Author: Cheryl Harris

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

updated for May 2025

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

We know that people with EDS, especially hypermobile EDS and hypermobile spectrum disorder are more likely to have GI issues. 90% or more report digestive distress; many people have more than one GI issue. This can have a profound impact on nutrition care.

In terms of Celiac, a 2011 paper indicated that 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%.

A 2015 paper also indicated a potential link, and 30% of people with Celiac meet 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. People with EDS who were hospitalized had a 5.47 odds ratio of having Celiac than controls who were hospitalized for other reasons. The study did not break out EDS subtypes, though. [3]

A 2024 pediatric study looked at rates of GI conditions among children and young adults with hEDS and HSD, and found a 4% rate of Celiac disease.[4]

So, while the percentages and the details may still be a question, clearly there is some link between Celiac disease, and EDS/HSD. And since hEDS/HSD affects 2-3% of the population, this should be on every health professional’s radar.

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

Footnotes

  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.
  4. Sood V, Kaul A, El-Chammas KI, et al. High prevalence of gastrointestinal disorders in a large cohort of patients with joint hypermobility. J Pediatr Gastroenterol Nutr. 2024;79(1):42-47. doi:10.1002/jpn3.12245
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Gluten in Medications

Happy Springtime! My favorite season, hopefully yours, too.

Medications can contain hidden gluten!

Okay, if you only read one thing, read this!

Did you know companies don’t need to label for gluten in meds?

There’s finally some movement on gluten in medication….and hopefully finally goes somewhere. Congressman Tim Ryan D-OH and Rep. Steve Stivers R-OH have teamed up for the Gluten in Medications Act.

If you’ve been around for a while, you know this has been problem for quite some time, with no resolution in sight. I testified for the FDA in 2011, and they listened politely. Nothing changed.

I dearly hope that this time, there’s enough bipartisan momentum. And please nudge your Congressional reps to sponsor this bill. Because this isn’t the first time this bill has been proposed, but hopefully it’ll finally go somewhere this time! Handy dandy little form to nudge your rep right here.

Other news of interest:

  • Got fructose malabsorption? you’re in good company. Some of it is that in the US, we eat more fructose. This paper (from this month) has a good review
  • Kate Scarlata has a wonderful initiative for IBS month (April) to end hunger. To learn more, or to donate, check it out.

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.

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Passover, G-Free Style

Passover isn’t here until March 27th but many of the products are already appearing in grocery stores. Not all Passover foods are gluten-free, but many are, and there’s a much wider selection than usual at the grocery store. This can be a good time to stock up on GF cakes and mixes, cookies, macaroons, some of the “bread” crumbs and supplies like potato starch. As an added bonus for people with multiple restrictions, most Kosher for Passover products contain no corn or soy products, either.

In a nutshell, the basic rule of foods for Passover is no leavened foods, which eliminates normal breads, cakes etc. Matzo is the main exception. Matzo is an unleavened bread usually made from wheat and is eaten regularly, and some products contain products with Matzo and matzo meal, which also potentially listed as cake meal or farfel. However, many products don’t contain gluten. Or, if you find products labeled “non-gebrok or gebroktz or grebrochts” (or another spelling variation) they’re non-grain containing and therefore have no gluten-containing ingredients. Often Kosher for Passover products and cakes are made of potato flour or nut meals rather than wheat or glutinous grains.

As always in the gluten-free world, read labels carefully. “Kosher” and “Kosher for Passover” are two different things entirely. Kosher for Passover foods will be labeled “May be used for Passover” or have a symbol that says OUP. I have often seen “regular” Kosher foods in the Passover section at grocery stores, so please do check the labels very carefully.

Keep in mind that many Passover foods are imported from other countries. Technically, imports must follow the FDA allergen labeling laws, but I can say I’ve seen many that aren’t labeled quite in the same way as the FALCPA U.S. labeling laws dictate So the label on an import may say matzo, but may not say “wheat” explicitly or have the disclaimer stating that it contains wheat.

Most Kosher for Passover products will have to adhere to strict standards for cross contamination from a religious perspective. Voluntary allergen labeling statements (AKA “Made in a factory” claims) are still not regulated.

From a gluten-free perspective, possibly the best part of Passover is AFTER Passover, when all of the great gluten-free goodies are on sale! Passover ends April 4th 2021, so mark your calendars, because the word has gotten out in gluten-free circles and the mad rush is on.

Back when you really couldn’t get GF prepared foods in the regular grocery store, this was a much bigger deal. But it’s still nicer to have an expanded selection, and nicest of all is AFTER Passover, when all of the products are on sale!

For people who DO celebrate the actual holiday of Passover, not just the gluten-free food, here are some great recipes and information:

Other favorite gluten-free recipe sites for Passover? Let me know in the comments section on my website.

Lately, Whole Foods has stocked a gluten-free Matzah, and the brand is Yehuda, so keep your eyes peeled! You can also get it on Amazon. It’s not technically matza because it’s not made of oats, but it’s “Matzo style squares”. There are also many more Kosher markets, such as Kosher Mart in Rockville. Some local grocery stores also have a great selection.

 

 

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Nutrient Balance: Gluten-Free Newsletter

It’s National Nutrition Month, so it’s a good time to touch on the cornerstones of a gluten-free diet to make sure you’re getting the nutrients needed for health.

Are you getting the nutrients you need on a gluten free diet?

Mint quinoa bowl
Mint quinoa

When people start off on a gluten free diet, step one is figuring a way to take out all the gluten, and get adjusted to this new way of living and eating.  But as life starts to ease back to normal, it’s important to take the second step and eat a diet with all of the nutrients you need to feel better, allow your intestines to heal, and live well.

Years ago, studies showed that many people weren’t getting enough iron and B vitamins, so the US government decided to fortify our breads, cereals, etc.  However, GF foods are considered specialty foods, and there are no laws about enrichment. Many GF foods are not fortified, so it’s not surprising that researchers have found that on average, people on a gluten free diet are eating less of these key nutrients than general population.   People on a gluten free diet also seem to be eating less calcium, fiber and grains than recommended, especially among women.

Calcium:

Calcium is particularly important to people with Celiac disease, since osteoporosis often occurs due to intestinal damage from CD, which can cause malabsorption of calcium and Vitamin D.  Also, many people with Celiac disease avoid dairy due to lactose intolerance.   In a study of people on a GF diet, less than a third of the women ate the recommended amounts of calcium, although most men did get the amounts recommended. When people start off on a gluten free diet, step one is figuring a way to take out all the gluten, and get adjusted to this new way of living and eating.  But as life starts to ease back to normal, it’s important to take the second step and eat a diet with all of the nutrients you need to feel better, allow your intestines to heal, and live well.

Iron:

A survey of people on a gluten free diet found that less than half of women are getting recommended amounts of iron.  This is particularly important, since many people with Celiac disease are anemic before going gluten free due to the constant intestinal damage and irritation.  Anemia often causes fatigue, weakness and poor concentration.   Liver and organ meats are great sources of iron, but there are a variety of foods and ways of combining foods with vitamin C that can help raise iron levels, too.

Fiber:

Most Americans are getting less fiber than recommended, and getting enough fiber can be even more challenging on a gluten free diet, since many high fiber cereals, breads and bars are off limits.   Fiber is best known for its help keeping people regular, but it is important in helping lower risk of heart disease and diabetes, too.

So what’s a gluten free gal (or guy) to do?

  • Take a (gluten free!) multivitamin
  • Choose fortified gluten free products
  • If you avoid dairy products, find other calcium fortified beverages and other high calcium foods
  • Make sure you’re getting your Celiac serology (blood test) done yearly, and other #s, like vitamin D, iron, B12, folate, thyroid, etc. done every few years or as needed to avoid deficiencies.
  • Make sure you’re getting enough fiber!  Veggies, fruits, beans, flaxseed, and whole grain GF foods are a great source of fiber.
  • Consider speaking to a dietitian to help you trouble shoot and make sure you’re getting what you need.

Quick takes:

  • I’m doing a presentation for the Metro DC EDS Association on Digestion and Hypermobility and EDS on March 15th. If you have EDS or HSD and you’d like to attend, email me for more information.

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.

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Feb- G-free Digestive updates

Many of you know that I love research! There are so many neat digestive health studies on Celiac disease, IBD and more.

Chocolate Banana Bread...nom nom!
Chocolate Banana Bread

But before we get there, here are some gluten-free Valentine’s day recipes from GF Jules.

I’ve also posted one of my long-time favorites: Chocolate Banana Bread, which is low FODMAP and gluten-free.

Here’s a quick research roundup for your reading enjoyment, and I wanted highlight a webinar from the Center for Celiac Research has a webinar that looks great (free!!) on the emotional burden of juggling multiple autoimmune illnesses on Feb 11th. Register here.

New study on screening children for Celiac shows that Celiac is more common in people without classic risk factors.

Notably–

  • only 30% had “classic” symptoms, i.e. digestive discomfort
  • only 10% had a family history of Celiac

Most would not have been caught by current typical practices for screening for Celiac. This calls into question whether mass screening is appropriate.

New study on patients with autoimmune issues who get COVID–the conclusion:

“Patients with AICID are not at increased risk of severe COVID?19 with the exception of those on corticosteroids. These data suggest that patients with AICID should continue on biologic and nonbiologic immunosuppression but limit steroids during the COVID?19 pandemic.”

Translation–patients with Celiac, autoimmune thyroid, IBD, psoriasis, etc. don’t seem to be at increased risk of COVID if they don’t have other risk factors like steroid use.

A low FODMAP diet helps with IBS D (with diarrhea)—moreso than traditional diet advice for diarrhea.

IBD (Crohn’s, UC)—here’s a quick roundup from the recent Crohn’s and Colitis Foundation Conference:

  • One looked at SCD vs modified SCD vs a normal diet. Both versions of the SCD were helpful…and on average, no major difference between the two.
  • Another diet that was discussed was the Crohn’s disease exclusion diet, or CDED, which was shown to be more helpful than EEN, AKA Exclusive Enteral Nutrition, or only formula, especially when looking long term. This is significant, since EEN has been seen as the gold standard in the past.
  • Another study looked at the Mediterranean diet and SCD and in people with mild to moderate Crohn’s. They defined Mediterranean diet as having lots of fruits, vegetables, nuts, and grains; moderate fish, poultry, and wine; and limited red and processed meats and sweets.

Cheryl Harris, MPH, RD is a Registered Dietitian Nutritionist and Certified Wellcoach in Fairfax, VA.  She helps adults 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.

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Chocolate Banana Bread

Chocolate Banana Bread...nom nom!


Chocolate Banana Bread: Gluten-free, low FODMAP and delicious!

This recipe dates back to the days when I taught cooking classes with children, so it’s been around a long time! It was upgraded to be chocolate, then gluten-free. It’s a delicious treat for breakfast or dessert, keeps well and is simply delicious. It’s also high in fiber and has a good amount of protein, calcium, and iron, especially if you use teff or sorghum flour.

Wet ingredients:

2 medium-sized ripe bananas
1/3 cup olive oil

2 omega-3 eggs
1 cup sugar
2 teaspoons vanilla extract
1/2 cup Greek style yogurt or lactose free, flavored or unflavored

Dry:

2/3 cup sorghum, teff or rice flour
2/3 cup cocoa powder
2/3 cup cornstarch or arrowroot
1/2 tsp salt

½ tsp cinnamon
1 tsp baking soda

1/2 cup chopped walnuts or pecans, optional (omit if on the FODMAP elimination phase)

To flour the pan:

  • 1 Tablespoon sugar
  • 1 teaspoon cocoa powder
  • ½ tsp cinnamon

Preheat oven to 350. Grease a 9 X 5 bread pan, and then dust with the cocoa/sugar mix. Reserve any extra for a topping.

Put the peeled, ripe bananas in a plastic sealable bag, seal it and squish the bananas until mostly smooth (this step is perfect for little helpers!). When done, squeeze the contents into a medium-sized bowl. Add in the rest of the wet ingredients and stir well. Mix dry ingredients together, then combine wet and dry and mix thoroughly. Stir in walnuts.

Add batter to prepared pan and bake about 60 min or until a toothpick comes out clean. Sprinkle with remaining sugar if desired.

Serves 12.

Low FODMAP note—both banana and cocoa have fructans. However, if you stick to one slice, the quantity falls within the allowed amount—but don’t have the nuts, too!

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Happy G-Free New Year ’21

Happy New Year…here’s to a happy, healthy 2021.

Let’s start off with the most common question I’ve heard in the last month re: recommendations for adults. VACCINES!

Yes, if you have Celiac, you can get the vaccine– there aren’t reasons for concern. Here’s a statement from SSCD. “There is no evidence to suggest that people with Celiac disease would be more prone to an adverse effect of vaccination.”

FWIW, the same guidance exists for those of you reading this with IBD: get the vaccine! “The bottom line, she said, is that ‘it’s much safer to get a vaccine than it is to take your chances of getting COVID-19.'”

Or, if reading a Tweetorial is more your thing, here’s a good one:

If you’ve got IBS, there’s no specific guidance, but the best bet is the same: get vaccinated!

Worried because you have food allergies? (not allergies to vaccines/vaccine components). That shouldn’t be a problem. Really. “People with common allergies to medications, foods, inhalants, insects, and latex are probably no more likely than the general public to have an allergic reaction to the mRNA COVID-19 vaccines”. MCAS may be a different story, though, and there’s inadequate research, so do speak to your doctor.

Oh, and the other question I get. Given that I, personally, have a ton of autoimmune diseases and food intolerances, am I going to get the vaccine?

YES!!! Yes I am. YES! As soon as I can.

I hope you do, too.

As always, do check in with your health care team…

  • For those interested in Crohn’s and UC, there’s a patient education event online on Jan 30th
  • For GI RDs/colleagues–this is a wonderful article on GI disorders an eating disorders. The crossover is huge and significant, and affects the whole range of GI disorders, from Celiac to IBD to IBS and GERD. Eating disorders and disordered eating isn’t only weight loss–sometimes it’s fear of food. If this speaks to you as a patient, give it to your doctor.
  • For my RD colleagues or GIs, fantastic article from Kate Scarlata, MPH, RDN and Emily Haller, MS, RDN on the value of RDs to a GI practice
  • Healthier gluten free habits webinar with the wonderful Melinda Dennis, MS, RD…more info here
  • New year, new healthy habits? I hope so! I recorded a short mindfulness meditation video of awareness of senses. It’s a nice way to pause and take a break.  

Cheryl Harris, MPH, RD is a Registered Dietitian Nutritionist and Certified Wellcoach in Fairfax, VA.  She helps adults 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.

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G-Free Holidays ’20

Contamination/news/lots of recipes

Oatmeal with apples

Before we get into seasonal goodness, I’d like to highlight a wonderful video from Gluten-free Watchdog which is well worth your time! If you aren’t already a member, I also  encourage you to join. Below are highlights of the video, but I absolutely recommend you to watch it in full for many of the details around gluten testing:

Of 4% of foods tested are out of compliance—which means 96% are compliant.

THIS IS STILL TOO HIGH!

The problematic foods are often grain-based foods–

  • 79% problem foods are grains
  • Of the problem foods, 45% are oat products

For oat products, choose only purity protocol oats. These are going to be the safest options.

Careful of lentils—they often have cross contamination. Look for ones that are purity protocol. New brands are out there, such as Avena foods, and keep your eyes open for new ones.

New problem—facial misbranding.

Marshmallows, naturally gluten-free. See below for recipes

Facial misbranding=products marked GF, but aren’t.

This is why we need to always read products carefully.

If there are problems, they must be reported to the FDA!

Again, the full link is here: https://www.glutenfreewatchdog.org/news/lessons-learned-from-16-years-of-testing-food-for-gluten/

More news:

Kate Scarlata has a great overview of where oats fit for a GFD

A wonderful upcoming webinar on mental health on a gluten-free diet on Dec 17th (free!)

Crohn’s and Colitis foundation has devoted their whole issue to diet and IBD this month. I’d recommend reading the whole thing, actually, if it’s a topic of interest. But if time is limited, I think the 2nd (Kelly Issokson’s) encapsulates the current understanding particularly well.

Strawberry meringue tart
Strawberry meringue tart

Holidays are here:

On an entirely different note, I always share holiday recipes. Here’s a list of naturally gluten-free recipes, which includes many of our favorites.

A new one I’ll be adding to the list—Strawberry meringue tarts.

And here’s a list of low FODMAP holiday recipes. Remember, they are only low FODMAP if you’re eating the recommended maximum portions.

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Strawberry Meringue Tarts

AKA Kitchen therapy

I don’t know about you, but when I am stressed, I retreat to my kitchen. I have had enough of COVID. I am not a fan of cold weather. So I needed a mental health afternoon. Normally I play with strawberries most during June when we have them in the garden, but this is what was calling to me, and I adapted a few of our standard recipes and is what happened.

Strawberry meringue tart

These are adorable, gluten and dairy-free, lactose-free and as a bonus, they are low FODMAP. They do not transport or keep very well—but they should disappear quickly, so that point should be entirely moot.

Enjoy.

Makes 6, 4-inch tarts

Tart crust
1 1/4 cups GF all purpose flour (I’ve used Jules GF and also King Arthur measure for measure)

2 TBSP almond flour
1/4 cup granulated sugar
1/4 tsp. salt
8 tbsp. (1 stick) cold unsalted butter, cut into 1/4-inch cubes

1 egg yolk
2 tbsp. very cold water
1 tsp. vanilla extract

Strawberry Meringue Tart inside
Strawberries inside!

Pulse dry ingredients with butter, then add yolk, vanilla and cold water. Chill dough for at least an hour in wax paper, can be done left in the fridge overnight as well.

Roll out on wax paper, press into tart pans. Prick with a fork in several places. Bake at 375

8 min covered, using pie weights (anything metal and sturdy works). Then bake for another 7 minutes. It may need 1-2 minutes more, until it is a *light* golden brown.

Filling

  • 4 cups =2 cups pureed strawberries + 2 cups sliced (separated)
  • 2 T cornstarch
  • 1/4 cup water
  • 2/3 cup sugar

Puree 2 cups strawberries. Whisk water and cornstarch, add in strawberry puree. Heat on medium, whisking well, until boiling. Boil for 1 minute, whisking the whole time. Remove from heat. Allow to cool.

Place the other sliced strawberries in the tart shells, pour the strawberry filling evenly on top.

Meringue

  • 4 egg whites
  • 1/8 tsp cream of tartar
  • ¼ cup granulated sugar
  • ¼ tsp vanilla extract

Bring egg whites to room temp. Whip the egg whites and the cream of tartar until soft peaks form, ~5 min on high speed. Add sugar 1 TBSP at a time until you have stiff peaks, ~ 2 min more, then add vanilla. Pipe out in circles onto the tarts.

Bake for 12 minutes at 350 in the middle of the oven, or until the tops are nicely browning.

Enjoy right away. This is the easiest step.

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Happy G-Free Holidays

I hope you’re having a cozy December! I’ve collected a list of NATURALLY gluten-free desserts—tried and true recipes that aren’t specialty cooking, but just happen to be marvelously, naturally gluten-free.

Remember, these foods are only GF if you use GF ingredients. And as always, check labels to avoid surprises. A surprising number of chocolates may contain traces of gluten, including Lindt, Ghiradelli, Godiva and many of the Trader Joe’s options. I’ve got lists of chocolates listed gluten-free here and here.

This list has a range of options, from allergy-friendly, grain-free, low sugar to completely decadent options. Your call! There are enough options to choose from that you can surely find something that works for your lifestyle/food restrictions that you and your family can enjoy together.

Low FODMAP? I’ve italicized recipes that are FODMAP friendly, and or easy to adapt and I have a longer list of low FODMAP holiday treats here. Remember, portions matter.

Italicized=low fodmap (watch portions) dairy free (DF), egg free (EF) and soy free (SF), NF (nut free) *=check labels

The Washington Post even has a  “Cookie Generator” with a gluten-free option. Of course, you need to make sure the ingredients are be mindful of cross contamination, etc. but this is an easy way to keep traditions without venturing into specialty flours and unfamiliar territory.

My personal favorites? My Bittersweet Chestnut Fudge and my Vegan Pralines.

And for my low FODMAP friends, more recipes here: a round-up of low FODMAP holiday desserts. Just watch the portion sizes.

Oh, right, and there’s holiday food, too. I’ve got a G-Free Turkey and Ham list.
And along those lines, I’ve got some of my  favorite tips for a balanced and delicious holiday season here.

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, 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.

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