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afitgirl added a topic in Celiac Disease - Coping WithIt Is A Huge Deal! It Is Not A Big Deal? (My Plan)Hi guys.
I'm less of a spazzzz about it now... I think. I appreciate all the time and thought so many of you put into helping me cope one week into this diagnoses. Now I found myself thinking, this is a huge deal!! Wait, maybe this isn't a big deal after all. I'm confused. Is it what you make of it?
The food at home is not a problem for me at all. I'm super used to eating healthy and I'm the one that brings the veggie and fruit trays to picnics with friends. No biggie. My house is going gluten free and we are dumping all the cooking stuff that is plastic or wood and replacing the toaster and stuff like that. The restaurant thing is what is making me nervous. I've found some help with real life celiacs and they seem to tell me that you take the precautions at restaurants that you should, you don't eat food that is iffy but then you live your life. Basically saying it was okay to order a salad and baked potato (bringing my own dressing in my purse--which I've done for years anyway) telling the wait staff your needs and then enjoy your meal. Does that sound right?
Here is my plan. Can I have some thoughts on this?
Live day by day until I have:
-uterine ablation (what started this mess---scheduled June 11th)
-Meet with GI (still haven't seen her---sigh...waiting to be called with appt)
- Have endo for damage.
-After that, clean out kitchen and eat gluten-free 100%
-Trust labels on foods (this is a big issue for me. So many scare me about that reading here/books and I don't want to be that way. The real life celiac friends (2 of them) say I should trust labels)
-Find 5-6 restaurants that I feel like I can trust. Tip well, get to know manager.
-Make it through beach trip with family/friends
-Make it through cruise in July with husband and friends (super scared of gluten-free on the carnival cruise)
Continue this until 6-8 months from official gluten-free start. Have new blood panel and check levels. If negative or dropping decently continue on path. If not, sink into deep depression. (Not really....but I'm fearful of that).
If all goes well then I will look into another endo 12-18 months later.
Sorry for typos. 3 year old on lap.
Thoughts on any of this?
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afitgirl added a topic in Gluten-Free Foods, Products, Shopping & MedicationsWhat Can I Trust?This is a huge issue for me. I don't know what is okay and what isn't? I'm not worried about whole foods but how do I know what products are okay?
I was excited to discover loads of stuff labeled gluten free and although I cried at the store, I at least brought home stuff to try. But now I read that nothing is safe? How do I really know? Calling seems insane for every single product and then I'm just trusting the person on the other end who doesn't care about me at all???
How does this work?
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afitgirl added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsBlood Transfusion And Blood PanelI'm sure to you guys its obvious I'm in denial. But I'm looking for any hope I can. I felt great! Amazing and then one day dropped to the ground. No iron, low hemos were my problem. I do have extremely heavy periods (think: crime scene) that they said were the problem.
I needed two bags of blood (which I assume were from two different donors) Since that day April 23, 2014 I haven't felt the same at all.
Horrible and a struggle to pick myself up. Before I was on cloud 9.
My question is:
Possible at all that my blood transfusion gave me positive celiac blood results? The transfusion and tests were done 19 days apart.
At the hospital my other nutrients were great. Normal potassium, calcium, and sodium. The only weak area was my iron.
And really my periods have to have some blame in that. Every 19 days and SOOO heavy. Since the transfusion I have been on iron supplements and folic acid (to help absorb) it and my levels are all normal or super close to it. I only take one pill of each a day.
I also ask because the ran a 3 month blood screen (whatever that is--checking sugars for diabetes) and it came back inaccurate due to the recent blood transfusion.
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afitgirl added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsWhen Do I Start gluten-free?I'm confused at when to start. I have positive blood result (big panel) and set up to see a GI (referred today).
I'm trying to change my big food items to gluten-free already because I'm know I'm still getting gluten from a ton of other sources. I'm scanning things with an app but not overly reading labels. I live in a totally glutened house right now.
I don't know if my GI will want a biopsy or not. I will probably push for it (even thought I'm scared) because I need to know for myself. I was told some Docs might see my blood work and scores and that will be enough.
But I have anemia. I'm on Rx'd iron, folic acid and a multi-vitamin. As well as birth control pills strong enough to control my heavy periods until I have a uterine ablation done June 11th. Then I hope to be able to drop the bcp and maybe some of the other pills for gluten free ones. (They may be already but I haven't researched it yet- because I'm hoping not to need BCP to begin with after the procedure). Not too mention whatever recovery pills I may need to be on after the ablation procedure.
So when do I change my kitchen, stop eating out, check every label, change my medicines, and basically give up my entire life to succumb to the hell that will be gluten- free?
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afitgirl added a topic in Celiac Disease - Coping WithContamination Anxiety- Help!I'm new and still very bitter. I am trying to understand as much as I can. I have read conflicting information about cross contamination. I'm pretty sure I can make gluten free choices for food. I'm not overly worried about that (although I am sad). But I don't understand the cross-contamination thing at all. People take such different approaches. Do I need to worry about the Tim Horton frozen beverage machine that makes 99% gluten free drinks on it? Do I worry that a roll brushed agaisnt my baked potato? Can I just pick croutons out of salads? Do I really have to worry about using a separate toaster? Can I trust that a restaurant prepared my gluten free choice correctly?
Will cross contamination killl me? Can I eat gluten free to my best ability without worrying about 1 tiny missed molecule?
Will taking 99.5% of all gluten out of my diet not start to heal me? So if I do get a tiny bit here or there it won't do real damage?
I don't have real GI symptoms (that I know of) I found out about celiac through a random blood test because my anemia (blamed on heavy periods) was so severe I needed a transfusion. How will I know I'm safe?
I'm so frightened about this.
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