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

sparksun

By sparksun
in Coping with Celiac Disease

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sparksun Newbie
sparksun
Posted

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
mushroom
Posted

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
Lisa
Posted

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
shadowicewolf
Posted

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
sparksun
Posted
  • Author

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

kristenloeh Community Regular
kristenloeh
Posted

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
foam
Posted

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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    • trents
      Test interpretations

      By trents · Posted

      Possibly. Your total IGA (Immunoglobulin A, Qn, Serum) is actually high so you are not IGA deficient. In the absence of IGA deficiency, the most reliable celiac antibody test would be the t-Transglutaminase (tTG) IgA for which your score is within normal range. There are other things besides celiac disease that might cause an elevated DGP-IGA (Deamidated Gliadin Abs, lgA) for which you do have a positive score. It might also be of concern that your total IGA is elevated as that can indicate some other health problems, some of which are serious.  Had you been practicing a gluten free or a reduced gluten free diet prior to the blood draw? Talk to your physician about these things. I would also seek an endoscopy/biopsy of the small bowel to check for damage to the villous lining, which is the gold standard diagnostic test for celiac disease.
    • MicG
      Test interpretations

      By MicG · Posted

      Test results as follows: Deamidated Gliadin Abs, lgA 40 H (normal range 0-19) Deamidated Gliadin Abs, IgG 4 (0-19) t-Transglutaminase (tTG) IgA <2 (0-3) t-Transglutaminase (tTG) IgG <2 (0-5) Endomysial Antibody IgA Negative (Negative) Immunoglobulin A, Qn, Serum 535 H (87-352) Do I have celiac?
    • catnapt
      how long does it take for the genetic blood test for celiac to come back?

      By catnapt · Posted

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