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Newly Diagnosed And Mourning The Loss Of Diet!

Cujy

By Cujy
in Coping with Celiac Disease

Recommended Posts

Cujy Apprentice
Cujy
Posted

Well I am new to this whole celiac thing, and to boot a lactose intolerance. I found out on my 39th birthday! I am terribly upset, and people who say "could have been worse, at least you have an answer" make it worse. I was also one who was called a 'headcase' by doctors after landing in emerg with excrutiating pain and bloody stool, and every test coming back absolutely perfect. Until I paid the outrageous amount to have the bloodtest done, and had a scope and colonoscopy, both of which confirmed my diagnosis.

The food is sooooooo expensive! My family has been ultra supportive and refuses to eat unless there is something that I can eat, which isn't good considering my 12 has had a heart transplant, stroke etc....he can't do the diet. Im sad for them that they are willing to go without for me, I don't want that. Im depressed and find now that I have headaches everyday, and feel nautious, is this normal? Im assuming there is a bit of a grieving process right? Glad I found some other people on here who by the sounds of it feel the same way I do! :( Someone tell me that things will get better, and that the food isn't as horrible as it tastes? Sorry, Im to old to be whining like a baby....My bad.

Angela

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JustNana Apprentice
JustNana
Posted

Angela,

I think this is one place you can come and be utterly honest about your feelings. No one here is going to judge you.

I got diffused just this Feb si I am no pro but I'll share what I do know. These things helped me.

1. Make a list (a long one) of everything you CAN eat. All the meats, fish and fowl, individual fruits, vegetables and starches like potatoes and rice. Try building a menu around these instead of thinking you need to buy hundreds of dollars worth of Gluten Free food. I have purchased GR soy sauce cause I love stir fried food and you can have tons of different kinds. I love Udi's bread for my morning toast. Bionaturae makes incredible rigatoni that my whole family loves (and we're Italian) I have Crunchmasters crackers around for snacks with dips and spreads and everyone says Udis pizza crusts are awesome.

2. I was lactose intolerant but after 6 weeks gluten-free I am enjoying cream in my coffee, yogurt and cheese again.

3. Make sure you get a full vitamin panel and a complete metabolic panel too. I am seriously deficient in some important vitamins and minerals and am working hard to remedy that. This alone can make us feel better. Make sure your thyroid is healthy. There's a BiG gluten thyroid connection and low/high thyroid can make you very sick and very crazy!! :-)

4. Read everything I found about celiac, vitamins, minerals Probiotics, thyroid issues and dairy intolerance.

5. I keep coming here and listening to all the great advise and info.

6. I now feel I can actually reach out to other newbies to offer encouragement. Now THAT makes me feel good!

Best wishes and hang in there. Oh one more great surprise. After about a month of being gluten-free I stopped craving carbs!!!!! That's a good thing. I still am sick with many symptoms but know I am healing. :-)

2.

Cujy Apprentice
Cujy
Posted
  • Author

Thank you for the advice! Its I think harder to get gluten free products here in Canada then it is in the US, guess you have more population there, dunno. I do have somewhat of a selection when I take my son to the children's hospital where they have a specialty food shop.

It will be a whole lifestyle change, as I loved eating, loved foods and never gained any weight. It was a win win situation until I was diagnosed. The commercials on TV make my mouth water with longing for those deep fried, sickeningly yummy foods! Hard to envision not ever having my native German food again, cant substitute some ingrediants and get the same results.

Anyways, will keep reading, and glad to have found some others with my same problems, and same issues with doctors.

It seems now that the doctors have a reason for every single thing thats wrong with me, its all the celiacs fault! I have kidney problems right now (which I understand can also be because of the celiac) and they refuse to do an ultrasound! I pee out white clouds of sediment sometimes, have even taken it to the docs, along with stabbing pains in my side and back, and nothing. I get the "oh go on your diet, Im sure that will take care of it!" :angry: The headaches and nautia Im assuming are because Im lacking something nutritionally now (only for the last few days since Ive been gluten-free).

Anyone else have kidney issues like me?

Jetamio Apprentice
Jetamio
Posted

Hi Angela,

I'm still fairly new to this myself. I don't have kidney issues but I would suggest pushing your doctor to look into it more or perhaps finding another doctor. Don't let them dictate your health. Lots of things will get better as you heal but kidneys are important. I ended up with permanent nerve damage in one eye that resulted for non-stop sinus infections -one of my reactions to gluten.

The first couple of weeks are the hardest. But then I started feeling better. I've had some ups and downs as my body heals but feeling better has made the food I can't have less appealing. Find a couple of good substitutes to help you transition if you need and stick to good clean food for healing. When you get discouraged, think about what is better. Make a list. For me, not having infected ears is much better than bread. :)

These boards are filled with great people and you can find lots of info and help too.

Jetamio

ldymistic Newbie
ldymistic
Posted

Open Original Shared Link

this should help. good luck

JustNana Apprentice
JustNana
Posted

Angela,

My labs show a raised creatinine and one other thing that shows some kidney damage. I'll have to go look. I have no symptoms and am trying to learn how to protect them from further harm. Anyone know which foods, supplements, etc are good for kidneys?

I am also goi g to ask for adrenal function test. Those little glands live on top of kidneys and are probably pissed off as well. What really bugs me is that my thyroid it also bei g attacked by my body and will eventually destroy it. There is no cure for the Hashimoto's autoimmune thyroid thing, just symptom control with constantly adjusting Meds.

love2travel Mentor
love2travel
Posted

When I went through gluten withdrawal, I was very nauseous and had headaches for about 2-3 weeks but it was temporary. And yes, there is a grieving process. It took me several months before I could walk past a bakery without feeling sorry for myself. Now a year later things are far different. It is so part of my daily life that I really do not think about celiac unless I am eating out. Even when purchasing groceries I don't think about it even if I am purchasing different things. It is second nature.

Yes, gluten-free things ARE expensive. Do you have a Nutters where you live? I live in Alberta and the first Tuesday of the month (today) the entire store's stuff is 20% off. I take advantage of that to purchase my flours and such. But I buy little processed stuff as I prefer to make everything possible from scratch for two reasons: 1. I know what is in it; 2. I love to cook!

You can and will get through this. I was in your position a year ago. We all were. One day (or even one meal) at a time! :D

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WendyLee Rookie
WendyLee
Posted

Well I am new to this whole celiac thing, and to boot a lactose intolerance. I found out on my 39th birthday! I am terribly upset, and people who say "could have been worse, at least you have an answer" make it worse. I was also one who was called a 'headcase' by doctors after landing in emerg with excrutiating pain and bloody stool, and every test coming back absolutely perfect. Until I paid the outrageous amount to have the bloodtest done, and had a scope and colonoscopy, both of which confirmed my diagnosis.

The food is sooooooo expensive! My family has been ultra supportive and refuses to eat unless there is something that I can eat, which isn't good considering my 12 has had a heart transplant, stroke etc....he can't do the diet. Im sad for them that they are willing to go without for me, I don't want that. Im depressed and find now that I have headaches everyday, and feel nautious, is this normal? Im assuming there is a bit of a grieving process right? Glad I found some other people on here who by the sounds of it feel the same way I do! :( Someone tell me that things will get better, and that the food isn't as horrible as it tastes? Sorry, Im to old to be whining like a baby....My bad.

Angela

I'm with you there, Angela. This is week 3 of diet and I'm still upset by my loss of 'freedom of choice' so don't you feel bad for feeling sorry for yourself. Even worse when you have to battle the doctors, they're suppose to be helping us not working against us. My DH (Dear Husband) can't do the diet either, he has Chronic Fatigue Syndrome and our diet's clash. I cried every morning the first week of the diet.

The good thing is that lactose intolerance is usually temporary so I've been told.

But the lovely ppl in this forum are just marvelous and will answer any questions they can which is most I'm betting.

Allow yourself to grieve

Wendy

jayjay57 Newbie
jayjay57
Posted

Hang in there and rely on support like this to get you through. I promise it will get easier and I totally agree with the whole grieving process thing. It took me several months to get where I wasn't craving certain things and just like a death in your family I went from being sad, to mad to feeling sorry for myself but it is all so worth it. Everyday I spend some time online researching gluten issues. What I come across only confirms my doubts that I don't think anyone should eat gluten! OK, maybe that is a stretch but I know I ceratinly feel so much better. I no longer cook anything but gluten free in my household for my family and guests. Most guests don't even realize they are eating gluten-free, my family agrees that it tastes just as good. Good luck, hang in there, you will soon feel better.....oh and I too was lactose intolerant to some degree before but after the healing process I can handle several things I couldn't before like VANILLA ICE CREAM!!! Yippee.

JustNana Apprentice
JustNana
Posted

Wendy,

I had mild lactose intolerance and after just 7 weeks gluten-free I seem to be able to tolerate cream in my coffee and cultured dairy like yogurt and buttermilk. I won't be chugging a big old glass of lowfat milk soon, but I am happy. Hope you find lactose a friend in the near future.

Linda

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