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Pain


Crimson58

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Crimson58 Newbie

I'm new here. I was diagnosed with Celiac (nontropical sprue) in 2008 after a colonoscopy. I have tried every bit of advice given by a gastroenterologist,not to mention my family doctor. Spent a small fortune on gluten free products in stores. Seems I can go for 4-6 weeks without any flareups,then it hits me again. The damn pain is unbearable. I am also prone to getting diverticulitis,so my doctor always has a CT done to rule out that,since the pain is similar in nature in the same areas. I was prescribed hydrocodone one time for the pain. It barely helped for about 2-3 hours,then it returned. Once it leaves,I'm good for a month or two.I can't deal with it anymore. Any suggestions here how to stop an attack.Is there something over the counter all natural I can buy? Is there even a surgery for this? I would do it in a heartbeat.TIA for any advice


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T.H. Community Regular

Honestly, my best, completely uneducated guess would be you are getting gluten contamination when things go bad. If that's the case, there's not much you can do to stop an attack except get really, really careful.

IF it's gluten? There's no surgery, nothing to do but make sure you avoid all gluten, although I have heard some people have some minor relief from daily doses of aloe vera juice after they get glutened, if they are prone to severe abdominal pain. Just for a week or so, if I recall right.

It didn't help completely, but it seemed to make the pain go away faster, in the people I know who recommended this to me. I have seen this stuff at health food stores and Whole Foods, in their supplements section.

Re: potential gluten - how many gluten-free products do you eat on a daily basis, would you say? Because they are not actually zero gluten, the small amounts of gluten in gluten-free products can sometimes add up, if you are eating enough of them, and you get glutened anyway, even though you are sticking to the diet.

Dropping the processed foods down to a minimum can help if this is an issue.

What other things do you do to help avoid gluten cross-contamination? What do you usually eat? If you give some details, I'm sure that some here can help point out any potential risk areas and maybe help you finally not have to go through this anymore.

Wishing you good luck!

shauna

peacequeen Newbie

I posted a comment on this by mistake, so I deleted it. I'm new here..so sorry!

Crimson58 Newbie

Honestly, my best, completely uneducated guess would be you are getting gluten contamination when things go bad. If that's the case, there's not much you can do to stop an attack except get really, really careful.

IF it's gluten? There's no surgery, nothing to do but make sure you avoid all gluten, although I have heard some people have some minor relief from daily doses of aloe vera juice after they get glutened, if they are prone to severe abdominal pain. Just for a week or so, if I recall right.

It didn't help completely, but it seemed to make the pain go away faster, in the people I know who recommended this to me. I have seen this stuff at health food stores and Whole Foods, in their supplements section.

Re: potential gluten - how many gluten-free products do you eat on a daily basis, would you say? Because they are not actually zero gluten, the small amounts of gluten in gluten-free products can sometimes add up, if you are eating enough of them, and you get glutened anyway, even though you are sticking to the diet.

Dropping the processed foods down to a minimum can help if this is an issue.

What other things do you do to help avoid gluten cross-contamination? What do you usually eat? If you give some details, I'm sure that some here can help point out any potential risk areas and maybe help you finally not have to go through this anymore.

Wishing you good luck!

shauna

I usually stay on a protein diet,mostly white meat chicken. Turkey,Ham,nothing fried of course. I do eat Gluten free bread,and cereal as well.My problem is,I work in the Gulf of Mexico,and don't see land for weeks.So,I have to take some items with me because once we are offshore,I have to eat what is available on the boat.But that is usually mostly chicken,pork,turkey. Also,I usually eat 3-4 small portions a day,as opposed to anything big due to colon issues. The gluten free items I buy,I would say I use only once daily,sometimes twice,then some days not at all. I just had a CT last week because I feared I might have diverticulitis again. I did not,it was the celiac. Swelling,vomiting,bloting,and immense abdominal pain. I will say though,it seems to attack more when I am home from my job than on the job,possibly due to eating more portions,I can't say. I was not even aware there was gluten in shampoos till I starting researching it more. At any rate,it renders me almost helpless until it passes,which is 24-48 hours on average. Thank you for your response.I'll be outa range for a while,but feel free to reply if you come up with any more possible solutions.Have a nice day!

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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.
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