Need advice regarding diagnosis

[Mononyma]

I am 64 years old and I stopped eating gluten some years ago on the advice of a doctor. 

Years ago I went to a gastroenterologist and asked to be tested for celiac and was embarrassed when she threw back her head and laughed, saying, "fat people can't have celiac disease."  I have been shy about raising the issue with my doctors since.

My brother, no longer living, may have had celiac.  He was born in 1959 and was put on the "banana diet" for the first year or two of his life, because he was not keeping food down and had diarrhea. His teeth came in with lumpy discolored enamel. 

As a child, I always had sores in my mouth -- I thought that was normal.  Later, I had heavy, irregular menses.  I was always anemic, which was attributed to heavy menses.  Around age 30, I developed digestive issues -- the doctor told me it was irritable bowel, but colonoscopies showed inflammation and I was diagnosed with ulcerative colitis. When treatments for ulcerative colitis did not help, my doctor suggested I try a gluten-free diet, something I did not do successfully until some years later.  I have been diagnosed with Hashimoto's Thyroiditis.  I had severe OCD and anxiety throughout my childhood and adulthood --up until I stopped eating gluten.  More recently, I have been diagnosed with multiple sclerosis.

Initially, I tried going gluten-free without success, but I really didn't realize that gluten is in everything.  About ten years ago, I eliminated gluten with more care and knowledge.  It makes an amazing difference -- mouth sores gone, digestive issues gone, joint pain and muscle aches are far less troublesome. And most surprising, OCD is gone too. 

I am sensitive to any amount of gluten.  When I have been "glutened" issues return. So I am careful.  Recent 23andMe DNA testing reveals two copies of a gene associated with Celiac disease, but I see that a large percentage of people have this gene.  I suspect my grown son could have celiac; he thinks my going gluten-free is a fad-fueled folly.

So this is my question: should I pursue a formal diagnosis?  Or should I simply let it be and continue to follow my careful gluten-free diet? 

 

 

[GFinDC]

Hi,

Not all celiacs are underweight at diagnosis.  Some people's bodies seem to store extra fat as a defense against malnutrition, which celiac can cause.

I suggest you don't get tested now.  Testing requires a gluten eating challenge of 12 weeks for the blood antibodies or 2 weeks for the endoscopy.  Some people can't complete the 12 week gluten challenge and have to give it up part way through.  There is little to be gained by a diagnosis as there are no other treatments besides the gluten-free diet.

But since celiac has a genetic tie there is good reason to have your son tested.  He should continue to eat gluten until all testing is completed though.

https://www.nutraingredients.com/Article/2019/07/02/Micronutrient-deficiencies-Researchers-discover-change-in-celiac-disease-symptoms?fbclid=IwAR1Tp4aD7BwhzzYb8M2sMhrImzLKMLBLmzGD4wrcwdTumFBueZReXDtqBR4

Micronutrient deficiencies: Researchers discover change in celiac disease symptoms

02-Jul-2019 By Nikki Cutler

Micronutrient deficiencies, including vitamins B12 and D, as well as folate, iron, zinc and copper, are common in adults with celiac disease and must be addressed at that time of diagnosis, according to a new study.

HTTPS://WWW.NUTRAINGREDIENTS.COM/ARTICLE/2019/07/02/MICRONUTRIENT-DEFICIENCIES-RESEARCHERS-DISCOVER-CHANGE-IN-CELIAC-DISEASE-SYMPTOMS 

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Micronutrient deficiencies: Researchers discover change in celiac disease symptoms

By Nikki Cutler 

02-Jul-2019 - Last updated on 02-Jul-2019 at 15:57 GMT

 

 

Getty | Designer 491  

Micronutrient deficiencies, including vitamins B12 and D, as well as folate, iron, zinc and copper, are common in adults with celiac disease and must be addressed at that time of diagnosis, according to a new study.

Mayo Clinic researchers carried out the retrospective study of 309 adults newly diagnosed with celiac disease from 2000 to 2014 and found that low body weight and weight loss - usually associated with celiac disease - were less common than expected.

The study, to be published in the July issue of Mayo Clinic Proceedings, found that weight loss was seen in only 25.2% of patients, and the average body mass index was actually categorised as overweight.

Zinc deficiency was observed most frequently at diagnosis, the study says, with 59.4% of patients having a deficiency. Other deficiencies included iron, vitamin D, copper, vitamin B12 and folate.