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Anyone Else Tired Of "celiac" Vs "gluten Sensitive"?

mhb

By mhb
in Related Issues & Disorders

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Mother of Jibril Enthusiast
Mother of Jibril
Posted

I had another thought about the genetic issue...

How about if we compare celiac disease to breast cancer for a moment?

Like celiac, there is a gene that increases your risk of developing breast cancer (BRCA1). However, not everyone who has this gene gets breast cancer... and not everyone who gets breast cancer has the gene. There are lots of other factors involved: exposure to environmental contaminants, diet, the balance of hormones in your body (birth control pills and HRT increase your risk), etc... What makes breast cancer so different from celiac disease is that the prevention and treatment are very different. Prevention involves eating a good diet, mammograms, breastfeeding, avoiding exposure to chemicals like dry cleaning solvents, etc... Treatment involves surgery, chemotherapy, and/or radiation... so it really matters if you have active breast cancer or not!

With celiac disease, prevention and treatment are the same... don't eat gluten.

Western medicine is VERY much built on the breast cancer model... identify diseases and treat them aggressively with drugs, surgery, etc... People with severe celiac disease are in a similar crisis and need aggressive treatment, but everyone else is on the "prevention" side of things... which is not the strong suit of Western medicine. No wonder so many people don't understand gluten intolerance or even celiac disease! If you have a first-degree relative with celiac or you know you have one of the genes, you should either stop eating gluten or commit to screening on a regular basis.

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      Have Tru Joy Sweets Choco Chews been discontinued??

      By Scott Adams · Posted

      Some of the Cocomels are gluten and dairy-free: https://cocomels.com/collections/shop-page
    • Scott Adams
      Doctors and Celiac.com

      By Scott Adams · Posted

      Thank you for the kind words! I keep thinking that things in the medical community are improving, but a shocking number of people still post here who have already discovered gluten is their issue, and their doctors ordered a blood test and/or endoscopy for celiac disease, yet never mentioned that the protocol for such screening requires them to be eating gluten daily for weeks beforehand. Many have already gone gluten-free during their pre-screening period, thus their test results end up false negative, leaving them confused and sometimes untreated. It is sad that so few doctors attended your workshops, but it doesn't surprise me. It seems like the protocols for any type of screening should just pop up on their computer screens whenever any type of medical test is ordered, not just for celiac disease--such basic technological solutions could actually educate those in the medical community over time.
    • trents
      how much gluten do I need to eat before blood tests?

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      The rate of damage to the villous lining of the SB and the corresponding loss of nutrient absorbing efficiency varies tremendously from celiac to celiac. Yes, probably is dose dependent if, by dose dependent you mean the amount of exposure to gluten. But damage rates and level of sensitivity also seem to depend on the genetic profile. Those with both genes HLA-DQ2 and HLA-DQ8 seem to be more sensitive to minor amounts of gluten exposure than those with just one of those genes and those with only DQ2 seem to be more sensitive than those with only DQ8. But there are probably many factors that influence the damage rate to the villi as well as intensity of reaction to exposure. There is still a lot we don't know. One of the gray areas is in regard to those who are "silent" celiacs, i.e. those who seem to be asymptomatic or whose symptoms are so minor that they don't garner attention. When they get a small exposure (such as happens in cross contamination) and have no symptoms does that equate to no inflammation? We don't necessarily know. The "sensitive" celiac knows without a doubt, however, when they get exposure from cross contamination and the helps them know better what food products to avoid.
    • MauraBue
      Have Tru Joy Sweets Choco Chews been discontinued??

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      Help!  My 5 year old daughter just stopped eating dairy and gluten due to her EoE and Celiac.  Her favorite candy in the world is tootsie rolls.  I did some research, and it sounds like these are the only options for finding something similar, but I can't find them anywhere to actually purchase.  Have they been discontinued??  Does anyone have another recommendation for a gluten-free/DF tootsie roll option?
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      I wonder how long it usually takes and if it is dose dependent as well... or if some ppl have a more pronounced reaction to gluten than others   thanks again for all the great info    
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