Celiac disease & Ehlers-Danlos: What’s the Connection?

May is Celiac awareness month. It’s also Ehlers-Danlos awareness month. And if you’re really genetically blessed like me, you may be personally aware of the link between the two. If not, indulge me in a quick discussion of the research, because it’s too rarely discussed.

The Ehlers Danlos Society Logo

There was a 2011 paper which indicated that Celiac was much more common than expected in people with hypermobile EDS. [1] 19% had positive Celiac serology (bloodwork), and 16% agreed to a biopsy, and those 16% were confirmed to have Celiac disease. Notably, the sample size for this study was small—it was only 31 people—however, 16% is much higher than the expected prevalence of Celiac disease, which is ~1%.

2015 paper also indicated a potential link between Celiac disease and hypermobility, with found that 30% of people with Celiac met the criteria for Joint Hypermobility Syndrome (JHS), which is now known as Hypermobility Spectrum Disorder (HSD). [2]

Most recently, in 2021, a case control report looked at people with all types of EDS, and found that Celiac disease was one of the most common GI conditions associated with EDS, and the association was much stronger than in controls–with a 5.47 odds ratio. The study did not break out EDS subtypes, however. [3]

So, while the percentages and the details may still be a question, clearly there is some link between Celiac disease, EDS and Hypermobility Spectrum Disorders. And it is worth noting that while EDS is quite rare, HSD is common; 2-3% of the population.

Of course, testing is always essential before dietary changes because a proper diagnosis is critical. Other people may simply respond poorly to FODMAP content of wheat, so a much larger portion may feel better gluten free, even though they don’t have Celiac.

For more of the research on digestion and hypermobility and EDS, I do have more fun stuff on nutrition for GI issues and all things hypermobility here and for nutrition professionals, consider checking out the Digestive Disease Nutrition series, which includes a lecture from me on how hypermobility affects digestion.


  1. Danese C, Castori M, Celletti C, Amato S, Lo Russo C, Grammatico P, Camerota F. 2011. Screening for celiac disease in the joint hypermobility syndrome/Ehlers–Danlos syndrome hypermobility type. Am J Med Genet Part A 155:2314–2316.
  2. Fikree A, Aktar R, Grahame R, Hakim AJ, Morris JK, Knowles CH, Aziz Q. Functional gastrointestinal disorders are associated with the joint hypermobility syndrome in secondary care: a case-control study. Neurogastroenterol Motil. 2015
  3. Rachel S Brooks, James Grady, Thomas W Lowder, Svetlana Blitshteyn, Prevalence of gastrointestinal, cardiovascular, autonomic and allergic manifestations in hospitalized patients with Ehlers-Danlos syndrome: a case-control study, Rheumatology, 2021.

Autumn 2020 Newsletter

Infant feeding study, a low FODMAP vegetarian easy dinner recipe, news, Halloween & more


New study—breastfed infants were either fed gluten early (starting 4-6 months) or after 6 months. Then they compared the rates of Celiac at 3 years. Surprisingly, the early intro of “high dose” of gluten group had lower rates of Celiac at 3 years (0%, vs 1.4%)
The study suggests that higher amounts of gluten may be the key to prevention here. They specify that this study involved an age appropriate “normal” amount of gluten—3.2 grams by 9 months—but  the paper does not provide an example of what that means in “real life”.
Longer follow up is underway…
Also: Hot off the presses—Celiac is not linked to increased risk of COVID. Phew!
And big news for many: For a long time, SIBO tests looked at 2 gasses, hydrogen and methane, but this would miss some people, because there was starting to be evidence that hydrogen sulfide was also a factor. Now labs are available can also examine this, too, and make the clinical picture clearer.
Ooh, did you hear? A bunch of Ben & Jerry’s flavors are about to be certified GF. If you happen to like ice cream. ?
Halloween on the way…
My standard Halloween suggestions here….some things may require adaptations.
From Allergic living–

Egg Bake Slice

Easy cheesy egg bake
We’ve still got an abundance of basil to use up this time of year, and it’s a balancing act of finding quick and easy recipes. This one takes about 5 min prep time and it’s delicious. Bonus—it’s gluten-free, vegetarian, low FODMAP, SCD friendly and adaptable for dairy-free.

Gluten Free Summer Fun

Hope you’re having a healthy summertime.

Green Beans from garden
Garden Green Beans

A few quick updates:
Time to do the happy dance! The Gluten-Related Disorders Training for health professionals is officially out. This is an effort to train dietitians and other health professionals on Celiac, and other disorders related to gluten. It’s taken over 6 years—close to 7! But it’s done.
Module 1: Medical Aspects of Gluten-Related Disorders and Gluten-Free Dietary Treatment. Alessio Fasano, MD Tricia Thompson MS, RD
Module 2: Going Gluten-Free: Moving Clients from Diagnosis to Implementation. Mary K. Sharrett, MS, RD, Suzanne Simpson, MS RD
Module 3: Enhancing Quality of Life in Individuals on a Gluten-Free Diet. Amy Keller, MS, RD, Anne Lee, MS, RD
Module 4: Gluten-Free Diet and the Life Cycle. Cheryl Harris, MPH, RD
Module 5: Nonresponsive Celiac Disease and Developing Alternative Treatments. Melinda Dennis, MS, RD Daniel Leffler, MD

I have no vested financial interest—but I’m excited that this resource is finally available, and more RDs will be educated on Celiac.
RDs, there will likely be grants available to reimburse the cost of the trainings if you complete all the units, and I will post more info as it’s available.

Long-time Celiac supporter Dr. Aline Charabaty has started a fundraiser to help those affected by the tragedy in Lebanon. If you’re inspired to help, here’s more information.

Wishing you a safe end of summer!

Harris Whole Health offers individual sessions, currently only virtually! Cheryl works with people to feel and look their best with a range of specialties, including Celiac Disease, IBS, IBD and a range of tummy troubles. Let’s get you on your way to achieving your goals. For an appointment with Cheryl Harris, Registered Dietitian and Nutritionist, please click here, email or call 571-271-8742.

G-Free Summer


Just a few studies and thoughts for summertime.

OMG strawberries! And the birds haven’t gotten them yet. Yum!

Home garden strawberries

If you are tempted to get out and growing, it’s the perfect time to plant tomatoes, peppers, basil, cucumbers…

And SOME Farmers’ Markets are opening, or partially opened, so do look if you enjoy them.

A new study suggests that probiotics may lead to a breakthrough in treatment for a gluten-free diet. Specifically, people with Celiac have lower levels of bifidobacteria, which tends to be linked to good health. But before you head to the supplement aisle, this research is still really early yet, so stay tuned.

FDA allows food substitutions because of COVID. ….and there’s concern that there may be slip ups that may lead to gluten added to foods accidentally, because substitutions are allowed. Gluten-free Watchdog has comments here. This is also a concern for people with food allergies. It’s a good idea to stick with brands you know and trust, and know do a good job, and when in doubt, check with manufacturers.

Celiac… and cookware? Maybe. A new study indicates that chemical exposures in pesticides, nonstick cookware, etc. is linked to higher levels of Celiac. This is only a pilot, but it’s interesting data for understanding triggers and prevention.

The National Celiac 5K is virtual…so for all you runners who want to get out there, May 30th is the date!

Children’s National DC is holding their Expo virtually this year on June 14th. Details here: Gluten-Free Education day

A PSA for local businesses with g-free menus—if you’re ordering take out, try to order from the small, locally owned places. Most are really struggling! The large chains will likely make it through this, but if you want your favorite places to be around in a few years, make sure you make the effort to order in and buy gift cards if that’s in your budget.

Wishing you all a happy and healthy summer,


Harris Whole Health offers individual sessions, currently only virtually! Cheryl works with people to feel and look their best with a range of specialties, including Celiac Disease, IBS, and a range of tummy troubles,  promoting great health and “whole foods” eating. Let’s get you on your way to achieving your goals. For an appointment with Cheryl Harris, Registered Dietitian and Nutritionist, please click here, email or call 571-271-8742.

Sprouting Garlic (low FODMAP)

Sprouted garlic

It’s a strange time right now. I know, the understatement of the century. A month ago, I/we were all out and about and didn’t know how much would have changed, and how fast, and yet here we are. So…

Whether you’re low FODMAP and avoiding garlic, or looking for a fun DIY experiment to entertain yourself, or looking for something to entertain your kids, hopefully you can get your hands on garlic and some dirt, because that’s all you’ll need for this little experiment. This is perfect weather for sprouting it outside in Virginia right now.

The good news is that you can sprout garlic pretty quickly and use the shoots the same way you might use scallion tops. Monash hasn’t tested garlic sprouts yet, but similar foods, like the green parts of scallions and leeks are usually well-tolerated, so it may be worth giving this a go if you miss your garlic! It’s easy to do now, even if you don’t have a lot of space or light.

Love garlic? You’re not alone. For many of my clients on a low FODMAP diet, missing garlic is the biggest complaint. Sure, there are scallions and chives, and garlic infused oil, but…there’s nothing like the real thing!

I sprouted these in a few weeks in a tiny pot on my shady patio, so if it works there…it’s likely to work in any pot during Autumn, Spring or Summer.

Preparing the plant will only take a few minutes.

Take a large clove of garlic with the peel still on it.


Put it in the soil with the pointy end up, and then cover with just ½ inch of soil


Water…and watch!


This is at 3 weeks.


Let me know how it goes for you. And if you actually want to grow garlic bulbs itself and not just the shoots, you want to plant it deeper, generally 1.5 inches.

And a special bonus–sprouted garlic seems to have even more antioxidants than regular garlic.

Stay home, stay safe and wishing everyone the best.

Harris Whole Health offers individual sessions, currently only virtually! Cheryl works with people to feel and look their best with a range of specialties, including Celiac Disease, IBS, and a range of tummy troubles,  promoting great health and “whole foods” eating. Let’s get you on your way to achieving your goals. For an appointment with Cheryl Harris, Registered Dietitian and Nutritionist, please click here, email or call 571-271-8742.

G-free Things I Love

chocolate almond cup

Things I love…and things I don’t

Chocolate almond cup
Chocolate almond cup

Hope you’re having a cozy Wintertime.

Here are a few interesting studies, and a quick and yummy gluten-free AND low FODMAP dessert you can make in 5 minutes. Yep, 5 minutes!!! It’s a chocolate almond cup for two. And then what I don’t love, and how you can make your voice heard.

tuxedo strawberries
Tuxedo Strawberries

And if quick, easy and delicious isn’t your thing, here are other Valentine’s day recipes I love to make.

Fun—SELF magazine shared my favorite book on relationship with food. Any guesses? It’s a great list they’ve put together.


Where in the world is the most Celiac? Here’s the most current research. What’s new/interesting? Celiac is more common in women than men. Interestingly, this study showed it was least common in South America, followed by Africa, North America, Asia, Europe and Oceania (includes Australia). This indicates that Celiac seems to be more common in Asia than in years past.

Trace amounts of gluten are common, even among people who believe they are strictly gluten-free. This is a small study…but caught my eye, especially as there’s been a push for ways for people to be less vigilant. Unfortunately, that doesn’t seem to be the case.

Menal health is an issue “without a doubt” for people with IBD. It’s hard, physically and emotionally! This matches what I see.

And now for what I DON’T like

General Mills is considering a new “Gluten Friendly” claim:*Gluten friendly in this context means items manufactured without gluten-containing ingredients. General Mills does not claim these items meet FDA requirements for “gluten-free” because of the possibility for cross-contamination with gluten, including due to shared cooking and prep areas in kitchens.

My take: OMG no. Gluten and I are not friends. The FDA defined gluten-free for a reason. The GF is recognizable and understood to mean gluten-free. They are being deliberately misleading.

Worse, these products are designed for food service—think hospitals, long-term care facilities, etc. These are often captive audiences, who believe they are getting gluten-free foods. As mentioned in the research above, many people are getting more gluten than they can safely tolerate already.

I know you’ve heard this rant from me before, but it’s upsetting. While I have no problem with people eating gluten-free because they just feel better, I worry about people who need to be strictly gluten-free for medical reasons. The underlying problem here is that even if you choose not to eat General Mills foods, if a big company decides to do this, and gets away with it, it will pave the way for others to do the same.

Fortunately, Gluten-free Watchdog is collecting comments, because this line is still in the “proposed” phase. Please send your comments along. This is when you want to make your voice heard.

Cheryl Harris, MPH, RD is a Registered Dietitian Nutritionist and Certified Wellcoach in Fairfax, VA.  She helps people with a range of dietary issues, including Celiac Disease, digestive issues, preventing diseases and “whole foods” eating. Let’s get you on your way to achieving your goals and feeling great!  Email or call 571-271-8742.

Happy G-Free Holidays

Christmas Meringues!

Something for everyone!

More recipes from around the web:

Wishing you a peaceful & joyful season!

Cheryl Harris, MPH, RD is a Registered Dietitian Nutritionist and Certified Wellcoach in Fairfax, VA.  She helps people with a range of dietary issues, including Celiac Disease, digestive issues, vegetarian and vegan diets, preventing diseases and “whole foods” eating. Let’s get you on your way to achieving your goals and feeling great!  Email or call 571-271-8742.


Diet for IBD

“Dining with Inflammatory Bowel Disease” is such a great article by Dr. Gu and Dr. Feagins. It’s a review covering research about the dietary causes and treatment of IBD. If you can, read the whole thing. It was limited access before, which motivated me to write up this summary, but now it’s open access.

In terms of what *may* trigger, or increase the likelihood of IBD:

IBD is increasing…and associated with a Western lifestyle. Many suspect diet is a main component of that.

General beliefs

  • Nearly half of people with IBD believe diet contributes to the development of the disease
  • 69% of people say they get little to no info from providers.
  • Info found on online is often restrictive, conflicting and of poor quality.

What diet components might contribute?

  • Meat—especially red meat, may be a component. When meat is digested and broken down in the gut, it releases hydrogen sulfide, which might be a part of the development of UC. There are several potential mechanisms, including that the gut mucosa may be more permeable to pathogens. While studies are mixed in their findings of the relationship between meat and IBD, there is generally a trend toward finding that relationship, and a prospective study showed that people with UC who had a higher red meat consumption had a greater risk of relapse.
  • Fat—a Western diet tends to have inflammatory fats. There’s been a lot of interest, and suggestion that omega 3 fats might be protective. One large study showed that women consuming healthier fats had lower risks of UC, particularly.
  • Emulsifiers—Much of the research is on animals, showing that these may cause bacterial changes through less diversity in the microbiome, a general increase in inflammation, less butyrate (a helpful short chain fatty acid) and may cause increased intestinal permeability and changes in the mucosa (!!!) Not good! Few studies have looked at humans, the little study that has been done suggests that carrageenan may cause problems for IBD patients.
    • These are nearly ubiquitous in anything found on a shelf in the grocery store in a package. This means things like carrageenan, polysorbate 80, carboxymethylcellulose and the range of gums found in so many foods on the shelves.
  • Microparticles: these are small particles of aluminum, titanium dioxide and silicon—more study is needed to see where these fit and what impact they may have.

Beneficial effects

Finally! Research is starting to support the protective effect of fiber. Most studies are suggestive of a protective effect, although not all are statistically significant. Fiber may help with mucosal function because it supports the production of short chain fatty acids.

Preventing relapse

One study reports that ~68% of people make diet changes to prevent relapse, with 66% giving up favorite foods. But what are they choosing? And does it help?

  • Spicy, dairy, fatty foods and fibrous foods and possibly alcohol were what patients ID’d as a problem, but studies haven’t backed it up.
  • There is brief, but important mention that many test positive for lactose malabsorption, but a smaller portion have symptoms, mainly diarrhea—43% with CD, and 32% with UC. That’s a lot, but it isn’t all patients, either.

The diets…oh, the diets.

Exclusive Enteral Nutrition (EEN)

This means only 100% liquid feeding, either orally or by tube feeding. This is generally done for pediatrics, and it is unknown why it works, but it does for Crohn’s. Polymeric is as helpful as elemental. Studies are good for children, as good as steroids are; this isn’t the case for adults. (Cheryl’s note—my understanding is that EEN is often used in Japan with good rate for success—and many adults are unwilling to do it. I can’t blame them!) EEN does not seem to help UC.

CD-TREAT/ CDED (Crohn’s Disease Exclusion Diet) are two diets that try to mix EEN and “whole foods” to increase tolerability for children. This is very promising. (Cheryl’s note—details of the CDED have not been fully released because studies are still ongoing. While some info is available, it isn’t enough to fully design a diet. It’s frustrating as a clinician. Stay tuned.)

SCD—Specific Carbohydrate Diet

The SCD removes many foods that are believed to be poorly absorbed. It removed all grains, and focuses on fruits, vegetables, proteins, nuts. Etc. While studies are still limited, there is indication of improvement, including reduction in medications, and results have been promising, especially in pediatric patients.

(Cheryl’s note: I wrote a review of the research on the SCD for RDs a few years back which is mostly up to date.)

There are ongoing studies, including the DINE SCD and PRODUCE study, which looks at comparing a strict SCD diet with a modified SCD. These will be great additions to our overall knowledge.


Low FODMAP is generally used for IBS. It restricts rapidly fermentable carbs, and if patients benefit, reintroduces them in a systemic way to identify culprit foods.

There have been only a few studies, but those found that people on a low FODMAP diet did see decreases in symptoms for people with IBD. Changes were in symptoms like pain, bloating, etc.—fecal calprotectin did not change.

  • Low FODMAP is not intended as a long-term diet—it is an elimination diet. Following the elimination long term might lead to nutrient deficiencies. Don’t do it!

Cheryl’s note: The article notes that low FODMAP is notoriously hard to follow. May I suggest that with the support of an experienced professional, it really should be quite manageable. 🙂 Monash University has a list of RDs around the world who are extensively trained. I do have some resources for low FODMAP here.

Semi-vegetarian diet

A small, prospective study found benefits in Japan. This has not been duplicated in other places by other researchers. However, studies of reducing meat in other circumstances have not yielded benefits. This may be about different diet practices or adherence.

Curcumin may be a helpful adjunctive therapy. There is some data for mild to moderate UC. There is also now data for patients with CD showing endoscopic improvements as well. (Chery’s note—exciting!)

Moral of the story—more data is needed. And give lots of love to providers who you see who know and care about diet and IBD, because they are awesome!

Many thanks to Phillip Gu, MD and Linda A Feagins, MD.

October G-Free Newsletter

Halloween toys as treats
Halloween toy treats

Halloween candy lists are out for 2019. As many of you know, sometimes candies that are normally GF are not gluten-free when they are in holiday shapes. But those of you who have been reading for a while know my feelings on Halloween candy—skip it, and go for toys! It’s more inclusive, and you’re less likely to eat the leftovers.

HuffPo has a GF bread roundup. Is your favorite there? Maybe your new favorite will be.

ghost-shaped meringues
Spooky Meringues

Looking for a fun recipe? Spooky meringues are a staple around here. Meringues are a regular here because they’re simple…. And I appreciate that they are gluten-free, dairy-free, soy-free, low FODMAP, gastroparesis friendly, GERD friendly…and delicious! The recipe is here for the bunnies, just draw a squiggle instead of a bunny. ?

Interesting research

Why get relatives screened for Celiac? Because they’re more likely to have it, even without symptoms. 44.4% had Celiac, 28% with no symptoms.

Isn’t this fascinating–> different probiotics may be able to suppress or even reverse food allergies. Granted, studies are currently only in mice, but it’s still a neat and encouraging concept.

Ah, the new cross-contamination study…I have so many thoughts. First, food anxiety is real. It’s a problem. I see it in clients, and I experience it, too. It’s no fun to get sick when eating out, or with friends. And study after study has shown that people with Celiac often have incomplete healing from intestinal damage. And then there’s a new study showing that it’s safe to be less concerned with casual contact and cross contamination at home. It’s a very small study, and that’s been a major concern. It addresses components (toasters, pasta water, etc.) when the real question is, what would the implication be for a real person over a typical day? The study contradicts all of the major Celiac orgs and what I’ve seen with clients over the years. I’m really curious to see if/when it’s repeated, and I have very mixed feelings. And, of course, if people are getting all the “allowed” contamination at home, what happens when they inevitably go out?

Bottom line:

  1. This is a very small study
  2. The test methods seem to be inadequate (my background isn’t in this arena)
  3. People with Celiac can only tolerate trace amounts of gluten. It’s often easier to control contamination at home than out.
  4. I absolutely agree with study authors in articles saying this study means that people should feel safe traveling without bringing their own pots and pans and utensils with them as they travel. I have rarely encountered clients who do that, and if this study provides peace of mind on that front, great.
  5. As summed up by Dr. Fasano from the Center for Celiac research: interesting, but it’s not enough to change any of the current guidelines at this point.

I look forward to more research on this as it comes out…and will keep you all posted.

And re: food fears, there’s a great post here from Kate Scarlata on food fears.

A new study on the AIP diet shows that it helps IBD (Crohn’s & UC). This is great news! The AIP is a very restrictive diet that removes grains, sugars, nuts, seeds, eggs, nightshade veggies, beans, and more. But…the rates of improvement were about the same as studies that were less restrictive, which is disappointing. It’s possible it helped people who had more severe damage. But the study doesn’t try to separate the effect of unlimited RD support, a health coach and a community focused on stress reduction better sleep, etc. and attributes all the positive changes in quality of life to diet change, which isn’t reasonable.

Cheryl Harris, MPH, RD is a Registered Dietitian Nutritionist and Certified Wellcoach in Fairfax, VA.  She helps people with a range of dietary issues, including Celiac Disease, digestive issues, preventing diseases and “whole foods” eating. Let’s get you on your way to achieving your goals and feeling great!  Email or call 571-271-8742.

G-Free On the Go

Cheryl and blueberry plant

August is often a great time for road trips! I’ve been having conversations with clients about dining out gluten free more than usual lately, so I wanted to share some tips:

Cheryl and blueberry plant
Cheryl Harris with her blueberry plant in July 2019

Local NoVA gal Karen runs GlutenfreetravelSite.com, which is a great resource and has an app. Find  Me Gluten Free is also a wonderful resource that also has an app for restaurants. Of course, reviews are only a starting point, you need to ask good questions—unless you’ve gone somewhere that’s dedicated gluten-free. Here’s a list for places from DC to Maine, and another dedicated GF restaurants in the DMV. Of course, these places can only exist if our community supports them!

My favorite question is, how do you make sure that xyz stays gluten free? If the waitstaff has an answer like, oh, we have a process with separate fryers, separate workstations, or that they grill on foil, or use different utensils or a process of whatever kind, I feel somewhat comfortable. They’ve thought through the pitfalls and that’s a big plus.

If I get a blank stare, that tells me that either I need to educate them and talk through each step carefully, or I may want to reconsider eating at that place. It’s just not worth it to get sick.

I also like the dining cards from Triumph dining, which are on Amazon…unfortunately the only have disposable ones now, but they are still helpful tools when out to eat.

What to pack? I have my grab and go list of bars and etc. in addition to naturally GF staples.

Enjoy the rest of your summer!