Life as a Highly Sensitive Celiac | What We Eat

In terms of diagnosis, you either have celiac disease or you do not. There is no grading system to assess how sensitive you are to gluten. But this is far from the whole story. If you can’t even enter the room if somebody is having a sandwich, or every party at a friend’s house ends with a reaction even when you don’t eat or drink, perhaps you fall in the highly sensitive category of celiac patients. Some celiacs cannot tolerate even the slightest exposure. For this group labelled as “highly sensitive celiacs” even everyday interactions can pose problems. We share research we found regarding sensitivity levels later in this article.

Our family members fall into the highly sensitive category and have learned how to deal with celiac disease and live happy, highly productive lives despite our heightened sensitivity. We have had so many celiac patients ask us how we do it. How do we cope and above all what do we eat? How could we not respond? We open our window and share some products that we have found helpful to us. Our disclaimer is that we use these products ourselves and they work, but everyone is different. Every product on our list has been researched by us but we encourage you to do your own investigation.

Dairy

1. Organic Valley milk, sour cream, cream and butter

2. We prefer the grass fed milk

Vegetables and fruits

1. Any veggie that is organic. If it is not organic we don’t eat it period. We don’t use frozen or processed veggies at all. Only fresh organic veggies will do.  (We grow some of own vegetables in organic soil. All of the photos accompanying this article were taken in our own gardens.)
   

   lettuce from the raised beds

2. Same for fruits only organic fresh fruits will do (we are fortunate to have fruit trees)

peaches from the orchard

Meat and Eggs

1. Eggs have to be free range organic eggs, we try to stay with local egg producers if possible but also like Vital Farms pasture-raised organic eggs

2. All meat is purchased at Whole Foods and is organic or grass fed and free range, we don’t buy any processed meats

Beans and rice sides

1. Eden foods has great canned beans that are all organic

2. For rice we prefer Lundberg’s organic rice

Condiments

1. We don’t use any spices at all they are too hard to trace

2. For salt we use Eden sea salt

3. For pepper we use tellicherry whole pepper corns

4. PG tips tea

5. Olive oil is Lucini extra virgin organic olive oil

6. We grow our own herbs in our herb garden, anyone can grow herbs in a window, and they make a huge difference!

lettuce and herbs mixed

7. We always check wine closely and find that French Chardonnays are usually OK

8. King Arthur’s line of gluten free baking mixes

Personal Care items

1. Sensodine tooth paste

2. Eco-dent gentle dental floss

3. Skikai shampoo and conditioner

4. Shikai borage therapy lotion

5. Toms of Maine soap

6. Yonka skin care (check the labels not all are gluten free)

7. Clinque powder and base

8. Lancome or Chanel lipstick (make sure you call to make sure)

9. We are still researching mascara

Medications

1. Tirosint thyroid medication

2. CeliVites vitamins, we take all three

3. Alka-Seltzer plus cold medicine effervescent tablets

4. Tylenol

What you don’t see

1. Bread and crackers, yes we know there are tons on the market, we have tried them and have chosen to eliminate them. There may be some that are fine but not for us.

2. Any boxed or processed foods

If you are looking at our list and thinking it is way to limiting we understand. We aren’t suggesting that we have a solution that will satisfy everyone. We are responding to our customers, they are our reason for sharing this list. We have created our safe list after years of research and testing tons of gluten free options. We visit our celiac doctor yearly and insist on being tested for vitamin levels, red blood cell counts and iron profile, thyroid, celiac antibodies and cholesterol. Over the past two years we have gone from having low to marginal results to getting perfect results, consistently in the normal range. No more reactions, no more bloating and tons of energy. And fabulous meals made from the freshest ingredients that taste great.

Back to What the research tells us

You probably know of other celiac patients who are not so sensitive and are able to put up with a certain amount of gluten exposure without showing any symptoms. They can share a dinner out with others who have gluten filled meals and not be affected by the gluten as long as they themselves eat a gluten free meal. We wanted to find out why there are differences in sensitivity among us.

There is not a lot about the sensitivity levels in the medical literature so it is hardly surprising that we get very little input from our health care providers on this subject. This is what we found in the medical literature.

You might have developed a much higher sensitivity to gluten the longer you follow a strict gluten-free diet. There is some anecdotal evidence to suggest that shortly after diagnosis, the body seems able to cope with small amounts of gluten, but lack of exposure due to a gluten-free diet seems to lower its ability to cope. It’s almost as if the body “forgets” what gluten looks like and “panics” to even insignificant amounts!

Curiously, despite this variability in terms of sensitivity to gluten, there is very little research in the way of finding the reason behind these differences between patients.

It is interesting to speculate about possible reasons to explain this variability, and one of the first explanations that comes to mind involves genetic differences. It is well-known that celiac disease patients carry one or two specific forms of a gene called HLA (HLA-DQ2 and HLA-DQ8), but the story has recently got slightly more complicated.

It turns out there are a variety of other genes not absolutely necessary to develop the condition, but which are associated with celiac disease and may increase or decrease symptoms. For example, researchers found four genes involved in gut wall function which work differently in some celiac disease patients and may explain these differences in sensitivity.

What does the future hold?

It’s still too early to say, there may come a time when researchers can offer a much more detailed diagnosis, including levels of sensitivity specific for each patient after a detailed genetic analysis. In addition, a better understanding of how the intestinal wall works and what genes are involved could lead to new therapeutic treatments specially developed for highly sensitive patients.

Whether you are a highly sensitive celiac due to awakening the immune response with a rare exposure or you have a genetic component in play really does not matter. If you fall into this category you know it. We hope that sharing a bit about what we have found safe for us will help others in their quest for a healthy gluten free life.

Our community is very engaged and we welcome your comments. Please share your experiences with other celiac patients in the comment section.