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Anyone Around Albany Ny?


bremac

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bremac Apprentice

Anyone live in the Albany area? I have not met another celiac here and sometime I feel so alone.


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thecookingnerd607 Rookie
Anyone live in the Albany area? I have not met another celiac here and sometime I feel so alone.

Im in binghamton NY. Close enough.

blueeyedmanda Community Regular

I am in PA, but even though we are on close location wise, we are always local on here. Most of my close friends on this board are in other states. No matter the distance, their information has always helped.

Do you have any stores in your area to get gluten-free foods?

is there a local support group?

Welcome to our board!!!

blueeyedmanda Community Regular

duplicate post, kitty stepped on my keyboard...Lucky's first post :)

lmvrbaby Newbie

HI, I am from Waterloo NY. The west side of Syracuse, south east from Rochester. Like I read in the post before we are all local on here. Glad to meet you. I have run into a few people, no names exchanged only shopping in the Wegmans store that has Celiac. NIce to know someone else in the area. I have talked to the manager of the department in the gracery store and she says there are 9 or 10 families that shop for the gluten free foods in this store alone, so I know they are out there but have not met them personally. Maybe someday. Hope to chat more frequently. :D

blueeyedmanda Community Regular

I love that store!! Our store is not open yet so I will drive to the next closest one.

jerseyangel Proficient

Hi :)

I live in New Jersey, but my husband and I are both from Syracuse. Our families are all still up there.

I shopped at Wegmans years ago there, and now, finally we have one here. Great store!


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maferfay Newbie
Anyone live in the Albany area? I have not met another celiac here and sometime I feel so alone.

Hi I live in the Albany, Area, if I can be of any help, please don't hesitate to contact me.

eleep Enthusiast

I live in Florida now, but I'm originally from Niskayuna and I've lived in both Albany and Troy -- I'm actually thinking I might move back up there within a year or so!

NY547 Newbie

Hannaford has a good selection of gluten-free foods as does healthway on route 9. We are also in the Albany area, and like Erica, my daughter had inconclusice blood tests, then more recently the screen came back all negative. Her enterolab results were positive (low numbers, but positive). She has not had an endoscopy yet. I am still deciding whether or not to have it done.

The doctors have rules out everything with their blood tests including celiac, lyme, mono and a few others. She responded well to a gluten-free diet in the past, which is why I am still considering the endoscopy. Do many people have a postitve endoscopy after negative blood work? I thought the tests were pretty accurate these days.

Bremac, you are definately not alone. At a dinner last year, the man sitting beside me was celiac. What are the odds? There are 3 people in my immediate neighborhood that I know have celiac. That is not counting my daughter who is not a confirmed celiac. Yes, there are many people in this area who are coping with celiac disease! You are definately not alone!

  • 4 months later...
kristineb Newbie

I live in Guilderland and have only been a Celiac since June of '07. I found that Hannaford in Latham Fams is by far the best place for me to buy a lot of Gluten Free items, but my mother has been to Job Lots in Schenectady for the bigger bulk items like gluten free flour and things to bake with. She was a chef and now makes me tons of gluten free meals and muffins. I feel extremely grateful for that because it's really difficult to find any sort of quick on the go things to eat, so I freeze them and then stick them in the microwave to thaw. It's a huge adjustment but since she's been searching for more products and making them it's made things a bit easier.

hineini Enthusiast

I live in New Paltz and go up to Albany on a fairly regular basis.

I have just started a gluten-free outings / social group for the Hudson Valley - You can see more info in the Support Groups folder on this forum. The first meeting is in New Paltz (1 hr south of Albany) but future meetings will be in varying locations throughout the Hudson Valley. Maybe we'll make a field trip up to that gluten-free cafe and bakery (Sherry Lynn's) in Brunswick. Sign up for the group if you want to be updated about future events.

And if I can be of any assistance, let me know. I know of a few resources, including a gluten-free blog based in Albany.

EBsMom Apprentice
Anyone live in the Albany area? I have not met another celiac here and sometime I feel so alone.

Hi! We live in Columbia County, southeast of Albany. We're in Albany at least 3 or 4 times a week for my kids extracurricular activities. I'm gluten-free, as well as both of my children (ages 10 and 12.) I do a lot of my shopping at Hannaford's, but have also been visiting the co-op in Albany (Honest Weight) every week or so. I think that there are quite a few celiacs in the area....at least, the gluten-free quinoa bread flies out of the co-op so quickly that there *have* to be other celiacs around, lol!

Rho

MammaW Newbie

Southern Vermont about an hour and a half from Albany....(Not me...at least I don't think so...my almost 1 year old)

  • 4 weeks later...
mouth Enthusiast
Anyone live in the Albany area? I have not met another celiac here and sometime I feel so alone.

hI i AM NOT Celiac, but my daughter is.. Sorry not close enough.. Long Island,, NY here.. good luck..

lynn

  • 2 weeks later...
missmelissa21 Rookie

Albany area here. Not diagnosed celiac as of right now, but I have a GI appt. on December 17 where maybe I can figure something out.

Do all you Albany people go to Albany GI for gastroenterologists?

I'm seeing Dr. Ben, I believe.

I noticed a small gluten free section in the natural foods section of price chopper in slingerlands. Not much, but i don't know how much would be in a good size section.

mamaw Community Regular

Kristeneb

I see where you said your Mother was a chef & she makes you alot of gluten-free foods. You are so lucky.... perhaps she or yourself could share some of her gluten-free goodies recipes for the rest of us. It seems we all are always looking for something new......

thanks

mamaw

  • 2 weeks later...
rysmom Rookie

Hi, I am in Saratoga, NY. My son is a celiac and has a dairy allergy. I have been questioning whether I would benefit from a gluten free diet myself as I have terrible migraines.

I would be interested in meeting anyone to discuss gluten-free issues. We recently moved here and are still looking for a doctor I can trust. If anyone has any recommendations???

mouth Enthusiast
Hi, I am in Saratoga, NY. My son is a celiac and has a dairy allergy. I have been questioning whether I would benefit from a gluten free diet myself as I have terrible migraines.

I would be interested in meeting anyone to discuss gluten-free issues. We recently moved here and are still looking for a doctor I can trust. If anyone has any recommendations???

Oh Sorry I live down on long Island and use Schneiders Childrens Hospital. I know that they have satellite offices, I just am not sure where. sorry i could not be of more help.

lynn

  • 1 month later...
kristineb Newbie
Kristeneb

I see where you said your Mother was a chef & she makes you alot of gluten-free foods. You are so lucky.... perhaps she or yourself could share some of her gluten-free goodies recipes for the rest of us. It seems we all are always looking for something new......

thanks

mamaw

kristineb Newbie

My mom can pretty much change any recipe into gluten free. She makes perogies, banana nut muffins, corn muffins, stuffed shells, etc... If there are specific things you like let me know and I can have her modify the recipe the best way she can... The only thing she has to try and work on are bagels, they aren't to easy to keep them soft so she has had som problems with those but she's working on it.

kristineb Newbie
Hannaford has a good selection of gluten-free foods as does healthway on route 9. We are also in the Albany area, and like Erica, my daughter had inconclusice blood tests, then more recently the screen came back all negative. Her enterolab results were positive (low numbers, but positive). She has not had an endoscopy yet. I am still deciding whether or not to have it done.

The doctors have rules out everything with their blood tests including celiac, lyme, mono and a few others. She responded well to a gluten-free diet in the past, which is why I am still considering the endoscopy. Do many people have a postitve endoscopy after negative blood work? I thought the tests were pretty accurate these days.

Bremac, you are definately not alone. At a dinner last year, the man sitting beside me was celiac. What are the odds? There are 3 people in my immediate neighborhood that I know have celiac. That is not counting my daughter who is not a confirmed celiac. Yes, there are many people in this area who are coping with celiac disease! You are definately not alone!

I had a endoscopy done three years before my diagnosis and it was positive but my blood test came back negative. Three years after my endoscopy I started having tired symtoms and not feeling well. It took a couple of months but the celiac test came back positive.

  • 2 weeks later...
edgeyveggie Newbie

Rochester/Syracuse here

blueeyedmanda Community Regular
Rochester/Syracuse here

Well you have Wegmans which is celiac heaven!!!!

flourgirl Apprentice

Check out support groups online for the area. I'm pretty sure there are 2 or 3. I've looked because my family is in the Lake George area, and that was the closest I could find anything. My sister has had to take my neice to Albany for some of the testing. Her doctors are really messing around. 2 Positive blood tests. and they keep saying that they doubt she has Celiac, and they've been delaying a biopsy. What does it take? Meanwhile she's deathly ill, pale and growing tinier by the day.

Anyway.....I know there are a number of people not so far from you. After my diagnosis, my family members keep "running into" Celiace everywhere, and until last Nov. had never heard of it. We're out there.....just not wearing any banners and flags!

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    • knitty kitty
      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
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    • lizzie42
      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
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