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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
      Based on those results alone, it’s not possible to say you have celiac disease. The test that is usually most specific for celiac, tTG-IgA, is negative in your results, and the endomysial antibody (EMA) is also negative, which generally argues against active celiac disease. However, your deamidated gliadin IgA is elevated, and your total IgA level is also high, which can sometimes affect how the other antibody tests behave. Another important factor is that you were reducing gluten before the test, which can lower antibody levels and make the results less reliable. Because of that, many doctors recommend a gluten challenge (eating gluten regularly for several weeks) before repeating blood tests or considering an endoscopy if symptoms and labs raise concern. It would be best to review these results with a gastroenterologist, who can interpret them in context and decide whether further testing is needed.
    • trents
      Since you compromised the validity of the antibody testing by experimenting with gluten withdrawal ahead of the testing, you are faced with two options: 1. Reintroduce significant amounts of gluten into your diet for a period of weeks, i.e., undertake a "gluten challenge". The most recent guidelines are the daily consumption of at least 10g of gluten (about the amount found in 4-6 slices of wheat-based bread) for at least two weeks leading up to the day of testing. Note: I would certainly give it more than two weeks to be sure. 2. Be willing to live with the ambiguity of not knowing whether gluten causes you problems because you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). There is no test for NCGS. Celiac disease must first be ruled out and we have tests for it. Celiac disease has an autoimmune base. NCGS does not. GI symptoms overlap. In the early stages of celiac disease, other body systems may not be showing stress or damage so, symptomatically, it would be difficult to distinguish between celiac disease and NCGS. Both conditions require elimination of gluten from the diet for symptom relief. Some experts feel that NCGS can be a precursor to celiac disease.
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