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Can Someone With Experience Explain...

mario

By mario
in Coping with Celiac Disease

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mario Explorer
mario
Posted

I mean I'm all new at this been on the diet for one week now and, can feel the diference having the strenth to go back and, play my drums with my band, really feels great again..

But my question is after six months of healing will I be able to have a small cookie like everyone else will it re-damage the intestinal villi all over again or, will it be a slight damage like barely noticable...can I sometimes cheat like at parties like once a year or will i go back to step one like when i was diagnosed...Someone with experience only can answer me this one question.

Thanks.. :(

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gf4life Enthusiast
gf4life
Posted

Hi Mario,

Sorry to be the one to tell you this, but you just need to find (or make) your own cookies! No cheating, or you just cause damage all over again. I believe it is something like a gram(or maybe less) of gluten a day causes damage. Not to mention, that most people experience horrible pain and symptoms once being gluten-free for a while. Your body becomes ultra sensitive to the gluten, because it likes being gluten free. So when you want to cheat at parties, even once a year, you may very well suffer for it for weeks afterwards. Now you will have to be the judge of whether it is worth it or not, but most people will agree it is not worth it. You will start to find the gluten-free diet is not as hard after a while and being gluten-free will become second nature. But it is very normal to feel sorry for yourself every once in a while and grieve for your loss of freedom to eat whatever you feel like. Just don't let it keep you down. You will eventually be healthier than you probably ever remember feeling in your life, and for that you should be very happy! :D

Gluten intolerance and the gluten free diet can make us all feel a full range of emotions. These are just a few of them.

:mellow::huh::o:D:rolleyes:<_<:):angry::(:unsure::wacko::blink:

So just go easy on yourself and you will find it will not be so hard down the line.

God bless,

Mariann

mario Explorer
mario
Posted
  • Author

Thanks mariann..I'll take your advice, and, stick to the diet, as it is well worth it in the long run...I can always buy my gluten free cookies and, stuff my face once a week with a big coffee...hehhe

Thank you so much..

xox :blink:

flagbabyds Collaborator
flagbabyds
Posted

Never evr cheat on the diet, it is definetly not worth it. Everytime you are eating gluten you are making your self more and more prone to stomach cancer, and you don't want that

remember stick to the diet it is worth it

mario Explorer
mario
Posted
  • Author

Thanks baby.. :blink:

JsBaby-G Newbie
JsBaby-G
Posted

Mario,

I know you have gotten the replies that I will give but believe I am overly qualified to give it. I ignored the diet for a year, thinking really how bad can the damage be. I wanted to eat pizza with my friends and have a normal birthday cake. I was getting myself in trouble. I ended up in the hospital with a total atrophy of my small intestine (it wasn't working at all) and was told that if I don't gluten free I run the risk of getting cancer and having irreversable damage elsewhere in my body!! Trust me it's not worth it!! I hope you heed this advice from someone whose been through it all!! :P

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    • 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
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    • 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 😅
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      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.
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      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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