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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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  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
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    2. NanceK
      - NanceK replied to Jmartes71's topic in Related Issues & Disorders
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      Is this celiac?

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      - trents replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      Is this celiac?

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  • Posts

    • knitty kitty
      My only proof

      By knitty kitty · Posted

      Hello, @NanceK, I'm glad you're willing to give Benfotiamine with B Complex another go!  I'm certain you'll feel much better.   Yes, supplementation is a good idea even if you're healing and gluten free.  The gluten free diet can be low in B vitamins and other nutrients. A nutritionist can help guide you to a nutrient dense diet, but food sensitivities and food preferences can limit choices.  I can't consume fish and shellfish due to the sulfa hypersensitivity and iodine content, and dairy is out as well.  I react to casein, the protein in dairy, as well as the iodine in dairy.  My Dermatitis Herpetiformis is aggravated by iodine.   Blood tests for B vitamin levels are notoriously inaccurate.  You can have deficiency symptoms before blood levels change to show a deficiency.  I had subclinical vitamin deficiencies for years which affected my health, leading to a slow downward spiral.  Because the B vitamins are water soluble, they are easily excreted in urine if not needed.  It's better to have it and not need it than need it and not have it.   Wheat and other gluten containing grain products have vitamins and minerals added to them to replace those nutrients lost in processing.  Manufacturers add cheap vitamins that our bodies don't absorb or utilize well.  Even normal people can suffer from vitamin deficiencies.  The rise in obesity can be caused by High Calorie Malnutrition, where people eat more carbohydrate calories but don't get sufficient thiamine and B vitamins to turn the calories into energy.  The calories are stored as fat in an effort to ration out diminishing thiamine  stores.    It's time to buy your own vitamins in forms like Benfotiamine that our bodies can use well.   Not sleeping well and fatigue are symptoms of Thiamine deficiency.   I'm certain Benfotiamine with a B Complex will help you immensely.  Just don't take them at night since B vitamins provide lots of energy, you can become too energetic to sleep.  Better to take them earlier in your day.   Do keep me posted on your progress!
    • NanceK
      My only proof

      By NanceK · Posted

      Oh wow! Thanks for this information! I’m going to try the Benfotiamine again and will also add a B-complex to my supplements. Presently, I just take sublingual B12 (methylcobalomin). Is supplementation for celiacs always necessary even though you remain gluten-free and you’re healing as shown on endoscopy? I also take D3, mag glycinate, and try to get calcium through diet. I am trying to bump up my energy level because I don’t sleep very well and feel fatigued quite often. I’m now hopeful that adding the Benfotiamine and B-complex will help. I really appreciate your explanation and advice! Thanks again Knitty Kitty!
    • knitty kitty
      Is this celiac?

      By knitty kitty · Posted

      @Hmart, The reason why your intestinal damage was so severe, yet your tTg IgA was so minimal can be due to cutting back on gluten (and food in general) due to worsening symptoms.  The tTg IgA antibodies are made in the intestines.  While three grams of gluten per day for several weeks are enough to cause gastrointestinal symptoms, ten grams of gluten per day for for several weeks are required to provoke sufficient antibody production so that the antibodies move out of the intestines and into the blood stream where they can be measured in blood tests.  Since you reduced your gluten consumption before testing, the antibody production went down and did not leave the intestines, hence lower than expected tTg IgA.   Still having abdominal pain and other symptoms this far out is indicative of nutritional deficiencies.  With such a severely damaged small intestine, you are not absorbing sufficient nutrients, especially Thiamine Vitamin B 1, so your body us burning stored fat and even breaking down muscle to fuel your body.   Yes, it is a very good idea to supplement with vitamins and minerals during healing.  The eight essential B vitamins are water soluble and easily lost with diarrhea.  The B vitamins all work together interconnectedly, and should be supplemented together.  Taking vitamin supplements provides your body with greater opportunity to absorb them.  Thiamine and the other B vitamins cannot be stored for long, so they must be replenished every day.  Thiamine tends to become depleted first which leads to Gastrointestinal Beriberi, a condition that doctors frequently fail to recognize.  Symptoms of Gastrointestinal Beriberi are abdominal pain and nausea, but neuropathy can also occur, as well as body and joint pain, headaches and more.  Heart rhythm disruptions including tachycardia are classic symptoms of thiamine deficiency.  Heart attack patients are routinely administered thiamine now.   Blood tests for vitamins are notoriously inaccurate.  You can have "normal" blood levels, while tissues and organs are depleted.  Such is the case with Gastrointestinal Beriberi, a thiamine deficiency in the digestive tract.  Eating a diet high in carbohydrates, like rice, starches, and sugar, can further deplete thiamine.  The more carbohydrates one eats, the more thiamine is required per calorie to turn carbs into energy.  Burning stored fats require less thiamine, so in times of thiamine shortage, the body burns fat and muscles instead.  Muscle wasting is a classic symptoms of thiamine deficiency.  A high carbohydrate diet may also promote SIBO and/or Candida infection which can also add to symptoms.  Thiamine is required to keep SIBO and Candida in check.   Thiamine works with Pyridoxine B 6, so if Thiamine is low and can't interact with Pyridoxine, the unused B 6 accumulates and shows up as high.   Look into the Autoimmune Protocol diet.  Dr. Sarah Ballantyne is a Celiac herself.  Her book "The Paleo Approach" has been most helpful to me.  Following the AIP diet made a huge improvement in my symptoms.  Between the AIP diet and correcting nutritional deficiencies, I felt much better after a long struggle with not feeling well.   Do talk to your doctor about Gastrointestinal Beriberi.  Share the article linked below. Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Keep us posted on your progress!
    • Trish G
      Fiber Supplement

      By Trish G · Posted

      Thanks, that's a great addition that I hadn't thought of. 
    • trents
      Is this celiac?

      By trents · Posted

      Other diseases, medical conditions, medications and even (for some people) some non-gluten foods can cause villous atrophy. There is also something called refractory celiac disease but it is pretty uncommon.
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