My mother is 84. She was diagnosed with Celiac Disease in the early 1960's and has led a gluten-free life since then. Last year she was diagnosed with oral cancer and underwent chemo and radiation, finishing both in May. She was on a g-tube until July.
Eating and drinking have remained a huge issue for my mother. She suffers from a dry sore mouth, lack of taste, no appetite and difficulty swallowing. Food is often repulsive to her. Between these issues and the limited gluten free diet she must maintain it is very hard for her to get the nutrition, fluid and calories she needs.
The nutritionist at our local hospital has not been very helpful. She had a swallow study done and then her esophogus widened, but saw little improvement.
She adamently refuses to consider another feeding tube, and I feel like we are running out of options. Does anyone have experience with oral cancer and Celiac Disease? Can anyone offer any advise? Thank you for any help you can offer.

Hi Dorothy,
I am unfamiliar with what one is allowed to eat on a gluten free diet. My recollection is that she is not allowed to have any white flour products. Can she drink any of the nutition drinks like Ensure Plus or Carnation VHS or are milk products off the list also? Please give us a little more info on what she is allowed to eat or drink and maybe we can ccome up with some ideas.

Take care,
Eileen

Eileen,
FYI;
"Gluten-free" as defined by the Codex Alimentarius, a Geneva-based international organization that is jointly run by the World Health Organization (WHO) and the Food and Agriculture Organization (FAO) of the United Nations, is defined as follows:

Section 1.1:

Carnation Instant Breakfast VHC advertises itself as Gluten Free.

Gluten free diet means no wheat, rye, oat or barley. My mother thrived on a healthy 'naked food' diet for years. By that I mean plain meat, fish, fruits, veggies and dairy. No bread, no pasta. Most processed foods and sauces are out.
Now she eats creamed rice cereal, eggs, applesauce, boiled mashed veggies, ice cream. All in very small amounts and all with difficulty. She never had a huge appetite but now she has none. She does drink Ensure, Gatorade, weak tea and water and takes a multivitamin each day.
Carnation Instant breakfast is a good idea. Thank you!

Dear Dotsdaughter

I have celiac disease and oral cancer, aggresive perineural squamous cell cancer of the upper lip. I did not find celiac disease to be a factor. I liquified my food in a blender, organic turkey, chicken, veggies and fruit. I refused a feeding tube. I lost 26 pounds so I took MUSCLE JUICE every day and that provided 2,000 calories and in 30 days I had gained 30 pounds. You can find Muscle Juice on the internet, it is not the same as Muscle Milk that you can buy in most pill stores. It is a powder and not expensive. I have only seen it on the internet. My mother found it for me.

PS
If you try Muscle Juice, be sure it is gluten free. I was so desperate to gain weight I didn't check although I have celiac disease and it did not bother me.

I have a friend whose whole family has celiac disease (Scottish ancestry). They can eat corn products, potatoes, nuts and nut butters, rice, non-grain "grains" (e.g. quinoa), otherwise stick to veggies, fruits fish, meats etc. as noted above. Some types of oat products are apparently OK.

The big issue is that in this country many products that you might think do not contain gluten actually do. For example, the grilled chicken (non-breaded) at McDonald's contains wheat gluten as a binder as it is a processed chicken product.

I noted in my last visit to the UK -- where a lot of folks have celiac disease, as it is most common in folks of Celtic origin -- whole grocery store aisles are stocked with "gluten-free" products. Not here -- yet.

Sometimes taste returns slowly -- you may wish to experiment with strong-flavored products. For some reason, seafood can often be tasted by those who otherwse have problems with flavors. It may be the strong odor (odor contributes a great deal to taste) as well as the saltiness. Maybe try a creamed crab or clam soup -- my husband liked these when he was in treatment.

Gail