BabsV
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Latest Celiac Disease News & Research:
Everything posted by BabsV
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Thanks everyone for the responses. The support and information I find is always invaluable... To answer some questions: The pain I have is mostly on on my left side, near my ribs...sometimes it starts under the sternum but usually is lower down than that. It often feels tender to the touch and if it is really bad, it feels inflamed on the inside. It...
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Soooo, in the last couple of weeks I've been having a lot more pain issues -- which none of my doctors seem to be able to address. Saw my usual gastro (let's call her gastro #1) and she still thinks functional abdominal pain. Won't even listen to me wondering if it could be another food intolerance since I had pain but not the usual symptoms of being...
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ARCHIVED Should I Be Scoped Again After 1 Year gluten-free?
BabsV replied to BabsV's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
Thanks for the input. The doctors I'm around right now are really really keen on tests -- I'm tired of schlepping to get blood drawn and getting ultrasounds not to mention I don't want to have any unnecessary procedures! -
We rented an apartment for the time we were in Rome -- it ended up being cheaper than a decent hotel and we had more space plus a kitchen so we could do breakfasts 'in.' We used the website oh-rome (just google oh rome apartments) -- there was a huge selection you can narrow by what you want (location, wi-fi, satellite tv, parking, etc.) The apartment...
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I'd take Washington DC or Arlington too! I am setting up an appointment at the Univ of MD Center for Celiac Research for some specific ongoing issues but don't want to always be schlepping 1+ hour to see a doctor...I'm just lazy that way...
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They may want to go in and check and see if there is anything else wrong...ulcers, gastritis, H. pylori, etc. That might relieve any worry that is it something other than gluten related since you seem to feel that is the main issue. I've been scoped 3 times. While not the most pleasant experience it really wasn't that bad. As long as you are sedated it...
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ARCHIVED Should I Be Scoped Again After 1 Year gluten-free?
BabsV posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
So, just trying to figure out follow-up tests, etc. I've been gluten-free for 8 months now...we'll be moving back to the States in 2 more months and I'm trying to sort out new doctors (who might actually have some knowledge about Celiac!) and schedule appointments if at all possible. Did anyone have another biopsy after 1 year gluten-free? Is that standard... -
Definitely pay attention to the scoops -- most places we went, each tub of gelato had its own scoop (there was absolutely no sharing) so I didn't worry too much!
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ARCHIVED Confused Why I Have A Good Day & Then A Rough Day
BabsV replied to mommyof4's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
I'm 8 months gluten-free and experiencing the same thing. I have started trying to sort out other foods that might be a problem...I've gone grain free and that seems to be helping some. I was eating a lot of quinoa but my system is in better shape without it apparently. -
OMG! You are going to love Italy! We went to Rome for 5 days at the end of February -- it was glorious. We rented an apartment but I barely cooked (only eggs for breakfast.) Ate out for lunch and dinner and didn't have a problem anywhere in terms of being glutened. Servers know all about Celiac and could point out items on the menu that were appropriate...
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Remember, in the United States there is no law or FDA regulation as to "gluten free" labeling as in the EU and other countries. I know that comments were being submitted to the FDA in the last few months but I haven't heard anything further. Did I miss it?
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Wow, India, thanks so much. This is very helpful!
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Congrats on your first anniversary! I am glad that you are regaining your health slowly but surely. I hope you continue to improve.
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ARCHIVED Newly Diagnosed With Celiac
BabsV replied to foofangirl's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
I think everyone will have a different answer...depends on how long you were sick, how much damage your body sustained, what your symptoms were, how you heal, how strict you are on the diet, accidental glutenings, etc. The doctor who did my biopsy told me, when she gave me the results, that I was to give the diet 3 months for ANY hint of improvement and... -
So, since the Polish doctors are rather stumped by my case of abdominal pain at the moment (actually they've been stumped for almost a year!) there is talk of sending me to London to see some specialists there (including getting a HIDA scan since it seems that "no one does those anymore in Krakow...we use MRIs" and I have a severe claustrophobia issue not...
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ARCHIVED Help! Is This Safe Or Not?
BabsV replied to dani nero's topic in Gluten-Free Foods, Products, Shopping & Medications
The 'under 20ppm measurement' is what the EU uses to define 'gluten free' -- it is under the Codex Alimentarius. This is why we have gluten-free wheat starch in the EU -- which makes me ill (I ingested it by mistake when I was a newbie and didn't know better!) This link actually has a good explanation: Open Original Shared Link -
ARCHIVED Gfd Making It Very Hard To Stay True!
BabsV replied to Cujy's topic in Coping with Celiac Disease
Are you eating a lot of gluten-free replacement foods? I did at the beginning and things didn't start to get better until I basically dropped them all and went strictly natural -- meat, veg, fruit (minimal), rice, potatoes. I cut out all dairy and it was incredibly difficult as I was the HUGEST cheese fan. I re-introduced only small amounts of hard cheese... -
This is all great advice. As for the pet food...I'm currently living where they look at me like I'm crazy when I ask about gluten-free dog food so our family dog has food that *may* have gluten in it (labeling is not that great here in Poland for some things!) I wash my hands like crazy if I have to touch his food, his treats, his toys, his dishes, pretty...
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Sounds amazing! Glad it was a successful trip.
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Wow, I just had a follow-up phone conversation with my doctor and now says he wants me to have the scan?!?! He's still skeptical but says that ultrasounds and CT scans can't always pick up on gallbladder problems! Now I'm working on getting it scheduled. Even if it proves to NOT be a gallbladder issue at least it is something (big) I can cross off the list...
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Hope your recovery process goes smoothly and you are pain free soon! This is interesting to me because I've been gluten-free for almost 8 months and still having serious abdominal pain issues. My doctor mentioned something about the gallbladder and then dismissed it since scans I had done last year (several months prior to Celiac diagnosis) didn't show...
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ARCHIVED Functional Abdomial Pain
BabsV replied to BabsV's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
Thanks Skylark. The doctors here in Poland don't seem to want to address the pain issues...they are definitely taking a wait and see approach. But it's been almost a year and I'm exhausted. Grrrrrr. I'm limiting dealing with doctors because they all seem to contradict each other, and I haven't found one who seems to have any real understanding of Celiac Disease... -
Wow. Thanks for the input. I didn't realize that the head of the Center was so well-known. I was just happy to hear that they are close to where I'll be living (relatively speaking). I've had such horrible times with doctors here in Poland...
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Krakow Restaurants: Olive Tree -- the owner is gluten-free (my husband knows him through work) so has tried to make the menu as gluten-free as possible. They should have an awareness of the issue but definitely mention it to the server. The owner is usually present in the restaurant and speaks fluent English. This is a kosher restaurant and closes from...
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I am currently living in Krakow, Poland and have found being gluten-free very challenging. Most people (shops, restaurants, etc.) do not know anything about it...wheat and barley are huge staples in Polish cooking. I've had a lot of issues with the quality of meat -- been glutened more than once by chicken breasts and turkey that I've bought at stores/butchers...