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Hi All


scoobydoobydoo

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scoobydoobydoo Newbie

hi everyone, i just registered today and thought i would introduce myself and give a little background on my condition. i would really love to hear any advice you may have, as i have not been officially diagnosed and do not go to the doctor very often due to a bad health insurance situation. ok here goes:

i started having stomach problems when i was about 14, basically aches pains, nausea, burning and rumbling. at the time i lived in france and went to the doctor regularly, and for years these complaints were dismissed as "stress" "stomach acidity" "female problems" (lol) etc etc.

so i learned to live with them, took a lot of antacids and ate small meals often because i believed that an empty stomach was the cause of the pain. it was annoying, but bearable. french food is based on bread and other wheat products, so i was basically consuming gluten for breakfast lunch and dinner.

then all hell broke loose last year... the pain was so bad that i couldnt bring myself to eat more than two or three small bowls of food per day, in order to try and get proper nutrition i was eating cliff bars and other energy bars with vitamin/mineral additions (and tons of gluten) my stomach was so badly swollen i looked borderline pregnant, i missed lots of classes and to make matters worse i was farting up a storm!! definately not my best semester, lol.

then by chance i did not eat any wheat products for three or four days in a row and felt a remarkable difference, untill i got a bagel at the cafeteria and almost immediately after eating it the nausea, swelling and burning came back. this is how i "diagnosed myself" and have been gluten free since (about 4 months) my stomach is back down to normal size and all my symptoms have radically improved. i accidentally glutened myself twice and suffered the consequences so i am relatively sure that i have celiac disease or some other form of gluten intolerance.

thanks so much to anyone who has read this far! i realize that this is probably not the most interesting topic on the site but please bear with me: i am gradually eliminating anything that contains "natural and artificial flavors" from my diet, as i realize that i should be stricter about not consuming gluten. this is a pain in the ass! do you know of any place i could find a list of "normal foods" that dont contain gluten? (i saw one, but i had to pay a membership and i am too broke for that) anybody here a fan of cream soda? know a brand that does not contain gluten?

also, i live with my dad who cant seem to grasp the importance of avoiding cross contamination... anybody in a similar situation? how do i get it though his skull? i am considering buying plastic tubs in which i will keep all my food but that does not solve the problem of cookware, countertops, silverware, etc.

any other advice is welcome!! have a nice day!


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happygirl Collaborator

Welcome!

Here is some info that may be helpful to you as you get started - makes label reading much easier, and you won't have to worry as much about hidden gluten:

Unsafe ingredients: https://www.celiac.com/articles/182/1/Unsaf...ents/Page1.html

Safe ingredients: https://www.celiac.com/articles/181/1/Safe-...ents/Page1.html

A list of companies that has a clear gluten policy. If you don't see "wheat, rye, barley, barley malt, oats" on the labels, its not there, or hidden in "flavors, starches, etc." Open Original Shared Link and Open Original Shared Link This makes shopping MUCH easier.

FDA foods are required to list wheat - it cannot be hidden.

Rule #1: Never eat anything without reading the label first.

Rule #2: Consistently check labels, even of your favorite products, as product formulations can change.

Rule #3: If you are unsure of an ingredient, or the company's policy on labeling, call the phone number on the back of the product or email the company.

Great info to get you started: Open Original Shared Link

scoobydoobydoo Newbie

thank you :) :)

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    • Rogol72
      Hey @Butch68, I also have dermatitis herpetiformis but don't suffer from it anymore. I used to drink Guinness too but I drink Cider now when out on social occasions. I assume you are in Ireland or the UK. If it's any good to you ... 9 White Deer based in Cork brew a range of gluten-free products including a gluten-free Stout. I'm not sure if they are certified though. https://www.9whitedeer.ie/ I haven't come across any certified gluten-free stouts this side of the pond.
    • 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.
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