I felt twenty years younger. Try it for a few weeks and see if it is worth it to you.

SirMakem Rookie
  On 7/13/2022 at 11:49 PM, ButWhatCanIEat said:

You're 83? Well I guess it's a choice about your quality of life. I wasn't dxed until middle age and the thought of giving up delicious food I am good at cooking seemed unbearable. But I felt so much better physically after going gluten free I was shocked. I felt twenty years younger. Try it for a few weeks and see if it is worth it to you.

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Thank you for your input. My gluten free life was/is crap. I will now eat whatever is convenient and if it is gluten free then all well and good. However, if it is not then so be it.

For example, my wife can bake very edible gluten free cake and cook some gluten free meals but as soon as we go away from home I become like being a person with a weak bladder, always looking for a toilet, in my case, gluten free restaurants for main meals and for lunches.

I go away tomorrow from SE UK to the NE of UK and Scotland and I will eat wherever I need to stop, I know of one restaurant in the NE where I can take my own gluten free spaghetti and they will cook it and add the sauce. Where I live every restaurant questioned said, "no" to my unopened packet of spaghetti because of possible contamination of their food!

I travel abroad widely normally and will continue to do so, letting gluten free take a back seat to my enjoyment of the remainder of my life. To date, having stopped a total gluten free food for some few weeks now and felt no effect, I feel my life has got back on an even keel. If I have adverse indications then I will have to reconsider and perhaps become a gluten free recluse, but not yet or maybe never.

trents Grand Master
  On 7/14/2022 at 5:21 PM, SirMakem said:

Thank you for your input. My gluten free life was/is crap. I will now eat whatever is convenient and if it is gluten free then all well and good. However, if it is not then so be it.

For example, my wife can bake very edible gluten free cake and cook some gluten free meals but as soon as we go away from home I become like being a person with a weak bladder, always looking for a toilet, in my case, gluten free restaurants for main meals and for lunches.

I go away tomorrow from SE UK to the NE of UK and Scotland and I will eat wherever I need to stop, I know of one restaurant in the NE where I can take my own gluten free spaghetti and they will cook it and add the sauce. Where I live every restaurant questioned said, "no" to my unopened packet of spaghetti because of possible contamination of their food!

I travel abroad widely normally and will continue to do so, letting gluten free take a back seat to my enjoyment of the remainder of my life. To date, having stopped a total gluten free food for some few weeks now and felt no effect, I feel my life has got back on an even keel. If I have adverse indications then I will have to reconsider and perhaps become a gluten free recluse, but not yet or maybe never.

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Were you actually diagnosed with celiac disease or do you have Non Celiac Gluten Sensitivity (NCGS)?


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SirMakem Rookie
  On 7/14/2022 at 5:39 PM, trents said:

Were you actually diagnosed with celiac disease or do you have Non Celiac Gluten Sensitivity (NCGS)?

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I was diagnosed with celiac disease by blood test and endoscope.

trents Grand Master

I just want to point out that apparent lack of symptoms does not necessarily equate with no damage being done to the villi of your small bowel. There are many who have a "silent" expression of celiac disease until the damage gets to a certain point. 

SirMakem Rookie
  On 7/14/2022 at 6:19 PM, trents said:

I just want to point out that apparent lack of symptoms does not necessarily equate with no damage being done to the villi of your small bowel. There are many who have a "silent" expression of celiac disease until the damage gets to a certain point. 

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Well, I got to 82 years without symptoms and the disease was only discovered via a blood test for another problem. If I had not had that blood test then I would have had a happy life and died without ever knowing. In those 82 years, the damage was done and cannot be reversed in the time left. in my opinion.

Scott Adams Grand Master

Since you travel a lot and will eat gluten if you have to in those situations, perhaps consider the GliadinX AN-PEP supplement (they advertise here), as all studies I've seen on it indicate that it would be much better taking a few of them in such circumstances than not.

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    • trents
      The "IgA 47-310 normal range" = is the total IGA test I mentioned in an earlier test. It goes by a number of names. He is not IGA deficient.
    • knitty kitty
      Doctors don't usually test the levels of all the B vitamins.  B12 is frequently the only one checked.   Ask for an Erythrocyte transketolase test to check Thiamine Vitamin B 1  levels.  The eight B vitamins all work together, so they should all be supplemented.  Additional thiamine in the form Benfotiamine can be taken.  
    • knitty kitty
      No.  The damage done to the lining of the intestines is caused by the autoimmune response of Celiac disease.   People who have been off of gluten for an extended period may take longer to mount an autoimmune response.  Twelve days of gluten after two years off probably wasn't enough time and not sufficient gluten.  
    • LizzieF
      @trents @knitty kitty would NCGS show some celiac in biopsy?     
    • LizzieF
      @trents blood tests were IgA 47-310 normal range - mine was 120; TTG <15.0 antibody not detected, mine was <1.0.
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