highly sensitive celiac

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.

What we eat:


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

    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

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


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

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


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.

Comments ()

  1. Kimberley Stutler says:

    I have been following a gluten free diet for about 6 months after finding out I had the HLA 2 marker. After a lot of research and arguments with the doctors everything started to make sense. I had lived with anemia (no iron or B12 supplements helped) low bone density (from an adolescent), psoriasis, and kidney problems from the age of 2 which eventually turned into diminished kidney function by 36 (despite my best efforts). As well as extreme bloating and digestive unrest. Most all of my symptoms improved within a month of going GF, there is definitely a learning curve for understanding all the places gluten hides. The thing I don’t understand is why each gluten exposure can vary so much. A month ago I ate some rotisserie chicken that said ‘spices’ as an ingredient (I know, risky) and ended up doubled over all night with digestive issues the next day and generally not feeling well for a week. But, the other night for my birthday I knowingly ate gluten filled meal because I was desperate for some old favorites and only had mild stomach pain and digestive unrest. My reactions don’t seem to correlate to the amount of gluten ingesting. The other thing is that I’m fairly certain that I’m being exposed somehow unknowingly, it never occurred to me that it could be toothpaste or makeup or hair products, so thank you because it may be those things that are causing the occasional psoriasis and kidney issues.

    1. GFT staff says:

      Hello Kimberley,
      So glad to see you have gotten diagnosed and are learning about how to handle your gluten free diet. There is a lot to learn. We have over 100 original articles in our blog section. All free and written for celiac patients. We have a couple about gluten exposure and how it affects the body. You may find them useful. Good luck and thanks for sharing.

  2. Kelly Hartbarger says:

    I too am “highly sensitive”. I can not touch it or use anything on my skin that has it with out a break out of Demititis Herpetiformis, at the beginning of my journey to gluten free the inflammation was so bad it was harming my liver. The doctors thought I was an alcoholic when it was in fact a build up of unprocessed sugar from the wheat (starch). I am also highly allergic to corn and eggs. Sometimes eating is simply to live not so much for enjoyment or pleasure such as for
    my sons birthday even cutting his regular cake created a reaction for me. It gets a little depressing at times but the alternative is death so I do my best to stay away from it.

  3. Jen says:

    How did you know you are a highly sensive Celiac verses something else?
    GI doctors seem like they have a lot of guesses of what things can be, but I haven’t had a lot of experience with doctors who can help a lot with Celiac issues.

  4. Pam Santos says:

    I was diagnosed 3/12 and finally my Mass General Boston GI diagnosis was refractory 2. I too have eliminated most food from my diet and body products. My husband hunts..so venison saves my meat needs. Due to crohns and colitis, fruits and vegetables are restricted as well. I am lactose intolerant and allergic to eggs. I have stage 2 thyroid cancer that had been removed 2014 but regrew…so surgery pending ultrasound and CT scan beginning of April. Also fibromyalgia and autoimmune collagen disease…all autoimmune. .sometimes my head spin

    1. GFT staff says:

      Hello Pam,
      We are in awe of your ability to handle what sounds like a complicated medical situation. So sorry to hear of your cancer. The cascade of autoimmune diseases is all to common and is one reason we beg people to get diagnoses as early as possible so that they can start controlling their diet. Thank you very much for sharing your story with our readers. We wish you well.

  5. Anjie patterson says:

    I started a new job in a hospital cafeteria worried It might make me sick, I had been diagnosed with sprue Three yrs prior, so that job started in may, all was good till Sept I got the most I’ll I’ve ever felt in my life commit stomach cramps felt like head was going to blow off, fever sweating it was horrible. After two days I returned to work, but I was having to use the bathroom at least every 20 min every day all day for almost three weeks, my weight of course dropped a few, but then one day it quit all was normal I felt good, but my weight continued to drop I was eating normally, no diarrhea, felt good, went from 218 to 165 lbs in 7 months, went to a gastrointestinal Dr, he told me it sounded like a got a intestinal virus in Sept, and the weight loss was just a lingering effect? But Ihe never tested me for a virus? So is it because a celiac should not work around or cook with gluten, or the virus theory?

  6. C.C. says:

    I am also highly sensitive – to the point where I cannot use anything on my skin or have the slightest amount of gluten. I don’t think airborne gluten particles affect me (at least, I hope not). I live in a house with my 2 non-Celiac parents, which makes it really hard sometimes. I try to eat as healthy as I can. Paleo/Primal helped a lot.

  7. C.C. says:

    BTW, I also have to take thyroid medication for hypothyroidism. The one that has worked the best for me in terms of energy and preventing reactions is WP Thyroid. It is hypoallergenic (no corn, either). I tried Armour, but kept getting stomach issues. The WP Thyroid is awesome. Synthroid did nothing for me as I am low in the enzyme that converts T4 to T3. Synthroid is synthetic T4 hormone.

  8. Susan Gorospe says:

    One of the issues I identified, along with a strict gluten free diet, and watching medications for gluten fillers, was Fodmap diet. Many of the different sugars, ferment, and cause digestive problems. I am in the early stages of trying it out, but have noted reduced gas and diarrhea. Life is a bit better!

  9. Julie says:

    Does anyone here have the non GI gluten intolerance? My husband is extremely sensitive and breaks out in an itchy, painful rash (neck to feet) that lasts for up to 3 weeks. Any guidance? Our 3 kids under 5 and I try to maintain a gluten free home but it is very difficult not to bring traces which seem to have an effect. He also developed it at 37, but apparently had the genetic marking…

  10. jodie milton says:

    I was diagnosed coeliac 15 months ago and have been leading a gf life, the other night I did have a slice of pizza and 3 days later I’m still having gas, bloating nausea issues. I’m thinking it must be the gluten, but my cousin who is a Dietician is not convinced, she says that why would it be so sensitive now when I’ve lived for years not knowing. What is your thoughts, as I’m quite upset about it all.

  11. Veronica Strain says:

    I firmly believe that all coeliac sufferers will become highly sensitive eventually if they abide to the 20ppm trope. I would argue that keeping to that level prevents full gut healing and pushes tolerance down to zero. If the gut was allowed to heal fully (avoid all ppms) it may be able to tolerate some. The advice given on the 20ppm is, in my opinion, entirely dangerous and misleading. It’s a level that works for manufacturers and producers of overpriced GF products. I would call it a criminal level of medical negligence by any charity or medical person who supports it.

  12. Veronica Strain says:

    Your cousin should find a new job! If you have coeliac you must avoid all gluten and all times. Eating pizza knowing if will make you ill is crazy. As to sensitivity – apparently once you cut gluten out, any that gets into your diet will react more strongly. Just do not eat it, ever. And seriously, check your cousin’s dietitian qualification.

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