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Just Found Out.......


S-J-L

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S-J-L Apprentice

That i do have celiac disease. Everyone thought so due to my really positive blood results, but my biopsies came back positive too :(

I have to ring my specialist tomorrow to discuss it and i am going to the doctors the next day.

At least now i know that i can feel better and feeling sick wasnt in my head.


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Ursa Major Collaborator

I know it is a shock. But try to think positive, because now you are going to get your health back!

Have you started the gluten-free diet already?

S-J-L Apprentice

I have to go on a big shopping spree first cos i dont have much gluten free food. Im also down to see a dietician. Hard to know where to start.

Ursa Major Collaborator

Well, the easiest and safest way to start is to just eat naturally gluten-free foods. Like potatoes, rice, meat, fish, eggs, vegetables and fruit. If you prepare them yourself you won't have to worry about what might be in them.

A lot of dieticians know less than you about eating gluten-free, and might even give you wrong advice. Some might be good, but many are a waste of money.

S-J-L Apprentice

Its hard to know what to eat for lunch. Usually i would just have sandwiches and fruit. Im at university all day, so i cant cook.

Any ideas?

MDRB Explorer
Its hard to know what to eat for lunch. Usually i would just have sandwiches and fruit. Im at university all day, so i cant cook.

Any ideas?

Hi,

I usually take in a salad, gluten-free pasta or potato salad if you need something more filling. Also I carry around gluten free snack bars with me everywhere I go incase I get hungry and tempted.

You could try having your usual lunch but using gluten free bread, but to be honest, most gluten-free breads taste like a kitchen sponge. You could try rice or corn cakes or corn tortillas.

Good luck :)

Joni63 Collaborator
Its hard to know what to eat for lunch. Usually i would just have sandwiches and fruit. Im at university all day, so i cant cook.

Any ideas?

Hi,

When I'm out for the day I use Hormel Healthy Choice turkey and soy cheese on rice crackers. If you can pack a small carry around cooler with you, you will have lots of choices.

Fruit, salad, spam, Planters mixed nuts, peanut butter and jelly, soy joy bars or gluten free bars, rice chex made into a snack mix w/ nuts raisins, chocolate chips, gluten free pretzels. I never eat the bread unless I can toast it at home, but crackers do work in place of bread.

There are lots of choices. I'm sure you'll find what works for you. :)


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S-J-L Apprentice

Thanks for the ideas. Ive only been gluten free for a day now and am already finding it hard. Please tell me it gets easier?? The gluten free products ive tried are OK but its just not the same. Im getting cranky cos i feel so limited.

My doctor is looking into getting me a food subsidy which is good.

MDRB Explorer
Thanks for the ideas. Ive only been gluten free for a day now and am already finding it hard. Please tell me it gets easier?? The gluten free products ive tried are OK but its just not the same. Im getting cranky cos i feel so limited.

My doctor is looking into getting me a food subsidy which is good.

Yes it does get easier. Eating gluten free has become second nature for me. I still feel a bit frustrated not being able to eat out at many places or at other peoples houses, but this is a small frustration compared to how much better I feel without the gluten in my diet. It takes a while to adjust to the alternative foods, mainly because you will still be craving for the gluten. Stick with it, experiment with recipes and products, you will soon find favorites that you enjoy as much as or even more that the old ones.

jparsick84 Rookie

Also, you might want to consider going to see a therapist or counselor. You are losing an entire way of life, and you're going to have to allow yourself to mourn it without wallowing. Eating gluten-free didn't start to get easier until I went to see someone - even just to talk to someone who will just listen, you know?

It does get easier, and more and more things are gluten-free all the time. Rice Chex JUST became gluten-free the other day, and remember fresh foods (meat, potatoes, fruits, eggs, veggies) are always safe if you prepare them yourself. And Cheetos and Fritos are both gluten-free, so you can still have friends over for a movie and serve "normal" foods.

The best advice I ever got was to remember that you're not normal, you're special. And being special is way better than just being normal. :)

Just take it one day at a time, keep a "good foods" list for meal inspiration, and remember you're not alone.

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    • trents
      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
    • pothosqueen
    • pothosqueen
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      Would it be rude to ask your age?
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      Wow! Thank you @trents I  really appreciate the responses. This line of diagnosis has me questioning a lot of symptoms over the course of my life. Very validating and very much a bummer at the same time. 
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