Trouble Staying gluten-free

[Salazarai]

I was diagnosed with celiac disease after I had my second son, back in 2005. Growing up, I ate whatever I wanted without any worries. I am a bread, cake, pastries, etc., loving girl. I was doing really well with the diet for about a year after my diagnoses...but since then I have slipped up quite a bit. As of this date, I have not been gluten free for almost a year now. I have a husband (not that this is his fault), who has never really been supportive of this disease. He grew up in a family that never concerned themselves with doctors, dentists, diseases, etc. So his big concern was all the money I was spending on something he had never heard of and therefore doesn't consider to be that important...again, this isn't his problem. My kids don't have celiac as far as I know, so I'm sort of alone in this situation. I would love to stay gluten free and feel better about myself. I've put on unwanted weight, I tend to get mild arthritis in my joints and hands, along with some ugly migraine headaches. I know being gluten-free helps get over all of this, but being part of a family that doesn't have to be careful, it's become really difficult. Not to mention, I know what I'm missing out on...unlike some who are born with this. How can I find the help and reassurance I need to get healthy and stay true to my diet. Any advice would be appreciated. Thanks for your time.

Sincerely,

Aimee Salazar

[Morrisun]

First of all, don't beat yourself up over it. I did the same thing. I was 100% gluten free for a little over a year and then I dunno...went crazy and was not careful about my diet. I wasn't eating gluten every day, but on a weekly basis.

What finally got me in the mindset that this was something I had to do, was when I started thinking about the consequences of not being gluten-free. Also, I spent years being really sick before my diagnosis (over 10 years) and I thought why on earth do I want to go back to how I felt then, when I have a way to be healthy and not have those issues?? I also was of the mindset that a little won't hurt. Well that in itself is wrong, but not only that I felt that for me it was a slippery slope. A little turned into a little bit more and a little bit more.

So now I've recommitted myself to being 100% gluten free. In fact I marked the day on my calendar just as a reminder of how well I've been doing. You just need to remind yourself of the importance of staying gluten-free and committing to it. I've found that places like this message board are a great reminder of why we need to stay gluten-free, and are full of great people who have answers to so many things, including many yummy gluten-free recipes.

[tarnalberry]

I like to remind people that the diet - like absolutely everything in life - is actually a choice. You don't have to do it. But think about the consequences of your choices very carefully.

Choosing to run across the freeway is a choice. But the consequences are accepting a very high risk of being hit by a car (or many) going very fast and being smeared across the freeway to gain very little. It becomes fairly clear to most of us that it's not really a good choice to go running across the freeway.

Choosing to eat gluten when you are celiac is also a choice. But the consequences include - in your case - joint pain (and possibly permanent joint damage), which takes away pleasure from activities you might otherwise enjoy and limits what you can do. They include nasty migraines (which have been linked to permanent neurologic damage), which gives pain and takes days away from you. I'm presuming they include other symptoms, possibly gastrointestinal which again gives pain and takes away from your day. They include a higher risk of nutritional deficiencies, like anemia and osteoporosis, which can make you tired and fragile and keep you from interacting with your friends and family or accomplishing your goals. They includes a higher risk of cancers - like lymphoma and intestinal cancers, which can greatly impact the quality of your life. All told, the consequences can greatly diminish the quality of your life, and can take 10 years (according to some studies) off the quantity of your life).

The trade-off for all those negatives? An easier time at a dinner table. Fewer questions to answer. The taste of bread. A quicker bit to eat in a rush. Fewer eye rolls.

For most of us, the tradeoff doesn't show it to be a worthwhile choice. You lose too much, and gain too little, in choosing to not stay on the gluten free diet.

Yes, you need to be strong. Yes, you need to have self-determination. Yes, you need to stand on your own often. Yes, you need to cultivate your support system, and sometimes in places you wouldn't ordinarily expect.

But is the tradeoff worth it?

[njbeachbum]

Tiffany, that was extremely well-worded. I echo every line of your post. I was diagnosed in November after suffering for 14 years with a diagnosis of small intestinal crohn's disease. When you've forced yourself to deal with the fact that "this is how life is just going to be for me", it becomes a reawakening when you get the correct diagnosis of Celiac disease. This is my chance to be in control of what makes my quality of life better. Does it suck that I can't eat the same foods as everyone around me? Yes, but to tell you the truth it's not so hard when you're preparing and eating stuff for yourself at home. My biggest challenge is eating out at restaurants with friends, on dates, or at work functions. But hey, if eating grilled chicken, steamed veggies and a baked potato at dinner that night keeps me feeling good (and full!) then there is always something better waiting for me to eat at home.

It may be a choice to exclude gluten from your diet, but for me it will just never be an option. Stay strong, and be true to what makes you feel best inside and out.

Best of luck,

Joe

[scotty]

...again, this isn't his problem.

how is this not his problem too?

[missy'smom]

You're not alone. We're here.

Do it for your kids.

I share this not out of self pity but because I don't want ANYONE to have to go through what my mother has. I've seen what this disease can do to a person. I lost my mother to it. She's still alive but hasn't been able to care for herself or do more than write a few first grade level sentences every few months to us kids since I was 17. It has ravaged her body and mind(she's still not gluten-free because her Dr...., I won't go into it). In all that I went through in the 8 yrs. I was undiagnosed, the thought that I didn't want my son to be without a mom, kept me going.

It's not easy but your kids need a mom that is healthy.

[lizzy]

HI ALL

First of all i want to say hi as i havent been on here in along time. i came here to look for some answers and the first thread i read was about eating gluten . the responsers i read where really good but am still unsure which road to go so let me please explain.

2 1/2 years ago was really sick went gluten free after reading my syptoms could be a result of eating

gluten but i have never had a positive result for celiac .

my illness as once again decided to show its ugly head and my nueroligist says it was a coincedance i got better when i went gluten free .so my deliema is do i go back eating gluten after all this time. Any advice would be most welcomed at this time . thanks

[missy'smom]

Hi lizzy,

My sister was having seizures and had SO many tests from a university hospital neurologist. She got to the point where they kept upping the dosage of her meds and they had reached the maximum dose and it was no longer working. She had been to the ER many times. Her neurologist told her straight up that he had no idea what was wrong and could no longer do anything for her aside from taking her off all meds, hospitalizing her and waiting for a seizure to happen. I was very concerned and kept trying to talk her into being tested for celiac disease. Long story short, she didn't do it but tested positive for adrenal fatigue, which is related to celiac disease and tried going gluten-free. From her other symptoms and response to the diet, it is clear that she has celiac disease. She hasn't had a seizure since. At the very least, her villi are healing and so she is absorbing her meds. Eventually she may try to decrease the dose and see if she can get off them.

[lizzy]

HI MISSYSMUM

thanks for your reply. i too was having seizures but they seem to have gone took nearly 2 years to get the under control but still left with other progressive neurolical problems. thats why my neuroligist dosent think the too are related , i would hate to start eating gluten and start being sick again with seizures but he seems to think i should be ok. thanks again

[lizard00]

First off, I have to say that I agree with Scotty. Because this is your problem, it's his problem,too. Is he unaware of the host of medical problems that you already are ecountering, not to mention what awaits you in the future? Does he really want to care for small children while you are down with a migraine or unable to get up because of your arthiritis... I would seriously have a chat with him and help to understand these potential problems. His support, or lack of, DOES make a difference. This lifestyle can be extremely trying at times, and if you don't have a good support system, its that much more difficult.

But, as Tarnalberry said, it ultimately is your choice. I think you have beat yourself up over it enough, you can't change the past. But what you can change is tomorrow.

I wish you all the best!! And know that we are always here!

[Phyllis28]

Are you in charge of the cooking and grocery shopping? My household is gluten limited, basically only bread and cereal. Dinner is easy to make gluten free. Replace gluten snacks with gluten free snacks. After many years of sharing my kitchen with the bread and cereal I set up a sandwich making station outside the kitchen. It contains an apartment size refrigerator, a large kitchen cart and a microwave along with dishes, silverware and food used with the bread and cereal.

Hope you are able to work this out.