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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
      @Hmart, The reason why your intestinal damage was so severe, yet your tTg IgA was so minimal can be due to cutting back on gluten (and food in general) due to worsening symptoms.  The tTg IgA antibodies are made in the intestines.  While three grams of gluten per day for several weeks are enough to cause gastrointestinal symptoms, ten grams of gluten per day for for several weeks are required to provoke sufficient antibody production so that the antibodies move out of the intestines and into the blood stream where they can be measured in blood tests.  Since you reduced your gluten consumption before testing, the antibody production went down and did not leave the intestines, hence lower than expected tTg IgA.   Still having abdominal pain and other symptoms this far out is indicative of nutritional deficiencies.  With such a severely damaged small intestine, you are not absorbing sufficient nutrients, especially Thiamine Vitamin B 1, so your body us burning stored fat and even breaking down muscle to fuel your body.   Yes, it is a very good idea to supplement with vitamins and minerals during healing.  The eight essential B vitamins are water soluble and easily lost with diarrhea.  The B vitamins all work together interconnectedly, and should be supplemented together.  Taking vitamin supplements provides your body with greater opportunity to absorb them.  Thiamine and the other B vitamins cannot be stored for long, so they must be replenished every day.  Thiamine tends to become depleted first which leads to Gastrointestinal Beriberi, a condition that doctors frequently fail to recognize.  Symptoms of Gastrointestinal Beriberi are abdominal pain and nausea, but neuropathy can also occur, as well as body and joint pain, headaches and more.  Heart rhythm disruptions including tachycardia are classic symptoms of thiamine deficiency.  Heart attack patients are routinely administered thiamine now.   Blood tests for vitamins are notoriously inaccurate.  You can have "normal" blood levels, while tissues and organs are depleted.  Such is the case with Gastrointestinal Beriberi, a thiamine deficiency in the digestive tract.  Eating a diet high in carbohydrates, like rice, starches, and sugar, can further deplete thiamine.  The more carbohydrates one eats, the more thiamine is required per calorie to turn carbs into energy.  Burning stored fats require less thiamine, so in times of thiamine shortage, the body burns fat and muscles instead.  Muscle wasting is a classic symptoms of thiamine deficiency.  A high carbohydrate diet may also promote SIBO and/or Candida infection which can also add to symptoms.  Thiamine is required to keep SIBO and Candida in check.   Thiamine works with Pyridoxine B 6, so if Thiamine is low and can't interact with Pyridoxine, the unused B 6 accumulates and shows up as high.   Look into the Autoimmune Protocol diet.  Dr. Sarah Ballantyne is a Celiac herself.  Her book "The Paleo Approach" has been most helpful to me.  Following the AIP diet made a huge improvement in my symptoms.  Between the AIP diet and correcting nutritional deficiencies, I felt much better after a long struggle with not feeling well.   Do talk to your doctor about Gastrointestinal Beriberi.  Share the article linked below. Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Keep us posted on your progress!
    • Trish G
      Thanks, that's a great addition that I hadn't thought of. 
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    • trents
      knitty kitty asks a very relevant question. So many people make the mistake of experimenting with the gluten free diet or even a reduced gluten diet soon before getting formally tested.
    • trents
      Another great fiber option is dried apricots. Four of them give you 3g of fiber and I find they don't produce all the gas that some other high fiber options do. They taste good too. Costco sells a large bag of them that are labeled gluten-free so you don't have to worry about cross contamination issues like you might in bulk grocery settings.
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