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Been googling and now paranoid


Lauraclay

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Lauraclay Rookie

Hi Everyone, I've been googling and I'm really worried that I'm going to develop lymphoma 😩 I have health anxiety anyway but would really appreciate somebody's thoughts on this, I'm worried that I have it as I'm still getting diarrhea.


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Spherical Bird Contributor
19 hours ago, Lauraclay said:

Hi Everyone, I've been googling and I'm really worried that I'm going to develop lymphoma 😩 I have health anxiety anyway but would really appreciate somebody's thoughts on this, I'm worried that I have it as I'm still getting diarrhea.

Hi Lauraclay, don't worry too much; I saw from your profile that you were recently diagnosed with celiac. If that can help, know that even if you stopped eating gluten, chances are you may have other conditions such are other intolerances. This could explain your diarrheas; I know I can get them from lactose. Those are symptoms that can coexist with celiac or gluten intolerance.

I'd recommend that, if possible, you take carry around a little booklet or phone notes of your meal and gauge the days where you feel better. An other useful thing to know: avoid additives if that's possible (there's little traceability on these too)

If you struggle too much with all of this, you can also see schedule an appointment with a nutritionist; they might be able to help you to detect your intolerances.

I hope my answer helped a little :)

Scott Adams Grand Master

Welcome to the forum! While it's possible for someone with celiac disease, especially if left untreated, to get lymphoma, it is still highly unlikely. Also, from the studies we've summarized here:
https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/cancer-lymphoma-and-celiac-disease/
the overall risk seems to diminish over time once a celiac goes gluten-free (presumably because the inflammation and autoimmune reaction decreases).

 

MADMOM Community Regular
On 7/23/2021 at 2:24 PM, Scott Adams said:

Welcome to the forum! While it's possible for someone with celiac disease, especially if left untreated, to get lymphoma, it is still highly unlikely. Also, from the studies we've summarized here:
https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/cancer-lymphoma-and-celiac-disease/
the overall risk seems to diminish over time once a celiac goes gluten-free (presumably because the inflammation and autoimmune reaction decreases).

 

i was the same way when first diagnosed - i think i made my GI swear that i won’t get lymphoma - and he promised me that as long as i eat gluten free the chances are highly unlikely - in his 25 years of being a dr he never had a celiac patient get lymphoma once they stopped gluten- in fact eating gluten free can keep you very healthy and less likely of getting other issues as well - try to focus on your diet and stay calm ❤️

Lauraclay Rookie

thank you ❤

seamist Newbie
On 7/23/2021 at 1:10 PM, Spherical Bird said:

Hi Lauraclay, don't worry too much; I saw from your profile that you were recently diagnosed with celiac. If that can help, know that even if you stopped eating gluten, chances are you may have other conditions such are other intolerances. This could explain your diarrheas; I know I can get them from lactose. Those are symptoms that can coexist with celiac or gluten intolerance.

I'd recommend that, if possible, you take carry around a little booklet or phone notes of your meal and gauge the days where you feel better. An other useful thing to know: avoid additives if that's possible (there's little traceability on these too)

If you struggle too much with all of this, you can also see schedule an appointment with a nutritionist; they might be able to help you to detect your intolerances.

I hope my answer helped a little :)

 Myself and many others discovered they were actually still consuming hidden gluten. Although we have labels now, gluten is in foods one may not even think of.   Keeping a food diary as suggested above  can help find the culprit.  soy sauce ( there  are a couple of gluten free choices)  for example seems to be one people are still consuming. ice Cream… etc… 😊

 

maseymn Rookie

I agree with a couple of points above. I'm better when I'm off dairy in addition to gluten, but it's hard so I keep going back and forth on that one. I sometimes have some diarrhea problems while I transition back off of dairy, for some reason. Hidden glutens are big. I had to get rid of my pyrex pans (little pits in the glass can hold gluten), I had to get rid of my cast iron pan and get one that ONLY gets used for gluten free items, (again, pits in iron hold gluten). I have my own pizza cutter, my own pots and pans etc., color coded for my family (my kids when they were growing up knew to not use anything red handled or red colored, that was for gluten free only). Another big thing I ran into was my medicines. I'm on a couple of migraine meds and some thyroid medication, and I have to be careful which brand they use when they fill the prescription. I also have to be careful with over the counter cold medications and pain medications. Good luck -- you'll figure it out. And don't worry about the gastro stuff -- it took years to catch the celiac, it might take a couple of years for your gut to fully heal as well. You'll figure it all out.


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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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    • 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. 
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    • Scott Adams
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