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Celiac's Not Sticking To The gluten-free Diet

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Posted 30 December 2012 - 08:38 PM

I can see where it is easier for those with symptoms on the bad end of the spectrum to follow the diet; and those with other diseases. I suspected celiac in myself for over a year before I finally got myself tested. I had been told decades ago that stomach aches were normal for me, and I believed that doctor for almost 30 years (dumb eh?)... well, I partially believed him and partially didn't want to face changing my diet. It seems like a daunting thing to do, of course now I know it really isn't so bad.

I too don't have horrible symptoms. Just lots of stomach aches, bloating, migraines and thinning hair. It wasn't debilitating. I stick with the diet because I'm happier when not in pain, because I don't want to show my kids that cheating is okay, and because the other AI diseases I ended up with are and were, such a hassle to treat (surgery and hormones, ugh). Celiac really is one of the better diseases out there when it comes to treating it because the patient has total control; we don't have to constantly fight with doctors to change meds, or prove new symptoms, or undergo really invasive surgeries... We just need education and will power.
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Nicole Posted Image

"Acceptance is the key to happiness."

ITP - 1993
Celiac - June, 2012
Hypothyroid - August, 2012


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Posted 31 December 2012 - 03:28 AM

KMMO320, glad you keep coming here, there is obviously a part of you that is ready to deal with this disease. Lots of us are self diagnosed and have to live with it. Occasionally I wonder if it is really true, and then I give myself a good slap and get on with it.

You said you think you may have a psychological problem. If the people here are not enough to convince you, it may be necessary to find somewhere to sort out your self sabotage. Remember this disease can affect you mentally too. This also means that, perhaps counterintuitivley, once you stop cheating, it will get easier to stick to the diet. But, if you need some help, get some.

The folks here are AMAZING. They will help you every single.day if you need it. They won't support cheating though, they just won't.

One of the worst things this disease.can do is make you feel fearful, different and alone. But you have this forum . Maybe join a local group.

Good luck.
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- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image



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Posted 31 December 2012 - 08:44 AM

...Then, my symptoms aren't as severe as others, so I think, maybe I don't have it then..I almost feel guilty for claiming to have celiac disease when others are very very ill, and I am not.


You mentioned your symptoms not being very severe and thinking that meant you might not really have celiac disease? There are are people who have no symptoms but still have celiac disease. They call it "silent celiac" when that happens. Having silent celiac doesn't mean that damage to the body isn't happening though. Most likely those people would develop symptoms later if they kept eating gluten. It would be pretty impossible not too once the villi are destroyed and malnutrition sets in.

There is also the possibility of NCGI, which they just confirmed exists this year (2012). Celiac testing won't show it, but it can cause similar symptoms. Since it is newly identified, there isn't any info about the long term affects available. But they did identify it as being an immune response in the gut. An immune response in the gut is what causes the damage in celiac disease so it is possible NCGI does gut damage also. Or maybe it is a pre-curser to full blown celiac disease. We just don't know yet.

Here's some reading for you. Maybe something in these threads will help.

Non-celiac wheat sensitivity article

How bad is cheating?
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul



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Posted 31 December 2012 - 06:02 PM

Sounds like a whole lot of people comparing their insides to other people's outsides. It is impossible to
Truly know what another person has going on inside. I choose to use that time and energy on other things. I
also try not to judge others and I can count that towards my 26 Acts of Kindness!
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Posted 31 December 2012 - 06:08 PM

Thanks, everyone.
Like I said, more often than not, I am gluten-free. I will go weeks and weeks of being only gluten-free and fine with it, it is just once in a while I think...maybe I am ok, and eat a bagel, or a cookie. And I sit and wait.

It IS stupid, I know. I should be happy I am not very sick and happy that my reactions are not severe.

I keep coming back because it helps. Thanks, everyone!
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Posted 02 January 2013 - 08:56 AM

Sounds like a whole lot of people comparing their insides to other people's outsides. It is impossible to
Truly know what another person has going on inside. I choose to use that time and energy on other things. I
also try not to judge others and I can count that towards my 26 Acts of Kindness!

Sounds like someone can't tell the difference between judging others and giving advice. We choose to spend time and energy helping people on this forum...not judging them. The OP knows that cheating is bad but comes here to gather strength and uinderstanding. That's what we are here for. That's part of my Acts of Kindness only I don't stop at just 26. :rolleyes:
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Posted 11 January 2013 - 10:34 AM

The ones that really make me mad are the parents who take their kids off the gluten-free diet or let them cheat. Especially the parents who have read all the info and know there is no cure but feed them gluten still!

Oh man, infuriating. We are working so hard to make sure that our daughter gets her health back and can live a normal healthy, gluten-free life. I do think about those kids whose parents aren't willing or able to do the same! The pediatric GI told us that they have problems with symptom-free teenagers deciding that they don't want to do it anymore, and going out with friends to have a pizza or something. I can understand the teenage rebellion, but hope we don't face it in our house! I would think that these would be self-correcting episodes of rebellion -- go off the diet and symptoms reappear.
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9 year old daughter diagnosed celiac November / December 2012
Postive endoscopy / biopsy, positive antibody test, positive genetic test

She's been gluten free since diagnosis. I've been gluten free with her since Jan 2013.



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Posted 13 January 2013 - 08:34 AM

I can honestly say that I've never been tested positive for celiac disease, just IBS-D for over 20 years. However, when I began early last year receiving treatments and testing from a functional medicine provider, all signs pointed to celiac. I had some blood & stool tests done that tested off the charts for gluten intolerance. I was eating tons of gluten, all of the "good stuff", pizza, bread, cereal, cookies, pasta etc. I still ate better than most because I had avoided all processed, fast, greasy, spicy, chocolate and dairy foods for more than 10 yrs. I would get severe cramping pains and diahrrea, sometimes needing ER relief.
He believed I had celiac for a long time and it did consider damage to my intestinal lining, that just took a while to really affect me. Like a previous post stated, just because you have no symptoms currently, eventually when enough damage is done, you will and it will be bad. I'm having a terrible time still, due to cross reactions now to non gluten foods, I've been gluten free for 10 months with no cheating. We are still trying to heal my bad injured leaky gut. If you are diagnosed celiac and you continue to cheat or ignore it, trust me, you will pay later.
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Posted 13 January 2013 - 10:33 AM

It is not kind to stand by and watch (or cheer them on) while a person runs down a road that ends with a sudden cliff. Right?

It is a good thing to cheer them on down a road which leads to some advantage. Like the good health road.
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Posted 13 January 2013 - 12:41 PM

Just a note - my teens don't cheat because they have paid dearly with accidental glutenings - the son that went gluten-free shortly after me did intentionally eat gluten a few times during high school - with time his reactions became so violent it was a natural deterent. His brother's reactions are not as powerful so he orders gluten-free items safely without being quite as careful - still we have seen no "rebelious" behavior concerning gluten.
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Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS


ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)

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