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Oh, Yeah I Got Questions...


NewB

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NewB Newbie

Just "diagnosed" (figured it out myself) after my Dr just kept treating me like a hypochondriac.

So, like jhun I have questions and wonder about the best way of sorting through all this. I am on the West Coast so perhaps there is no one out there right now who can help--but any info is appreciated.

Oh, and i lost my help insurance right after being "diagnosed"

Thanks

Barbara


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Ursa Major Collaborator

Hi Barbara, and welcome to this board.

Here is a link to Nini's website, where you'll find her 'newbie survival kit' by scrolling down to the very bottom. Open Original Shared Link

It has invaluable information on getting started after being diagnosed with celiac disease, and will save you from doing a lot of the research yourself.

NewB Newbie
Hi Barbara, and welcome to this board.

Here is a link to Nini's website, where you'll find her 'newbie survival kit' by scrolling down to the very bottom. Open Original Shared Link

It has invaluable information on getting started after being diagnosed with celiac disease, and will save you from doing a lot of the research yourself.

NewB Newbie

Thank you! I'll look at Nina's now...no one ever gets my jokes... "help" insurance etc...but I am a goose in new world here: Never been in a chat room, never posted antthing on a forum before...just been reading in an online encyclopedia...there is a celiac artery, celiac plexes,celiac ganglia etc etc...I seem to be having "refered pain" from these areas in nerves in my shoulders and hands...

Thanks again!

ArtGirl Enthusiast

Welcome to the forum. This is the best place to learn about gluten intolerance and Celiac disease. You'll be a pro in no time. And then you're going to have to change your member name :P

Namma Newbie
Just "diagnosed" (figured it out myself) after my Dr just kept treating me like a hypochondriac.

So, like jhun I have questions and wonder about the best way of sorting through all this. I am on the West Coast so perhaps there is no one out there right now who can help--but any info is appreciated.

Oh, and i lost my help insurance right after being "diagnosed"

Thanks

Barbara

Barbara,

2 1/2 years ago our granddaughter was dignosed with Celiac. She is now 3 1/2. Her mom is my daughter. My son in law and daughter were tested along with our other granddaughter now 6. I too was tested. My blood work was inconclusively negative. In laymans terms "not sure". I then had a biopsy. ALL CLEAR. But there is alot to be said about a gluten free diet just for the heck of it. We watch our granddaughters and Abbey is so active, alert and has the energy of 3 -3 year olds and her mood is just as precious as can be. I have learned a lot over the last couple of years just reading different periodicals. I also have a friend with twins. One recently diagnosed borderline autistic. It was recommended that he be put on a gluten free diet. His behavioral issues ceased.

My mother at age 48 died of lymphoma in 1981 which is somewhat linked to celiac. That is also why we thought the gene probably was on my side of the family.

I am still contemplating a gluten free diet for myself as I am now menopausal and have heart burn and digestive issues regularly. Although I am on a slight dose of estrogen because of a hysterectomy a couple of years ago, I still have the menopausal stuff to deal with.

My suggestion to you......so you don't have to break the bank buying expensive food, is get on manufactures websites and ask for their gluten free list.

I see on here that there are some who say they don't like the holidays because eating is very limited. It truly is not....DON'T GO DOWN THE PITY PARTY ROAD. For Thanksgiving we have an 85% gluten free meal WITH dessert. Most with just normal stuff to eat. Jennie O turkeys are gluten-free, mashed potatoes gluten-free, Some gravies gluten-free, Fresh Veggies, Fresh Fruit salad, Cranberries, Green Salad, Jello,

Hor d ourves Tostitos and Salsa, shrimp and cocktail sauce, Rice crackers and fruit salsa over cream cheese, bbq sauce and mini weinies, artichoke dip, spinach dip, the only No No was the stuffed mushrooms.

With careful prep and planning no on knows the difference. The first thing my daughter says to me when they arrive MOM WHAT CAN'T ABBEY HAVE?

I too live on the west coast and quite frankly this is the best state to live in with your situation. I shop at Trader Joes, Berkeley Bowl, and Whole Foods. Whole Foods and Trader Joes have a list available of the products they sell that are gluten-free. Wild Oats is great too but I don't have any near me. The closest is Reno.

I realize my situation is very different and I suppose if it were me and not just my granddaughter I'd probably have an attitude.

Hang in there, the way you will start to feel supercedes any deprivation of food.

Just the Namma

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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