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My Family
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I haven't been diagnosted just yet, but I have suggested to my mom that she and one of my little sisters get tested.

I have 3 sisters and the one that I am suggesting that she have tested has migraines to the point of vomiting and has recently been experiencing bloating after eating bread. Which is just crazy considering the fact that she is a fan of bread.

My mother is willing to have my sister tested but said not to worry about her. She has managed this long. My mother was told she had IBS about 8 years ago.

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Mnicole - convincing family is tough. I've been trying to get my mom to get tested. She was diagnosed with IBS over 20 years ago, has MS and Fibromyalgia...tons and tons of symptoms but she hasn't agreed yet. Every time we talk I share the positive changes I'm finding and every so often I suggest she think about it. She's stubborn but the apple doesn't fall far from the tree so I'll keep trying! Focus on the positive with your mom. Maybe you can convince her.

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Oh my.. why do people accept all those other diagnosis like IBS, Fibro etc etc but not celiac/gluten intolerance? Such a mystery. There is a PHD thesis in this. Why are other diagnosis acceptable but another not? Pure psychology and perhaps some history, agricultural/economic PR.. I'm not sure exactly.

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Oh my.. why do people accept all those other diagnosis like IBS, Fibro etc etc but not celiac/gluten intolerance? Such a mystery. There is a PHD thesis in this. Why are other diagnosis acceptable but another not? Pure psychology and perhaps some history, agricultural/economic PR.. I'm not sure exactly.

I know for me, I am having a hard time coming to grips with it all. I accepted the IBS diagnosis without blinking because all I had was stomach issues. There were some days it was so bad that I felt like I used an entire package of tp and spent my day in the bathroom, and other times where I would go a week or more without any problem at all, some days I would have the OPPOSITE problem: Constipation.

But that was all. so I could accept it. I learned to deal with my tricky stomach and stopped being shy about public bathrooms. Its just the way life was. I barely even gave it much thought because no one told me to restrict my diet. I had my gall bladder removed, so I did watch the heavy, greasy stuff but otherwise the dr basically shrugged his shoulders and wiped his hands clean of me. And I trusted him.

Now, its more than GI stuff, its headaches, sinus infections, cramps, joint aches, chills, fever and irritibility. But still, I am having a hard time accepting celiac disease as a diagnosis only because its become so widespread in the last few years, I am afraid of accepting it in case its just the "new and cool" diagnosis. I am being told to restrict my diet...that means a lot of change for this bread lover...

Its all pscholigical. I WILL accept it and I WILL do what I need to but its so severe to me, its hard to just...come to grips with. I also am having a very hard time getting my parents and in laws to understand. My husband is awesome, he gets it, as do my kids, but everyone else looks at me like I am crazy and "buying in" to the newest and coolest diagnosis...

its hard.

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Oh my.. why do people accept all those other diagnosis like IBS, Fibro etc etc but not celiac/gluten intolerance? Such a mystery. There is a PHD thesis in this. Why are other diagnosis acceptable but another not? Pure psychology and perhaps some history, agricultural/economic PR.. I'm not sure exactly.

Easier to pop a pill than to change eating habits.

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Easier to pop a pill than to change eating habits.

Yup, the "fix me" mind set.

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It took me over two years to convince my mom to get tested but she finally did, and guess what? She has celiac disease. I knew it all along, and I suspect that she knew too and didn't want to test until she was really ready to cope with the diagnosis. I, myself put off testing for almost a year after my youngest was diagnosed. I knew he had gotten it from me and I wasn't ready to give up my favorite foods just yet. Plus, I was so focused on him and his health that I didn't want it to be all about me (too).

My kids and I did a family tree to see how many of our blood relatives need to be tested, and the number was a staggering 56! (My mother has 12 brothers and sisters and they all have children). Out of those 56 only me, my two children, my mom, and my brother (negative!!) have been tested. All others have refused.

I remind them constantly on Facebook and our family website. I send articles and little tidbits about yummy gluten-free foods but it doesn't work. My cousin, who is more like a sister to me, just flat out refuses to test her kids. It's infuriates me because her youngest is sick a lot with celiac disease like symptoms and I worry about them. But what more can I do? I just get frustrated and then...let it go.

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My mother just showed me her vitiligo. Crazy that she will not get tested.

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    • Hi Aly and welcome You may want to repost this in a new thread, that way more people will see it and can advise you.  I think you would be much better off getting the celiac test now, if you stay off gluten you will need to go back on it and that can be much harder. That said, loads of your symptoms look like they could be gluten related.  I had a persistent 'trapped nerve' for instance under my eye which would twitch like crazy. Since I went gluten-free doesn't happen any more.  Best of luck! Matt
    • Your scalp sounds like seborrheic dermatitis. I have that and although its better after going gluten-free its very persistent. The dermatologist recommended Nizoral shampoo for it and it does help. I think dairy has a big part to play with skin problems, for me at least. 
    • I was diagnosed this year and I live on Oahu. I have yet to meet another celiac, so that tells you something about our limitations here. I work in Waikiki and do frequent Rouffage. It is nothing fancy, small place, but keeps me fed when I need something. I also like Greens and Vines. It is a vegan restaurant and worth every penny. Greens and vines sets up at the KCC farmers market on Saturdays too. Places in Waikiki that do offer a gluten-free menu include, PF Changs, Dennys, Big City Diner and California Pizza kitchen. I do not trust those places due to the risk, but they "offer" gluten-free options. I did try and order a beer at Yard House in Waikiki. They label clearly states that it contained wheat, so yeah sent that back with the waiter. I have also tied Doraku in Waikiki. I called ahead and spoke with management. That went well and they offer gluten free soy sauce. There is a deli at Down to Earth Grocery store in Honolulu that has gluten-free options, but the whole foods here do not offer hot food that is gluten free. They do have a hot food bar, but you have to stick to the whole plain salad and veggie options. It's good to hear the hotels here are getting better, beyond Waikiki hotels there is no one really interested in being gluten free.
    • Just found this site today. Did you ever find one? I was diagnosed this year and I live on Oahu.
    • I was diagnosed this year and I live on Oahu. I have yet to meet another celiac, so that tells you something about our limitations here. I work in Waikiki and do frequent Rouffage. It is nothing fancy, small place, but keeps me fed when I need something. I also like Greens and Vines. It is a vegan restaurant and worth every penny. Greens and vines sets up at the KCC farmers market on Saturdays too. Places in Waikiki that do offer a gluten-free menu include, PF Changs, Dennys, Big City Diner and California Pizza kitchen. I do not trust those places due to the risk, but they "offer" gluten-free options. I did try and order a beer at Yard House in Waikiki. They label clearly states that it contained wheat, so yeah sent that back with the waiter. I have also tied Doraku in Waikiki. I called ahead and spoke with management. That went well and they offer gluten free soy sauce. There is a deli at Down to Earth Grocery store in Honolulu that has gluten-free options, but the whole foods here do not offer hot food that is gluten free. They do have a hot food bar, but you have to stick to the whole plain salad and veggie options. It's good to hear the hotels here are getting better, beyond Waikiki hotels there is no one really interested in being gluten free.
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