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No E Mass / So Nh - Support Groups ?


lpjourney

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lpjourney Rookie

I'm in Chelmsford - I'm wondering if there are any support groups in this area?

Just officially diagnosed with Celiac, have wondered if I might be for a while - no real major symptons - just accaisonal ones, my mother has been dealing with it for about 17 years. I also was started on Type 2 Diabetes oral medication to help keep the blood sugar down and not progress to higher levels. My research has only shown links to Type 1. I requested that my PC doctor run the antibody tests to rule out Celiac - which lead me to be further tested by endoscopy biopsy. So this is my new journey for life.


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munkee41182 Explorer

Hey neighbor!!!! I'm actually in Lowell. As far as I know there really aren't any support groups in this area...but there are some in Newton I believe. I have to go digging through old emails to find it though :-)

lpjourney Rookie

Hi Jami - I'm Liisa - I know there are more people in the area that are dealing with Celiac - maybe it's time to start one around here. But I wouldn't know the first thing about how to go about doing so.

I'd like to get an idea of those that might be interested in participating.

If anyone has any ideas, suggestions, where to get material to share, etc.....

thanks in advance

Laurossi Newbie

Hi

I am in Bedford. Diagnosed with Celiac 4 years ago by Dr Catherine Cheney of Beth Israel. I am interested in starting a local group.

Lets all put our heads together,

Laura

  • 9 years later...
John B. Newbie

hello everyone I am john and I was just diagnosed with celiac. Is there any local support groups in or around the Billerica area I can join and find out more about it.

GFinDC Veteran
7 hours ago, John B. said:

hello everyone I am john and I was just diagnosed with celiac. Is there any local support groups in or around the Billerica area I can join and find out more about it.

Welcome to the forum John! :)

Try this search:

Open Original Shared Link

Also, we have a "newbie 101" thread for getting started in the Coping With forum section.  This forum is a great place to get information on what to eat and other things that can help.  Think whole foods rather than processed foods.  Foods you cook from scratch yourself are best.  That way you know what's in the food.  Dairy can cause problems for the first several months until some healing happens.  There are lots of gluten-free foods and restaurants now.  But it's best to stick with meats, veggies, nuts and fruits for awhile.  No eating out for 6 months or so.  For a bread sub Mission brand corn tortillas are good and Aldi makes some good gluten-free wraps.  Some people like rice cakes also.  Gluten-free breads are available but should be avoided until you have got some months under your belt.

Cross-contamination can happen when somebody uses a knife or spoon to get peanut butter or some condiment out and then you use the same jar of peanut butter.  Little crumbs do matter to the immune system and it will react, sometimes for months.  So if you are sharing such items with others who aren't gluten-free you need to stop.  Wooden spoons and dishes are too difficult to clean adequately.  Metal is usually fine though.

It's all a steep learning curve at first but it gets easier in time.  We can help you over the rough spots.  We've hit a few of them ourselves.

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      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
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      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
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      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
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