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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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    • 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!
    • Scott Adams
      Bob red mill gluten free oats

      By Scott Adams · Posted

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      High TTG-IgG and Normal TTG-IgA

      By knitty kitty · Posted

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease.   Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease.  Though having the genes for Celiac is not diagnostic in and of itself, taken with the antibody tests, the anemia and your reaction to gluten, it may be a confirmation you have Celiac disease.   Do discuss Gastrointestinal Beriberi with your doctors.  In Celiac disease, Gastrointestinal Beriberi is frequently overlooked by doctors.  The digestive system can be affected by localized Thiamine deficiency which causes symptoms consistent with yours.  Correction of nutritional deficiencies quickly is beneficial.  Benfotiamine, a form of thiamine, helps improve intestinal health.  All eight B vitamins, including Thiamine (Benfotiamine), should be supplemented because they all work together.   The B vitamins are needed in addition to iron to correct anemia.   Hope this helps!  Keep us posted on your progress!
    • trents
      High TTG-IgG and Normal TTG-IgA

      By trents · Posted

      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining of the small bowel which generates specific kinds of antibodies. Some people are IGA deficient and such that the IGA antibody tests done for celiac disease will have skewed results and cannot be trusted. In that case, there are IGG tests that can be ordered though, they aren't quite as specific for celiac disease as the IGA tests. But the possibility of IGA deficiency is why a "total IGA" test should always be ordered along with the TTG-IGA. The other modality is an endoscopy (scoping of the upper GI track) with a biopsy of the small bowel lining. The aforementioned autoimmune response produces inflammation in the small bowel lining which, over time, damages the structure of the lining. The biopsy is sent to a lab and microscopically analyzed for signs of this damage. If the damage is severe enough, it can often be spotted during the scoping itself. The endoscopy/biopsy is used as confirmation when the antibody results are positive, since there is a small chance that elevated antibody test scores can be caused by things other than celiac disease, particularly when the antibody test numbers are not particularly high. If the antibody test numbers are 10x normal or higher, physicians will sometimes declare an official diagnosis of celiac disease without an endoscopy/biopsy, particularly in the U.K. Some practitioners use stool tests to detect celiac disease but this modality is not widely recognized in the medical community as valid. Both celiac testing modalities outlined above require that you have been consuming generous amounts of gluten for weeks/months ahead of time. Many people make the mistake of experimenting with the gluten free diet or even reducing their gluten intake prior to testing. By doing so, they invalidate the testing because antibodies stop being produced, disappear from the blood and the lining of the small bowel begins to heal. So, then they are stuck in no man's land, wondering if they have celiac disease or NCGS. To resume gluten consumption, i.e., to undertake a "gluten challenge" is out of the question because their reaction to gluten is so strong that it would endanger their health. The lining of the small bowel is the place where all of the nutrition in the food we consume is absorbed. This lining is made up of billions of microscopically tiny fingerlike projections that create a tremendous nutrient absorption surface area. The inflammation caused by celiac disease wears down these fingers and greatly reduces the surface area needed for nutrient absorption. Thus, people with celiac disease often develop iron deficiency anemia and a host of other vitamin and mineral deficiencies. It is likely that many more people who have issues with gluten suffer from NCGS than from celiac disease. We actually know much more about the mechanism of celiac disease than we do about NCGS but some experts believe NCGS can transition into celiac disease.
    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
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