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My Brother Has Celiacs, Too.


MySuicidalTurtle

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MySuicidalTurtle Enthusiast

So, my brother, Matthew, started getting ill like I used to be a few weeks ago. Of course when he went to our doctor she said go on a gluten-free diet and we will do tests. The call cam today and he has it. It's a bit weird but it's good to know what's wrong. I told him he should check this place out so I think he will register and all that jazz.

Kristina


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Guest jhmom

Kristina:

Awww man, I hate to hear that! At least you know he likes some of the gluten-free food, eh?

burdee Enthusiast

Hey Kristina: Now you have to share ALL your gluten-free homebaked cookies with your brother. :o Maybe the gluten-free diet will help his ADHD symptoms. That's very logical that your brother would have celiac disease, since it's a hereditary disease. Do either of your parents have symptoms? Wouldn't it be ironic, if your dad who won't touch your gluten-free homemade cookies, tested positive for celiac disease. :lol: I can't wait to tell my husband (who's had lifelong ADHD and insists he can eat ANYTHING) about your brother's diagnosis. Fortunately, my husband loves ENER-G Foods gluten-free breads and cookies. I sure would like to get him on a gluten-free diet to help his ADHD symptoms. ;)

BURDEE

celiac3270 Collaborator

How's he taking it? Anyway, welcome to the board, Matthew!.........hope the diet helps with his symptoms.

MySuicidalTurtle Enthusiast

I don't wanna share!

Yea, we'll see how the diet works for him.

He'll probably post here since he eats different food than me and I don't know about them.

GEF Explorer

Not that anyone would want someone to be celiac, but it's good that he's found out so early.

Even though you might eat different things... you might be of great support for each other throughout life.

Gretchen

Kathy-W Newbie

Hi all. My name is Kathleen. I love this site and the forums that I have read so far. My twin sister has celiac disease really bad and is on a glutan free diet and has been on one for several years. This is weird, but I have SLE (Systemic Lupus Erythmetosis). Anyway for years I have had this horrible blistery itchy nasty rash on the palms of my hands and fingers and on the bottems of my feet and between my toes and on my toes. I have serious bathroom problems for example terrible bouts of diarrhea and gas etc. It is really bad for sure. She lives in Florida and I live in Georgia and she came up for a visit. She talked with me about my problems that I am having and the several trips to the doctor that sees me for my Lupus. She told me that I should be tested immediately for glutan intolerance since we are twins and I most likely have celiac disease. Well it turns out that I do definitely have it and have to go on a gluten-free diet. I am very new and this is really hard. She had been trying to tell me for several years and I unfortunately would not listen until it became very severe. When I told her the news she said see I have been telling your for years that you may have celiac disease and you would not listen to me. I guess I was in a terrible state of denial, because man I love cookies, cakes, breads etc. Thanks for letting me share. I am going to check out the recipes in this site and buy me a bread making machine. Feel free to email me if you like.

Kathleen W.


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burdee Enthusiast

Kathleen: There are MANY gluten free bakeries/retailers which produce a WIDE variety of great gluten free breads, muffins, bagels, cookies, cakes, pastas, etc. So you don't have to bake your own bread, unless you really enjoy that. I personally like Food for Life breads and almost anything from Ener-G Foods which is my local Seattle-based gluten-free bakery retailer. I'm not that familiar with this website, but I believe they list gluten free retailers somewhere here. If you try a gluten-free bread or cooky and don't like it, try another variety or brand. There are enough different brands and varieties to suit all kinds of gluten free tastes, that you are certain to find something if you keep looking. Ener-G Foods sells a bread sampler package with 2 slice packages of many of the breads they make. Perhaps other companies do something similar. Good luck with gluten sleuthing. ;)

BURDEE

  • 3 years later...
prettyXmuchXrad Newbie

My little brother got diagnosed a few months before I did. It's nice to have somebody close that understands!

Daughter-of-TheLight Apprentice

My little bro has it too... And he eats my chocolate dounuts... <_< kinda annoying... He's not on here. Or I would be hiding from shame.

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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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