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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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    • knitty kitty
      Thanks, @trents, lactose intolerance is different than a reaction to casein.  Consuming casein could be causing that continuing antibody reaction causing localized inflammation.  Still worth trying a diet without it. Since you mentioned your father passing, you may want to add Benfotiamine.  Benfotiamine is a form of thiamine Vitamin B 1 that has been shown to improve intestinal health.  Tryptophan is helpful, too.  Tryptophan is derived from Niacin Vitamin B 3, and helps repair the intestinal tract.  Tryptophan works well with the amino acid Theanine.  So all three help immensely.   We need additional thiamine when we're emotionally stressed, physically ill and exercise a lot  or do physical labor.  The brain uses the most thiamine of any organ, twenty percent of intake!   What's your fruity probiotic?
    • trents
      @pilber309, as knittykitty pointed out, lactose intolerance is not the only issue with dairy in celiac community. Lactose intolerance has to do with the sugar component of dairy, lactose. However, some celiacs react to a protein fraction in dairy, namely, casein, like they do gluten.
    • pilber309
      Stop eating oats as it did give me irritation.The only diffrent thing i have been consuming are a new probitics which seem to have a fruit ive never heard of as a prebiotic
    • cristiana
      It could well be a new intolerance developing.  Does your diet incorporate pure oats i.e. those safe for coeliac consumption?  I find I can only tolerate a certain amount, same goes for dairy in fact, then I start to get gastric symptoms.   Or have you started consuming a new type of gluten-free bread, or more gluten-free bread than normal, that might contain oats?  I remember reading a post on this forum from a woman who had started to eat a lot of loaves made with oat flour and her coeliac symptoms kicked off again.  I am sure you know this, but some coeliacs cannot tolerate pure oats.
    • pilber309
      I eat a lot of dairy but its intermittent is this burning so I would assume it would happen all the time. Plus I have been tested for lactose intolerance  etc and I am fine and the other symptoms of that I don't get. As a aside  my dad died last month after a long illness so I wonder if the stress of that might be a influence as a bodily reaction to stress.
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