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Just Diagnosed After 8 Years Of Symptoms - Scared Of Gi Cancer And Lymphoma


sparksun

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sparksun Newbie

After 8 years of being ignored by doc, I finally got my panel and it's official now.

 

I plan to start glutten free diet ASAP however I am scared it's too later and cancer will be knocking at my door since I have been undiagnosis for so long. I'm so scared right now and cant imagine leaving my family.

 

I am 30 and started to have IBS symtoms like bloating, lactose intolerance and loose sometimes greasy stools. I do not experience any pain. However last year I had really bad unexplained Diarrhea. They ran ct scan with constrast and ultrasound and both were normal. However that was 1 year ago. I feel fine now but worried since I have been reading so much content from various studies on the web.


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mushroom Proficient

You have been diagnosed relatively early.  Many posters on here are not diagnosed until their 50's or 60's :)   I do not see or hear cancer knocking at your door - that is for those who ignore the diagnosis and continue on their errant way.  Please do not be scared of cancer.  Now that you are diagnosed any additional risk (and it is not that high in the first place) will drop right back down pretty soon to that of the average population.  But it's okay to let it be a motivator to keep the gluten out of our diet :)

 

Welcome to the board and be sure to ask any questions you may have.  A good place to start your reading is Newbie Info 101   - there is a lot of helpful information in there.  I will come back and give you a link.  Here it is:

 

https://www.celiac.com/forums/forum/5-celiac-disease-coping-with/

Lisa Mentor

Yes and welcome.  I will reiterate everything that Mushroom has said.  There are numberous studies out there that indicate that after diagnosis and a year on the gluten free diet, the percentage of cancerous lymphona is on par with the general population.  (I think they think it might take about a year to perfect the diet - it did with me)

 

No need for further worry and we will guide you to a great diet.  And you will be healthy and happy!!!!  Welcome to the Club Spark!

shadowicewolf Proficient

Increased chance of developing it compared to the rest of the population? Sure.

 

Your risk? Very very low.

 

I had symptoms for about 10 years or so (if not longer).

sparksun Newbie

Thanks everyone for the reassurance. I feel much better now. 

kristenloeh Community Regular

You'll be fine. I was misdiagnosed for 10+ years and I'm fine. I was diagnosed last year, and I recently had all of my blood work checked and all of my levels are normal and healthy already. You will heal faster than you would think. Glad you're on your way to start feeling better!

foam Apprentice

I started to get noticeable gut pain at age 28. By the time I quit gluten at age 37 after 2 years of really ridiculous bloating. By then I had a world of other Immune system problems but no cancer. If all your blood work is still normal then you should heal up just fine. I'm fine now other than the stuffed up immune system (working on that now). I have a large tumour in my neck that looks for all the world like hodgkins and I've had plenty of testing to prove is is NOT. So If I'm not worried about cancer you shouldn't be.


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    • Ginger38
      I refused to do the gluten challenge for a long time because I knew how sick I would be: I have always had and still have positive antibodies and have so many symptoms my  GI was 💯 sure I would have a positive biopsy. I didn’t want to make myself sick to get a negative biopsy and be more confused by all this.  He couldn’t guarantee me a negative biopsy meant no celiac bc there may not be damage yet or it’s possible to miss biopsies where there’s damage but he was so sure and convinced me I needed that biopsy I went back on gluten. It was a terrible experience! I took pictures of the bloating and swelling and weight gain during the challenge. I gained 9 pounds, looked pregnant, was in pain , couldn’t work or function without long naps and the brain fog was debilitating. And in the end he didn’t get a positive biopsy… so I wish I had never wasted my time or health going through it. I haven’t been truly straightened  out since and I am currently battling a shingles infection at 43 and I can’t help but wonder if the stress I put my body under to try and get an official diagnosis has caused all this. Best of luck to you - whatever you decide. It’s not a fun thing to go through and I still don’t have the answers I was looking for 
    • Scott Adams
      It's completely understandable to struggle with the gluten challenge, especially when it impacts your health and studies so significantly. Your experience of feeling dramatically better without gluten is a powerful clue, whether it points to celiac disease or non-celiac gluten sensitivity. It's very wise of you and your doctor to pause the challenge until your holidays, prioritizing your immediate well-being and exams. To answer your questions, yes, it is possible for blood tests to be negative initially and become positive later as the disease progresses, which is why the biopsy remains the gold standard. Many, many people find the gluten challenge incredibly difficult due to the return of debilitating symptoms, so you are certainly not alone in that struggle. Wishing you the best for your exams and for obtaining clearer answers when you're able to proceed.
    • Scott Adams
      It's smart that you're seeing the gastroenterologist tomorrow. While it's possible this is a severe and persistent inflammatory reaction to gluten, the fact that the pain is movement-dependent and localized with tenderness is important for your specialist to hear. It could indeed be significant inflammation, but it's also worth ruling out other overlapping issues that can affect those with celiac disease. Is it possible you got some gluten in your diet somehow? This could be a possible trigger. Hopefully, tomorrow's appointment will provide clearer answers and a path to relief so you can get back to your lectures and enjoy your weekend. Wishing you all the best for the consultation.
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