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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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    • catnapt
      so do you have celiac or not? 🤔 why are your vision issues undiagnosed? 😢 what does your ophthalmologist say?  do you have a serious vit A deficiency? what do you take for it? how long have you had celiac disease and how long did  it take to get a diagnosis?   if you are legally blind there are adaptive devices that will help you. I have vision difficulties as well but did not qualify (at least not yet)   do you have a vit A deficiency? why are you undiagnosed? what does your ophthalmologist say? I have a retinal specialist and he tells me my eye condition can not be fixed- until/unless it gets to the point of where surgery is safer since the surgery can leave me actually blind... so you want to wait til it gets really bad 🤪     I hope you find what works for you.    PS   the medication I started at the same time as the gluten challenge is obvious from the condition it's trying to treat. you can google it 😉 it is not an for any auto immune condition.   
    • knitty kitty
      @catnapt,  I apologize.  Obviously I've confused you with someone else.  I have vision problems due to undiagnosed Celiac complications.  Being legally blind, y'all look the same from here.   You still have not said which new medication you started taking.  Parathyroid disorders can affect antibody production.  Bone Loss Correlated with Parathyroid Hormone Levels in Adult Celiac Patients https://pubmed.ncbi.nlm.nih.gov/36619734/ Effect of vitamin B1 supplementation on bone turnover markers in adults: an exploratory single-arm pilot study https://pmc.ncbi.nlm.nih.gov/articles/PMC12075007/
    • catnapt
      during the gluten challenge I did not consume any wheat germ   the wheat germ is TOASTED - it's the only way it is sold now afiak doesn't matter I consume vast amounts of lectin containing foods PROPERLY prepared and have for well over a decade. They do not bother me in the least.    no anemia however the endo who ordered the celiac panel is the one who suggested the 2 week gluten challenge of eating at least 2 slices of bread per day or a serving of pasta- ALSO put me on a new drug at the same time (not a good idea)  I ate 4 slices because they were thin, or 2 English muffins, and just once some lasagna that someone else made since I stopped eating wheat pasta years ago. The English muffins caused some of the worst symptoms but that pc of lasagna almost killed me ( not literally but the pain was extreme) during those 12 days there were at least 3 times I considered going to Urgent Care.   This entire process was a waste of time TBH due to being on that new drug at the exact same time. it is impossible to tell if the drug I am taking for the possible renal calcium leak is working or not- given the dramatic response to the gluten challenge and resulting nausea (no vomiting) and eventually a loss of appetite and lower intake of foods so now I have a dangerously low potassium level   I don't have a simple case of celiac or no- I have an extremely complicated case with multiple variables I am seeing an endocrinologist for a problem with the calcium sensing glands - that system is very complicated and she has been unable to give me a firm diagnosis after many tests with confusing and often alarming results. She also appears to be inexperienced and unsure of herself. but I don't have the luxury of finding a new endo due to multiple issues of insurance, lack of drs in my area, money and transportation. so I'm stuck with her At least she hasn't given up    in any case I can assure you that lectins are not and never were the problem. I know they are a favorite villain in some circles to point to, but I have ZERO symptoms from my NORMAL diet which DOES NOT contain gluten. The longer I went without bread or foods with wheat like raisin bran cereal, the better I have felt. my body had been telling me for several years that wheat was the problem- or maybe specifically gluten, that remains to be seen- and stopping eating it was the best thing I could have done   I almost had unnecessary MAJOR SURGERY due to joint pain that I ONLY have if I am eating bread or related products I assumed it was the refined grains - never really suspected gluten but it does not matter I won't put that poison in my body ever again not that it is literally poison but it is def toxic to me        
    • knitty kitty
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    • catnapt
      oops my gluten challenge was only 12 days It started Jan 21s and ended Feb 1st   worst 12 days of my life   Does not help that I also started on a thiazide-like drug for rule in/out renal calcium leak at the exact same time No clue if that could have been symptoms worse 🤔
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