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Celiacs Who Can't Stop Cheating on the Gluten-Free Diet

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Amy Leger

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I was doing some research tonight when I stumbled upon what I consider a most disturbing celiac-related confession on a website that appears to highlight anonymous revelations. The title was I’m Dying and I’m 19…

“I have Celiac Disease and even though I know it’s killing me I still eat and use products containing wheat and flour…I don’t know how to stop doing this to myself and apparently death isn’t good enough reason for me to quit : / I have also recently been diagnosed with cancer and had surgery to remove it and my appendix where it was found.” — Anonymous on experienceproject.com

The skeptical news person in me questions how realistic the preceding “confession” is, but whether it’s real or not, I believe the idea of non-adherence to the gluten-free diet is a real issue and deserves some space on this blog. So allow me to use it as a launching point for a serious discussion.

Sticking and not-sticking with the gluten-free diet

Just last month on Celiac.com a woman started a thread which said on occasion she just couldn’t “stop binging on gluten”. Then the outcry of support came from readers: concerns about depression, nutritional deficiencies, and maybe an eating disorder. The woman said she’d get help and turn things around - and that she appreciated the support.

Even knowing that infertility, osteoporosis, cancer and more can all be a result of untreated celiac disease, what causes a celiac to turn away from the very diet that could prevent all of these ailments? Is it just because someone told them they can’t have it -now they want it more? Is it because they crave certain favorites so much they just feel they cannot deny themselves? Is it pressure to fit in, in our processed-food culture?

One survey conducted two years ago and printed in Medscape showed that the gluten-free diet is is followed in only 50-75% of patients. The reasons: “unclear food labeling, low levels of knowledge about the diet, reliance on processed foods and the cost and availability of gluten-free foods.”

“Only 2 factors were associated with worse adherence, concern that cost made a gluten-free diet more difficult to follow and the admission that changes in mood and stress levels affected the ability to adequately follow a gluten-free diet.” –Dr. Daniel Leffler, MD Beth Israel Deaconess Medical Center, Boston, MA

Increasing Adherence to Gluten-free Diet

So how do you fix this problem? One thing to do, according to the aforementioned research, is to join a support group. This helps increase your knowledge base about celiac and the gluten-free diet, which will help you sort through any unclear labeling and reliance on processed foods -which were mentioned as problems earlier. I know it really helped me shortly after Emma’s diagnosis.

More recently a few studies have other, what could be considered more-clinical, suggestions. One study profiled on my site last month recommended doctors begin using a 7 question survey to determine gluten adherence, and then work with the patient to increase adherence.

Another study I found on the National Institutes for Health website recommended trained nutritionist evaluations as the best to help people adhere to the gluten free diet.

With any luck, the person who posted the “confession” will hopefully get some help and begin to follow the diet. And we all wish him or her the best as they go through the process of an early cancer diagnosis.

If you have celiac disease and are struggling with staying on the diet, I highly recommend getting involved in a support group or a celiac organization of some kind. Knowing you’re not alone really can help your psyche. If you think it goes deeper than that, consult your physician about other steps you can take to help you help yourself and get better!

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Guest Cynthia

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Hi Amy,

I've come across your blogs on adherence, and thought it might be interesting to have a look at an article reporting adherence levels (to the gluten free diet) of diagnosed celiacs.

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Guest Lionel Mugema

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There are no groups, no associations here. What can we do?

I live in Kampala (Uganda), I have celiac disease, I was diagnosed in Belgium when I was about 7 years. I have tried to stick to gluten-free diet. However, the risk of contamination and temptation of cheating the diet are extremely high. There is no choice for celiacs in Kampala.....or maybe I am the only one.

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I know this sounds unbelievable but its no different with people that smoke & know the outcome or people like me that are morbidly obese & have a gluten intolerance & cheat all the time.

 

Plus my gluten intolerance affects my peripheral neuropathy & I live in constant pain from what I eat. It may sound crazy to know this can kill you but it never stops people with addictions from stopping.

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Guest Chris S

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I was a diagnosed Ceiliac at the age of one, and stuck to a strict diet till the age of 16.. I never realized the dangers very recently after putting on weight and not suffering from any of the other noticeable symptoms (until now) I am 40 in April and only recently started to suffer from dermatitis herpetiformis which is horrible. In fairness it has woken me up and am determined to stick to a gluten free diet from now. I will say to anyone reading this, it may seem like you are not suffering, but it will catch up with you.. I am in the process of changing my life back to a gluten free diet. I will update you as I go on.

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Hello

I am living in Jinja Uganda at the moment and I agree it is difficult but if you have access to an oven you can make bread using the copious amount of gluten free flour available. I do not have a oven so I make pancakes with the flour from the baby porridge or rice chapati. Soy/rice or Soy millet is fine to eat. Also if you ever come to Jinja. There is a nice cafe called Indulge that has gluten free crackers, licorice, brownies and chocolate. I hope this helps.

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Guest clare hunter

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I was diagnosed 3 years ago with coeliac and ulcerative colitis, a started the gluten free diet but with having family it made it hard to follow am worried now with me not sticking to the diet !!

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Debbie,

 

I think you are comparing apples and oranges. I'm sure you are aware people who smoke don't need to smoke to live, correct?

 

However, everyone must eat to live. Big difference.

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Guest Aislinn

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I've had coeliac since I was diagnosed under 1 year old. I'm now 39 years old and I yes, I do cheat from time to time. It is an extremely difficult diet to keep to when you are growing up and everyone else is eating pizza and cake at parties. I was often found hiding behind curtains with the giveaway of crumbs on the ground below. Maybe I have an addictive personality & they do say that eating gluten in a coeliac can increase saliva production and make you crave more.

 

But until you are coeliac you will never know quite what it is like to not be able to have what everyone else does. Now I am savvy about food, a good cook and eat a range of foods that I like which hugely make up for the fact I can't eat the gluten foods, for example sushi, taco shells (gluten-free) with chilli, baked pots, rice & vegetable pasta which is by far the best. But because I'm adventurous I want to try pitta breads stuffed with salad & however much I try & get ones that work they always fall apart and I don't get the same experience as everyone else. & I would still love to see ready made gluten-free pastry so I could make a pastry dish with mozzarella and spinach on top.

 

I got out and want to get something healthy, it is either hugely expensive or there isn't anything, the other day i opted for chips but I would rather not have. Look, the list goes on. I know I've had this condition for 38 years and I can still find myself eating the bread next to the soup if I haven't been ultra organised and brought something to go with this. I know I should eat before I go out but that doesn't always work.

 

Finally, I have struggled with gluten-free bread since the beginning, those drying breads that used to be in circular tins and make some sort of paste in your mouth so you had to drink water to swallow. The new breads on the market are much much better but there are substances added which upset my stomach. I have found one I like currently, a new Glutafin brown bread, fresh & it even has seeds in it & is doesn't land in your tummy like a brick.

 

I've given up gluten-free biscuits because they are so high in fat content I might as well eat a chocolate bar and gain the pounds than one biscuit.

 

For me it is a hard diet & I know I should be grateful I don't have something much harder to follow or have severe allergic reactions too but I can't help crying out like I did when I was a kid, I want to eat what everyone else does! & I don't mind the feeling of always wanting to sleep just for that occasional cheat!

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Guest Kaitlyn

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I just wanted to thank you for writing this I was diagnosed with celiac disease February 10 of 2011 and I followed my diet until I had my disease under control and now that it is I have gone back to eating whatever I want and it is hard but after reading this it has scared me knowing what can happen that I am going to follow my diet again. Since I have gone back to eating whatever my stomach is in a lot of pain like it was before. I thank you for helping me.

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I think what debbie is trying to say is that food like smoking or drinking can be addictive, I know that by eating cakes and sweet foods that are full of wheat that I am doing long term damage but the urge (very much like an addict) is hard to curb, I was diagnosed 5 years ago, its very hard to change a habit of a lifetime.

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Although a lot of the coeliac foods like pasta are very good there are no replacements for rolls or bread, I have been buying and baking my own for 5 years now and just cant match bread made with wheat, I feel so guilty when I cheat my diet but after spending 25 years of eating what I liked it was hard to cut out my Favorite things with no alternative! I think for a lot of people, me included, the long term effects of eating wheat and gluten are not yet taking their toll on our bodies or affecting our lives so until then I feel a lot of people will still cheat, there is too much temptation out there to do so and not enough negatives to stop us from wanting too.

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Guest audrey

Posted

Udi's brand bread isn't bad. My son likes it and it is better than any we have tried. He has a hard time not getting into wheat too. I agree that until it hurts their body it is hard for them to make the connection and go gluten-free.

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    Sources:
    1. Toft M, Dietrichs E. Aggravated stuttering following subthalamic deep brain stimulation in Parkinson’s disease--two cases. BMC Neurol. 2011 Apr 8;11:44.
    2. Tani T, Sakai Y. Stuttering after right cerebellar infarction: a case study. J Fluency Disord. 2010 Jun;35(2):141-5. Epub 2010 Mar 15.
    3. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    4. Jäncke L, Hänggi J, Steinmetz H. Morphological brain differences between adult stutterers and non-stutterers. BMC Neurol. 2004 Dec 10;4(1):23.
    5. Kell CA, Neumann K, von Kriegstein K, Posenenske C, von Gudenberg AW, Euler H, Giraud AL. How the brain repairs stuttering. Brain. 2009 Oct;132(Pt 10):2747-60. Epub 2009 Aug 26.
    6. Galantucci S, Tartaglia MC, Wilson SM, Henry ML, Filippi M, Agosta F, Dronkers NF, Henry RG, Ogar JM, Miller BL, Gorno-Tempini ML. White matter damage in primary progressive aphasias: a diffusion tensor tractography study. Brain. 2011 Jun 11.
    7. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    8. [No authors listed] Case records of the Massachusetts General Hospital. Weekly clinicopathological exercises. Case 43-1988. A 52-year-old man with persistent watery diarrhea and aphasia. N Engl J Med. 1988 Oct 27;319(17):1139-48
    9. Molteni N, Bardella MT, Baldassarri AR, Bianchi PA. Celiac disease associated with epilepsy and intracranial calcifications: report of two patients. Am J Gastroenterol. 1988 Sep;83(9):992-4.
    10. http://ezinearticles.com/?Food-Allergy-and-Stuttering-Link&id=1235725 
    11. http://www.craig.copperleife.com/health/stuttering_allergies.htm 
    12. https://www.celiac.com/forums/topic/73362-any-help-is-appreciated/
    13. Ford RP. The gluten syndrome: a neurological disease. Med Hypotheses. 2009 Sep;73(3):438-40. Epub 2009 Apr 29.
    14. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. Does cryptic gluten sensitivity play a part in neurological illness? Lancet. 1996 Feb 10;347(8998):369-71.

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