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fisharefriendsnotfood

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floridanative Community Regular

Okay - here's mine. My husband and I are celebrating Christmas with my family in another state. Originally I thought I could not possibly start the diet until Jan. after the holidays and a business trip. I know I was really just trying to make it easy on my family because my Mother makes a big deal out of the fact that we don't eat red meat. Now with my anemia I do eat red meat about twice a week. So now I have moved my biopsy up to right after Thanksgiving. I know that I will go on the diet regardless of the results so I can see if my anemia improves and that will give me an answer - neg. biopsy or not.

So I tell my sister when she calls last week to discuss her 'international Christmas meal' that she serves on Dec. 23rd that I'll be on the gluten-free diet then. She is making something with soy sauce/honey and I tell her I'll bring my own soy sauce and make my own sauce since. So today I speak to my Mother and she says my sister told her I'd be on the diet at Christmas and why was that? I explained that I'd rather get started sooner rather than later since if I have celiac disease I'm damaging myself every day. So she asks about Christmas dinner and I say I can have everything we normally have, just have to make homemade cornbread since the mix we use is not gluten-free(oddly). I tell her the only thing I can't make regular is pecan pies and I'd try and figure out how to make a gluten-free pie crust and my husband will make a reg. pie for them since the filling is for two pies. And I say that I can't have fried onions (from can) for the green bean casserole but my husband may try and fry some onions up in gluten-free flour and we'd test that out here before the holiday. Side point I must mention. I have told my Mother about all my invasive tests and about the positive bloodwork that I probably have celiac disease. I explained as much as I could about the fact that there is gluten in so many things including many non bread and non pasta products. Okay so after I say we can't use French's fried onions in the casserole, she says "oh we can just use saltines - you can have those can't you?" Hello??!!!

This is one time I know it's such a blessing that we don't see my family but a few times a year. My Mother doesn't want me to have celiac disease mostly because she doesn't want to have it and she will never get tested I'm sure. And that's her right if she wants to shorten her life span, that's her business. When I first mentioned what my doctor thought I could possibly have and I read up on it and then told my Mother. She was all excited to get tested herself since she has some symptoms that I think could indicate celiac disease - her docs have no answers about what is wrong with her. So recently I asked her if she'd talked to her doctor and she just said no and that she didnt' think she could have celiac disease. Well she just won't get tested because she thinks it's better to be in denial and that's the way she is with everything in her life so this will be no different. That's her problem not mine. I will give everyone in my family the best articles I can find on celiac disease (recommendations from any of you appreciated) so at least they have the knowledge that they should get tested and I can feel good that I did my part to educate them. And I will send the articles with thank you notes from Christmas so I don't ruin our holiday together.


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stef-the-kicking-cuty Enthusiast
As if pollen allergies are "normal" - those people are allergic to air!!!

I love it!!!

(I've been skittish about juice ever since I got glutened by stupid Tropicana).

You've got glutened by Tropicana, too?

And one other thing... I just wish that all companies would clearly list gluten on the label and say if there is cross contamination!

That's the same thing I'm wishing for. It would make life so much easier. No more carrying folders with allowed glutenfree food in there around. No more guessing. That would be really cool.

She's really got you where she wants you.  You buy it and she eats it and you're guilty if you tell the truth about it.  Every addict's dream.  Except that's killing both of you.  Your ignorance and her denial.

I hate people like that. This is soooo annoying.

Uuugh, I love this thread. Strangely enough I enjoy reading people's rants, too. Makes me feel better and gives me the feeling I'm not alone. Before I discovered this one however I already had a ranting session today in another thread.

But I soooo DO MISS KitKat!!!! :P

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    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
    • Russ H
      This treatment looks promising. Its aim is to provoke immune tolerance of gluten, possibly curing the disease. It passed the phase 2 trial with flying colours, and I came across a post on Reddit by one of the study volunteers. Apparently, the results were good enough that the company is applying for fast track approval.  Anokion Announces Positive Symptom Data from its Phase 2 Trial Evaluating KAN-101 for the Treatment of Celiac Disease https://www.reddit.com/r/Celiac/comments/1krx2wh/kan_101_trial_put_on_hold/
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