Have you followed the recommendation of a healthcare practitioner and completely changed your diet to be gluten-free?
Only to realize it made no change in your symptoms.
You’re not alone. Many people jump on the gluten-free bandwagon with hopes that it will be a cure-all. Why do some people seem to improve on a gluten-free diet while others notice no change?
Unfortunately, it’s not as simple as removing gluten from your diet. Consider that one study found only 8% of adult celiac patients reached healthy levels of gut inflammation (histological normalization) after following a gluten-free diet for 16 months. Did you catch that? Only 8% of adults actually recovered their gut health to “normal” levels following 16-months of a gluten-free diet. (1) Another study found that only 34% of participants had a healed intestine after following a gluten-free diet for 2 years. (2)
Why is a gluten-free diet is not helping improve many people’s symptoms?
There are a lot of reasons why your gluten-free diet may not be working. In this post, I’ll address 5 of the most common reasons why.
1. Cross-reactive proteins
In the clinic, cross-reactive proteins are the most common culprit behind why one does not get better after starting a gluten-free diet. Cross-reactivity occurs when your body mistakes seemingly normal foods for gluten.
Imagine that the gluten protein is shaped like a triangle. For the sake of this example, let’s also assume you’ve been tested and you have non-celiac gluten sensitivity. Your immune system is always on the lookout for triangle shaped gluten proteins because it knows you’re allergic to them. Cross-reactive proteins are proteins that also resemble triangles. This confuses your immune system. The immune system will react to these triangle shaped proteins as though they were gluten – causing similar symptoms to when you eat gluten.
Said in a more medical sense, your adaptive immune system makes antibodies that are specific to particular pathogens. If you’re allergic or sensitive to gluten, your body will have made antibodies that are specific to the gluten protein. Whenever you ingest gluten, the alarm bells go off and your immune system makes antibodies to fight gluten. The stomach pain, skin rashes, diarrhea/constipation, brain fog etc. you experience are the effects of your increased immune system attacking gluten.
Unfortunately, our immune system doesn’t have 20/20 vision. It’s a little nearsighted. It sometimes confuses other foods for gluten. If we refer back to our triangle example, the immune system increases inflammation to do battle with all food proteins that resemble a triangle.
This is a potential reason why you may not be getting better on a gluten-free diet. In fact, one study found that nearly 50% of those with a gluten allergy also had a dairy allergy or sensitivity. (3)
What foods cross-react with gluten?
How do you know your immune system is creating cross-reactive proteins?
Unfortunately, you won’t be able to feel this. If you’re not noticing any change in your symptoms on a gluten-free diet, there’s a strong likelihood cross-reactive proteins are to blame.
In order to know (with certainty) which foods are triggering a reaction in your body, I recommend running the array 4 blood test done by Cyrex labs. This test will determine exactly which foods your body is confusing for gluten. A more cost-effective option (though not as accurate) is to remove all of the cross-reactive proteins for at least 30 days. Then, reintroduce them, one at a time.
2. Cross-contamination & sneaky sources of gluten
Another common reason why people don’t get better on a gluten-free diet is that they’re not 100% gluten-free. Being 100% gluten-free is more challenging than it seems. It’s far more than avoiding breads, pastas, and flours.
Did you know that gluten is often found in cosmetics, vitamins, supplements, lipsticks/lip balms, play-doh, and even prescription medications?
To further complicate the issue, gluten isn’t always listed as gluten on ingredient lists. In this post, I go through (in great detail) all of the aliases gluten goes by on ingredient lists. To ensure you’re 100% gluten-free, I recommend completely avoiding all of the ingredients found on that list.
Another common problem found in those new to the gluten-free diet is something called cross-contamination. Cross-contamination occurs when a naturally gluten-free food comes in contact with a food that contains gluten. This often occurs during the stage of processing or packaging. For example, oats are naturally gluten-free. However, if they are processed at a facility that also processes bread or other gluten-containing products, it’s likely that those oats have come in contact with gluten and are no longer gluten-free.
To best avoid this cross-contamination, ensure all of the grains your purchase are certified gluten-free. This guarantees your product has not come in contact with gluten. If you think this sounds neurotic, consider that a study of 22 naturally gluten-free products found that 7 of 22 samples contained more gluten than is allowed in the proposed rules for gluten-free labeling in the US. (10)
If you’re the only gluten-free family member in the household, cross-contamination becomes a serious concern. In this situation, I recommend those with celiac disease or gluten sensitivity have their own designated gluten-free cutting board. Plastic or wooden kitchenware should be designated gluten-free. The gluten protein can get lodged in scrapes/cracks in the cookware and cause cross-contamination. Stainless steel, aluminum, ceramic and other non-porous cooking utensils/surfaces will need to be thoroughly cleaned between uses. If your household still uses gluten, cross-contamination is likely to occur at some point.
3. Leaky gut
Intestinal permeability or leaky gut is a term used to describe the condition of one’s intestines being hyperpermeable. Imagine your digestive tract (intestines) to be like cheesecloth. A healthy intestine will only allow small particles through the cheesecloth (gut) and into the body. When we have a leaky gut, it is as though the cheesecloth has large holes punched through it. A leaky gut will allow large particles to enter the body. This can include undigested food molecules, yeasts, bacteria, toxins, etc. In a healthy gut, none of these large particles would be allowed entry to the body.
A 2008 study tested for leaky gut in 22 Celiac and Crohn’s disease patients who were on a gluten-free diet for 1 year. They found these patients following a gluten-free diet still had a much leakier gut compared to healthy controls. (11) Another study showed that celiac patients had persistent leaky gut even if they were on a gluten-free diet for the long-term. (12)
Recent research suggests that intestinal permeability contributes to food allergies and sensitivities. (13, 14) If you’re not noticing an improvement after eliminating gluten from your diet, you could be reacting to other foods. And it might not be related to cross-reactive proteins.
Leaky gut can cause allergies or sensitivities to any variety of food. If you consumed wheat or gluten products for a number of years before learning about your allergy, you’re likely to have a leaky gut. In this case, the simple avoidance of wheat will be unlikely to resolve your symptoms. Healing of the leaky gut will become an essential part of the treatment plan.
Please look to my upcoming blog on how to heal a leaky gut for the most up-to-date information.
4. Bacterial overgrowth
SIBO or small intestine bacterial overgrowth is a condition characterized by excessive bacteria in the small intestine. SIBO is a common cause of irritable bowel syndrome (IBS). I’ve written at length about SIBO and it’s connection to IBS here. Irritable bowel syndrome aside, SIBO can also be the reason why you’re not feeling better on a gluten-free diet. One study done by the British Medical Journal found that nearly nineteen percent of patients with celiac disease also had SIBO. (20, 21)
The most common symptoms of SIBO include: (22)
- Abdominal pain/discomfort
- Bloating and abdominal distention
- Gas and belching
- In more severe cases, there may be weight loss and symptoms related to vitamin/mineral deficiencies.
If you’ve not improved on a gluten-free diet, I’d recommend working with a knowledgeable functional medicine practitioner. A simple breath test can determine whether or not you have SIBO. Treatment remains a challenging endeavor that needs to be guided by an experienced practitioner.
I’m not sure why practitioners choose thirty days as the proper amount of time to see if a gluten-free diet works. I don’t believe there to be any research corroborating this time frame. While thirty days may be enough time for your friend to notice a change, you may be a slow responder. In the case of dermatitis herpetiformis and other skin-related symptoms caused by a gluten allergy, it is not uncommon for symptoms to persist for 6-12 months following the removal of gluten.
If you noticed no change in your symptoms after strictly adhering to a gluten-free diet for thirty days, your body could need more time.
What should you do if you’re not getting better on a gluten-free diet?
I’d strongly encourage you to find a knowledgeable functional medicine practitioner to work with. This alone will help remove much of the guesswork. If that is not an option, follow my three DIY steps in the listed order:
- Go through ingredient lists.
- Ensure there are no hidden sources of gluten getting into your diet.
- Be sure to check your medication.
- Stick with the gluten-free diet for more than thirty days.
- In my experience, six months is the ideal duration.
- Remove cross-reactive proteins.
- If you’ve noticed no change after six months on a strict gluten-free diet, remove all of the cross-reactive proteins.
- Follow a gluten and cross-reactive protein-free diet for 3-6 months before reassessing whether or not it’s effective.
If after following the above three steps you’re still noticing no change, it’s time to investigate the health of your digestive tract. This includes testing for SIBO, leaky gut, and other bacterial or pathogenic infections.
Ok, now you know the 5 top reasons why you’re not getting better on a gluten-free diet.
It’s time to hear from you!
What helped improve your gluten-free diet?
Also published on Medium.