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Anyone Around Albany Ny?

bremac

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katm12981 Newbie
katm12981
Posted

Hi,

I'm not celiac, but my fiance was recently diagnosed (only a couple of weeks after our official wedding cake tasting, how cruel is that???). We live in the Albany area.

I've been doing the majority of my shopping at the Latham Farms Hannaford, the Latham Price Chopper and the Green Grocer in Clifton Park. We also made a trip to Brunswick to Sherry Lynn's Gluten Free Bakery and Cafe on a day off, which was very nice.

I was encouraged to see the Times Union has a gluten-free blog: Open Original Shared Link It details many of the restaurants and stores in the area that offer gluten-free selections, as well as gluten free recipes.

Up until three weeks ago we ate almost nothing but gluten - admittedly we probably had way too much fast food, pizza, ate out almost every week, and partook quite a bit of Bella Napoli. Since then, we've made the house relatively gluten free (everything except for my Lean Cuisines), bought/registered for new appliances like a new toaster, etc. This diet is a very big adjustment for both of us. :(

If anyone has any suggestions of other grocery stores or restaurants in the Albany area, I'd love to hear them, thanks in advance!

  • 3 months later...
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*lee-lee* Enthusiast
*lee-lee*
Posted

i currently live in the Saratoga/Glens Falls area but am moving to Binghamton at the end of the month. My blood tests just came back positive and i'm awaiting scheduling for the biopsy.

i have a couple of questions...

thecookingnerd:

do you have a particular doctor in Binghamton that you see? I'm looking for both a primary care doctor and a GI or someone who specializes in or at least has some knowledge of Celiac.

i stopped gluten for 8 days while waiting for my blood work to come back - i just got results last night and was told i have to start again for the biopsy. the doctor didn't specify how much i would have began to heal in 8 days and just said to start eating gluten again so i'm wondering if i have to wait a certain time before i have the biopsy so as not to skew the results? I am really pushing to get it done before the end of the month so it will be covered under my current insurance but i don't want to do it if the results may not be accurate.

I'm pretty excited to go to Wegmans and see all the gluten-free foods they have!

  • 11 months later...
kcb3279 Newbie
kcb3279
Posted

Hi. Yes I live in the Albany area. :)

kcb3279 Newbie
kcb3279
Posted
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.

Dr Richard Eglow is in Troy, Ny and he is great!

  • 1 month later...
LkGrgGrrl Newbie
LkGrgGrrl
Posted
Hi I live in the Albany, Area, if I can be of any help, please don't hesitate to contact me.

Hi, I'm new to the Albany area and still trying to find a GI Doc that is very knowledgeable about Celiac. Can you recommend any?

LkGrgGrrl Newbie
LkGrgGrrl
Posted
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!

The blood tests can be "inconclusive" because the test looks for antibodies and the antibody level is strictly related to gluten consumption for that date. If I go a week without eating gluten my antibodies drop like a hot rock. There is no bacteria or virus to check so an elevated antibody level can only point your doctor towards Celiac.

However, the only true test is the Endoscopy. It takes much longer for damage to the digestive system to repair itself. EGD will show a doctor if those antibodies have flattened the villi in the Digestive System - a sure sign of Celiac. Tell your sister to demand an EGD and threaten to find a new doctor. Its terrible that in this day and age, we have to be our own advocates and push the doctors in the right direction.

  • 3 weeks later...
sweetforyounow Newbie
sweetforyounow
Posted
Anyone live in the Albany area? I have not met another celiac here and sometime I feel so alone.

Hi there! I'm not in Albany but fairly close. I'm in Syracuse and haven't met anyone with our problem either.

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  • 2 weeks later...
gfny66 Newbie
gfny66
Posted

i live in albany, ny and have been attempting to go gluten free for just over a week, though i've definitely made mistakes. i've had fatigue/depression/weight issues for about 10 years that began around the same time as a digestion issue which seemed to resolve itself. the past 4 years have been especially bad and a couple of times since late last year i've been physically ill with headache, sore throat, and body aches for no apparent reason other than maybe stress. the first time i was sick, i had bloodwork done. including testing for lyme disease, and the doctor said everything was normal. after the most recent illness, i went to a naturopathic doctor who had me do more bloodwork (still waiting on results) and suggested i try going off gluten for a month.

in some ways it isn't as difficult as i expected since there are a lot of products available that are labeled gluten free and some restaurants are knowledgeable and accommodating or even have gluten free menus. on the other hand, reading ingredient labels can also be overwhelming and some people have no idea what i'm talking about and don't seem to want to help.

i haven't felt like myself for a long time and am optimistic about something new that could help me feel better. i'm going to do the best i can this month and see if it makes a difference. what i'm trying to figure out is if it's just gluten sensitivity rather than celiac, do i still have to be as worried about contamination? i bought 'living gluten-free for dummies' to try to get a handle on all of this. i'd appreciate guidance from those who have been dealing with this and it would be great to hear from albany-area people with local advice.

  • 9 months later...
Eliza82 Apprentice
Eliza82
Posted

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

Hi - i'm in Southern Vermont too! Near Bennington! Its hard to find restuarants around here that have options but Hannaford has a lot of good choices.

  • 1 month later...
Rizz Newbie
Rizz
Posted

Newburgh NY, luckily I have a Hannafords and a pretty good health food store (natures Pantry) with a nice sized gluten-free section.

  • 4 weeks later...
Jen13 Newbie
Jen13
Posted

Rochester, NY not to far from Albany.. about 4 hours. My boyfriend is from Albany and we go up there alot. Dont hesitate to ask if you need anything!

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    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      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
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      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
      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
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