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Staying On The Diet


paradise2004

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paradise2004 Rookie

I have known about my Celiac disease for about five years, and probably had it for at least 8. I constantly had stomach aches and was exhausted. Since my diagnosis I have gone on and off the diet. I can feel the consequences but somehow I still eat gluten. Compared to most, my reactions aren't that bad. I get a bad stomach ache and feel exhausted. Is there anyone that can convince me to stay on this program? I know what may happen: It will ruin my intestine and may give me stomach cancer, I don't know if I really understand it though. Thanks.


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kvogt Rookie

Anyone in your family have lupus? It killed my grandmother. I figure it could kill me, too. Anyone have rhumatoid arthritis? That would be a nasty thing to get. I've got a big ugly, red, itchy patch of eczema on my leg - another autoimmune disease - that I would have rather not gotten. Probably wouldn't have it if I had been diagnosed in time. You may have light symptoms now, but as you get older and your immune system gets more tired, you will probably have more trouble.

Is this the sort of response you were looking for?

tarnalberry Community Regular

"Is there anyone that can convince me to stay on this program?"

No. Until you determine if your quality and length of life is more important than the taste of wheat based products, you won't stick with the diet. And I don't mean that in a rude or judgemental way; it's possible that someone finds bagels and wheat pasta so important to their life that it is worthwhile, in overall happiness over the span of their life, to deal with whatever level of symptoms they have an risk dieing earlier. I'd disagree, of course, but that wouldn't mean it wasn't true for them. ;-) (My moral philosophy is ethical egoism... this take on it comes from that.)

Some reasons to consider:

* Eating gluten when you have gluten intolerance will:

- Give you intestinal symptoms (even if they are mild)

- Give you other symptoms (mental and physical, and again they may be mild)

- Lower your quality of life, by an amount that you can't determine until you try being gluten-free for a while, and by an amount that may vary over the course of your life

- Increase your risk of dieing early

- Increase your risk of cancer and the cost, symptoms and medical treatments (many of which are uncomfortable) along with that

- Increase your risk of diabetes and the cost, symptoms and medical treatments (many of which are unpleasant) along with that

- Increase your risk of other autoimmune diseases and the cost, symptoms and medical treatments (many of which aren't fun) along with that

* Avoiding gluten, while initially difficult, is a learned skill that becomes easier with time.

* Taking full responsibility for your health and the work that goes into maintaining your health is representative of other healthy choices to be made in your life and is practice for all of those other decisions.

Those are just a couple things that come to mind.

wclemens Newbie

paradise2004,

Hi. Glad you're here. In 1977 I learned that my sister, brother, and I were the only ones on my mother's side of the family to not have Polycystic Kidney Disease, an hereditary, terminal kidney disease. I watched my mother, grandmother, two aunts, and two cousins die of the disease. Imagine how ecstatic my sister, brother, and I were to realize that we had been given a life without the threat of this terminal illness (my mother died at 48).

Later we watched as our father died of colon cancer. Oh what we would give to have our mother and father here with us now, as we, along with our children and grandchildren experience life.

Celiac Disease has tried to bring us all down. It has caused physical illness, depression, doubts about our sanity, conflict, anger, irritation, frustration, and pain. Suffering is no stranger to us. Why would we give in to it, and cause our early demise, by eating foods which we know are poison for us? My dad always told me, "Don't be a quitter!" I'd be giving up, just quitting, if I let grains, milk, dairy, egg whites or yeast pass these ruby red lips--lips which have so much good and so much positive to share with others. I just won't do it. I will stand up and fight! I will take each day and make the most of it, giving my best. I will offer hope and inspiration to others, who may not know what to do. I will thank my Creator that He spared me from an hereditary kidney disease and colon cancer, and that He gave me the opportunity to live my dreams.

We care about you, and we really want you to join with us in this fight. Together we can change the world. We can make a difference. We can experience victory, joy, and jubilation. Yay! Go team, go! Welda

flagbabyds Collaborator

It's really up to you and you have to decide if you want to die when you are 60 or when you are 100? I choose 100 but it is really up to you. If you want to be throwing up and being sick all the time then that is your choice, but if you want to be happy and healthy, stay on the diet.

burdee Enthusiast

OK, I'll add my 2 cents' worth: When you 'cheat', whom are you cheating? Only yourself. ;) When you learn that touching a hot burner on a stove will cause pain and damage your body, do you intentionally put your hand on the hot burner? Would you 'cheat' the 'rule against touching the hot burner' if you did?

Perhaps the 'cheating' notion comes from calling the gluten free eating program a 'diet'. Most diets deprive us of foods we like and force us to eat foods we dislike. That's not necessarily so with the gluten-free approach. You can find GREAT gluten-free substitutes for many gluten containing breads, pastries, pastas, etc. You can find gluten-free brands for many condiments and gluten-free versions of many other foods. Focus on SUBSTITUTION, not deprivation.

You may discover many great foods you never tried, because you were stuck in a gluten rut. I certainly was. :( I hardly ever tried other grains or starches, because I didn't like white rice or white russet potatoes, but I ate a LOT of gluten laden breads. I seldom tried other ethnic foods. Now I love all kinds of rice, rice noodles, quinoa, amaranth, many varieties of nuts and nut butters, all kinds of beans, squashes, and any potato except russet. I love trying authentic Mexican and Thai restaurants which have lots of gluten-free choices. Even though I must avoid dairy and soy, as well as gluten, I now have soooo many more food choices, because I was forced to look beyond my old favorites. ;)

BURDEE

darlindeb25 Collaborator
:D i tell people that i am not on a diet--it's a way of life and gluten-free is a way of life--when you are diabetic and have to change the way you eat, its not called a diet--same thing--its the way we live, no ifs, ands, or buts--i tell people i do not have a wheat allergy, but that i can not tolerate any wheat in my system and then i add or barley, rye, and oats and they dont understand, its up to us to educate people--lets be teachers----deb :P

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darlindeb25 Collaborator
;) ps---we cant look at gluten-free as a life sentence--its---WOW, I HAVE MY LIFE BACK--YEHA-------deb :D

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    • RMJ
      This may be the problem. Every time you eat gluten it is like giving a booster shot to your immune system, telling it to react and produce antibodies again.
    • asaT
      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin (3) and low vitamin D (10). I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get this test? So I did quit gluten and had the biopsy. It was negative for celiacs. I continued gluten free with iron supps and my ferritin came back up to a reasonable, but not great level of around 30-35.  Could there be something else going on? Is there any reason why my antibodies would be high (>80) with a negative biopsy? could me intestines have healed that quickly (3 months)?  I'm having a hard time staying gluten free because I am asymptomatic and i'm wondering about that biopsy. I do have the celiacs gene, and all of the antibody tests have always come back high. I recently had them tested again. Still very high. I am gluten free mostly, but not totally. I will occasionally eat something with gluten, but try to keep to a minimum. It's really hard when the immediate consequences are nil.  with high antibodies, the gene, but a negative biopsy (after 3 months strict gluten-free), do i really have celiacs? please say no. lol. i think i know the answer.  Asa
    • nanny marley
      I have had a long year of testing unfortunately still not diagnosed , although one thing they definitely agree I'm gluten intolerant, the thing for me I have severe back troubles they wouldnt perform the tests and I couldn't have a full MRI because I'm allergic to the solution , we tryed believe me  I tryed lol , another was to have another blood test after consuming gluten but it makes me so bad I tryed it for only a week, and because I have a trapped sciatic nerve when I get bad bowels it sets that off terribly so I just take it on myself now , I eat a gluten free diet , I'm the best I've ever been , and if I slip I know it so for me i have my own diagnosis  and I act accordingly, sometimes it's not so straight forward for some of us , for the first time in years I can plan to go out , and I have been absorbing my food better , running to the toilet has become occasionally now instead of all the time , i hope you find a solution 🤗
    • asaT
      I was undiagnosed for decades. My ferritin when checked in 2003 was 3. It never went above 10 in the next 20 years. I was just told to "take iron". I finally requested the TTgIgA test in 2023 when I was well and truly done with the chronic fatigue and feeling awful. My numbers were off the charts on the whole panel.  they offered me an endoscopic biopsy 3 months later, but that i would need to continue eating gluten for it to be accurate. so i quit eating gluten and my intestine had healed by the time i had the biopsy (i'm guessing??). Why else would my TTgIgA be so high if not celiacs? Anyway, your ferritin will rise as your intestine heals and take HEME iron (brand 4 arrows). I took 20mg of this with vitamin c and lactoferrin and my ferritin went up, now sits around 35.  you will feel dramatically better getting your ferritin up, and you can do it orally with the right supplements. I wouldn't get an infusion, you will get as good or better results taking heme iron/vc/lf.  
    • par18
      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test" itself. If you were gluten-free and got tested, you more than likely would test "true" negative or just negative. This means that the gluten-free diet is working and no anti-bodies should be present. I know it sounds confusing and if you don't agree feel free to respond. 
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