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Celiac's Not Sticking To The gluten-free Diet
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40 posts in this topic

And it is seemingly insignificant, I know, but since I am on a ranting roll...what the heck!

Um,.....it is "celiacs" (plural form ) ...not "celiac's.".... (possessive form)

SO sorry, but l see this mistake all the time and I had to get that out of my English Professor system.

With all due respect, tennisman. :) Please, please ..... do not be mad at me? :lol:

I am thinking....perhaps this was just a typo.?

Whew!.....thanks, I feel so much better.

Big hugs to all! XX

I agree. I also see the mistake where people say they have celiacs disease. No, they have celiac disease. There are celiacs & they have celiac disease they do not have celiacs disease.

Sorry, my rant over.

Big kisses to all.

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YOU HAVE CELIAC ! and Yes, if you cheat, SORRY but you are not very smart. There, I said it. So, STOP IT!!!

Don't apologize, I need to hear it. It is a huge thing to wrap my head around, and no it is not a burden. I actually have come to enjoy my UDIs gluten-free bagels and bread, I even found pasta I like. For the most part, my husband is supportive, but once in a while he will say something like, "its the newest thing" and "Drs dont really know what the reason is, so they say gluten" ANd then I hear it from some cooks at work, that is the "fad" and I start to doubt myself, even though I know better.

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.

It's a mind thing that I need to get over. The proof is the proof. I guess I dont want to admit that anything is "wrong" with me.

my cheats have been fewer and farther between. I just need to nut up and not do it again. I dont consider it cheating, its more like testing. But I never really thought of the damage one time can do.

That is why I keep coming here even when I think I dont need the support.

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Being in denial is not helping you, hon. You already know what damage can be done. If not, READ about celiac disease and quit the malarkey!

There are many complications of untreated celiac.

"Untreated " means undiagnosed OR not following a gluten free diet.

http://celiacdisease...mplications.htm

I talk privately with 2 lovely women on here who are battling cancer as a result of long unDxed celiac.

They struggle to live and stay positive! I had major complications of celiac disease --as have many others---and am grateful my 6 month repeat mammograms and biopsies for the last 15 years come back negative after removal of a mass. I am sorry I had miscarriages and no children. I lost years of my life to this disease and I work to regain my muscles....Should I go on?

We could tell you horror story after horror story, but it is useless if you refuse to understand that celiac is a life-threatening disease

You're no dummy, hon.! .so stop acting like one. :)

Your choice. Your life. Sorry for the" lecture", but I cannot help but think you need a wake up call.

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Listen to Irish. Everything she says is only said with the the love of someone who wants to keep someone else from suffering as so many others have. So simple, decide that the last time is the last time. Only you can be your advocate. Choose health. We'll all be here if you have a moment of weakness, come to us before you cave. Don't wait until it is too late.

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Well said Adalaide!

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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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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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...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.

...

Hi KMMO,

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

http://www.celiac.com/articles/23033/1/Non-Celiac-Wheat-Sensitivity-It-Exists/Page1.html

How bad is cheating?

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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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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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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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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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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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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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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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    • I found when I went gluten free I started eating more dairy and that gave me worse stomach aches and bloating than the gluten did. So now I have to avoid gluten and dairy.  Maybe you have a similar problem with something you are eating.  I hope you feel better soon.  
    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
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