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    Do you have questions about celiac disease or the gluten-free diet?

Oxx

I can't deal mentally with the idea of not eating gluten, so I keep bingin.

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Last November I was diagnosed with Celiac disease. Ever since I haven't been able to remain gluten-free for more than two weeks. I always make excuses and tell myself that I will start "tomorrow." Before being diagnosed, I thought I was gluten intolerant for over a year. I never visited a doctor or anything, I just had a horrible skin rash every time I ate gluten plus stomach pains and other symptoms so I made assumptions. The thing is,  when I thought I was gluten intolerant I had no trouble being gluten-free because I thought it was only a temporary or superficial thing. Like it was ok to get sick every once in a while if the consequence was only a skin rash and symptoms for some hours or a day. I ate almost fully gluten-free for the past year, except for special occasions when I made the decision to indulge. As many of you all know, it is mentally very difficult to accept that you have to restrict yourself from foods you love forever. I am Mexican and food is a central part of our life and family traditions, making it even more difficult. To make matters worse, my family owns a bakery that is next to my house so the kitchen is constantly filled with gluten treats, cakes, cookies, everything. But when I thought I was gluten intolerant, I had absolutely no trouble restricting myself from all the foods that were around my house. I also developed other food sensitivities recently: corn, legumes, most nuts, soy, etc. I also feel discomfort when eating gluten-free processed foods, perhaps because I haven't complied with the gluten-free diet for a long time. 

I most definitely understand how destructive gluten can be for a celiac. I know that by eating gluten I am damaging my body and health. It is not physically difficult to abstain from gluten, I am having trouble adjusting mentally and socially. I have read all the scary posts about what can happen if I don't follow a gluten-free diet, so I am not posting this so I can be motivated by scare tactics. I am posting this because I am honestly desperate. I feel physically terrible after eating gluten, but it is not enough to make me stop. In my mind, I justify myself by thinking that  I should eat X food one last time before actually starting my diet.  It is mindblowing to me that even if I know what can happen to my body, I just keep binging on gluten. I believe that a huge reason for this is that I feel misunderstood. I have never met another celiac in my life, so I don't really have anyone that actually understands how difficult it can be to change your lifestyle permanently. The advice I constantly get from my friends is "just stop because it makes you sick," which is not very helpful. 

 I really think that I need to talk with actual people that are also going through this or that have successfully transitioned to a gluten-free lifestyle postdiagnosis. I figured this forum was a good place to start, but I am new here and don't really know the "social etiquette" around here. I would love to connect with other celiacs and hear about how you managed to go gluten-free. What resources where helpful? Do you have any helpful tips?

 

Thanks for reading! 

Edited by Oxx

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Half my family is also hispanic.....worse part is I did not get diagnosed til my immune system got other issues....including a extreme allergy to corn...yeah I wish I had changed earlier....I will forever never be able to have my grandmothers tamales, and many other dishes...>.< I did find a way to make enchiladas with almond flour tortillas but the price makes me not do it. I turned to the positive aspect of it. I was a good cook, I love food, and so I started converting and remaking everything in gluten free/corn free ways. I even started a small gluten free bakery. Heck I also got another AI disease due to celiac called Ulcerative Colitis that will not let me consume starches or sugars...(yeah there went beans) Again I adjusted my life and found a new cooking niche for diabetics and ketogenic dieters.....huge hit actually doing grain free baking. I have since perfected making grain free rolls, bread,s cakes, etc.

I got to admit the worse part is my parents could not do the transition....I kept on getting made sick by my family cooking with gluten foods in the house...I had to move out to my own dedicated gluten/corn free house...I have other allergies and intolerance issues but gluten and corn are hyper sensitive and honestly can not even risk touching foods with these.

If you want to reach out this is a great place, I started my own blog here with monthly highlights to let me vent, I started a recipe blog, I spend much of my time looking and helping people here. I have even composed comprehensive list on gluten free foods. This is a bit of family away from family, we have many different specialist in our group as well who can help you navigate this diet and provide emotional support....PS  I am a bit broke, between Asperger Syndrome, brain damage, and the whole celiac thing...I am a bit like Sheldon from big bang theory with a bit of a food complex. Welcome.

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Hi and welcome :)

4 hours ago, Oxx said:

I figured this forum was a good place to start, but I am new here and don't really know the "social etiquette" around here.

This is a good place to start, not the only one, but a good one. There's plenty of helpful people who are a lot further down the road than you or me for that matter and lots of help and support available.  There's also a great resource of previous threads which you can search through for answers on all kinds of weird things which gluten can do. I get that this may be your first forum and you'd be more comfortable with an instagram group or similar, but there's advantages to this kind of online contact which may make it a worthwhile alternative. Although you'll doubtless find plenty of people on other social platforms if you try. 

I think your post is one of the most interesting I've seen here. I find the psychological and emotional side of this condition much harder to deal with than the practical side. It's genuinely tough going at times, or at least for some of us. I'm also at the opposite end to you in that I have no trouble forgoing gluten for life, but I lack the diagnosis you've just been given, I'm 'only' gluten sensitive in other words, but the effects are enough for me to not want any part of it. 

I'm going to throw a couple of things out there that may or may not resonate with you.

First, have you thought about your brain's relationship with gluten? It's a very interesting thing, it has an 'opiod' effect which gluten sensitive/celiac people seem to experience particularly strongly:

https://www.ncbi.nlm.nih.gov/pubmed/26825414

The point being that you may be experiencing this, that your compulsion to eat gluten may be, at least in part, related to it's impact on the opiod receptors in your brain. I know this is something I believe I experienced. It's remarkable how many of the people here who were being made ill by gluten foods had a particularly strong attraction to them. 

Second, does gluten impact your capacity to focus / make good choices? It does for me, it gives me a brain fog, it screws with my mood, makes me slightly bipolar even, and the weird thing is that there's an almost addictive side to that mental state, damaging as it is.  If this is anything like you, then the good news is that if you can kick the gluten for sufficient time, you can start to get the sort of detachment and focus that makes it far easier to handle the diet choices.

Third, have you considered that you may have other issues going on? I found that dairy for instance was also messing with me and that my mental state was far better without it. 

Fourth and last, have you considered getting some counselling to help you process this? You've had a diagnosis that has big implications on your life and there's a grieving process to go through that none of your none celiac friends and relatives will really understand. Talking online can help, but it may be you could find someone near you also to try and talk through some of the emotions you'll be feeling.

Hope at least some of the above of help. :)

Best wishes,

Matt

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@Alaskaguy With regard to the timing, I think that everyone is a bit different! I used to have a shorter time to onset when I was first diagnosed (within 24h). As time has gone on, and I've glutened myself less and less, I have noticed that the time gets a bit longer.  Recent history seems to matter a bit too - if I've been glutened recently and then get glutened again, the rash will show up faster on the second round. For example, in the last 3 weeks I got slightly glutened by inadvertent
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