Not Feeling Better After Going Gluten-Free for Celiac? Here’s why...

Not feeling better after going gluten-free for celiac? Not seeing results after a celiac diagnosis can be normal. Here’s why it might be happening.

Why You're not Feeling Better After a Celiac Diagnosis

If you’re not feeling better after going gluten-free for celiac there is a lot to explore. A dietitian can help with this to determine if it’s celiac-related or if something else is going on. Below are general questions I’d consider. We’ll dive deeper into each later.

  • When were you diagnosed?
  • When is the last time you had a follow-up celiac panel?
  • Were you diagnosed with any nutrient deficiencies at diagnosis?
  • What, how much, and when are you eating?
  • Do you have hunger and fullness cues? Are they reliable? Do you listen to them?
  • Are you avoiding any foods other than gluten?
  • What do your current gluten-free label reading habits look like?
  • What do you current gluten-free cross-contact precautions look like?
  • Are you practicing self-care? What does your stress management look like? How about sleep? What about movement?
  • How are you balancing socializing with your needs?
  • What kind of emotions do you have around your diagnosis?
  • Are you drinking enough water?
  • Have you had follow-up general labs done?
  • Have you brought this up with your doctor? What did they say?

This long list of questions doesn’t cover everything but it’s a place to start. Let’s explore each question more.

Not Feeling Better After Going Gluten-Free for Celiac Here’s why...​ ​Why You're not Feeling Better After a Celiac Diagnosis​ - Tayler Silfverduk, celiac dietitian

When Were You Diagnosed With Celiac?

If you’re not seeing results after a celiac disease diagnosis, one of the first things to consider is when were you diagnosed. Cutting gluten out can do a few things to your body. It can cause healing in itself can trigger symptoms, can cause gluten withdrawal and more.

First, if you’re feeling worse going gluten-free know that is normal. Some people report feeling withdrawal-like symptoms during the first few days or weeks of avoiding gluten. This is what people call Gluten Withdrawal.

Symptoms of gluten withdrawal include:

  • anxiety
  • bloating
  • constipation
  • stomach cramps/pain
  • headaches/migraines
  • irritability
  • brain fog
  • fatigue
  • diarrhea
  • vomiting
  • nausea
  • and more…

Typically it takes a few days for gluten to “detox” out of the body. However, it can take your autoimmune system a few weeks to a few months to normalize. If you’re concerned with how long your gluten withdrawal symptoms are lasting, let your health care team know. It could be a sign of something more serious going on. 

Second, if you’re not feeling worse but aren’t feeling better know that is normal too. It can take anywhere from a few weeks to a few months to feel better after going gluten-free.

This is because your body needs time to heal from the inflammation and damage from gluten. And healing can cause a cascade of symptoms on its own. Symptoms like feeling super hungry, difficulty focusing, and more.

Additionally, not only does your body need time to heal but you need time to adjust to a celiac diet (spoiler-alert, you won’t be perfect at it overnight).

Symptoms of Gluten Withdrawal - How long does gluten last in your system? How long does gluten withdrawal last? Not Feeling Better After Going Gluten-Free for Celiac Here’s why...​ ​Why You're not Feeling Better After a Celiac Diagnosis​ - Tayler Silfverduk, celiac dietitian

What Kind of Follow-up Testing Have you had?

If you’re not feeling better after a celiac diagnosis, the next question is have you had any follow-up celiac testing? This will help determine if your body is responding to a gluten-free diet and if any potential nutrient deficiencies have normalized.

For reference, after diagnosis, you should have a celiac panel done every 3-6 months until normalized. Additionally, other labs used to assess nutrient deficiencies should be monitored as needed until normalized as well.

If your follow-up testing is coming back normal, then it’s time to look at other causes for why you’re not feeling better after.

Not Feeling Better After Going Gluten-Free for Celiac Here’s why...​ ​Why You're not Feeling Better After a Celiac Diagnosis​ - Tayler Silfverduk, celiac dietitian - celiac follow up testing

What, When, and How Much are you Eating?

If you’re not feeling better and your labs aren’t normalized, now it’s time to look at what, when, and how much you’re eating.

When it comes to what you’re eating, we need to look at if gluten is sneaking in somewhere. We also need to look at if you have any food rules preventing healing and if you have any food intolerances.

Food intolerances are common during healing with celiac because of impaired digestion related to gut damage. Assessing and removing foods you’re intolerant to as you heal can help you feel better faster.

It’s important to get the help of a dietitian with this. There is a strict protocol for assessing food intolerances and it’s important they are monitored as they aren’t always forever.

What you’re eating aside, it’s also important to look at how much you’re eating. When it comes to celiac, there is a lot of gut repair needed. That takes extra work for your body which means it’s essential for you to be eating enough.

And before you write this off, I want you to be brutally honest with yourself. About 90% of my clients come to me thinking they are eating enough and about 70% of them aren’t. Your body needs energy to heal, make sure you’re giving it.

Building on if you’re eating enough, the brings us to when you’re eating. Are you eating consistently and routinely throughout the day? Are you eating when your body is hungry? Do you eat when you don’t feel like it but know you should?

Which brings us to your hunger are fullness cues…

Are you eating enough to heal celiac? Not Feeling Better After Going Gluten-Free for Celiac Here’s why...​ ​Why You're not Feeling Better After a Celiac Diagnosis​ - Tayler Silfverduk, celiac dietitian

Do you Have Hunger and Fullness Cues? Are They Reliable? Do you Listen to Them?

As I mentioned above, if you’re not feeling better after eating gluten-free for celiac, it’s important you make sure you’re eating enough to heal.

Part of knowing if you’re eating enough means tuning into your body. It means listening for hunger and fullness cues.

This is often hard for celiacs as hunger and fullness cues were often masked for so long by bloating, constipation, nausea, pain, and more. And if you haven’t been able to listen to your hunger and fullness cues, often your body tries to save energy by not sending them as often.

However, these cues are essential to know if you’re eating enough for healing. Contrary to popular belief, your energy needs aren’t the same every day. Your body is not a set equation.

So if you don’t have hunger and fullness cues, if they aren’t reliable, or you are having trouble listening to them, your healing depends on your reigniting them.

A celiac dietitian (like myself) can help with that. Click here if you need my help.

What do Your Gluten-Free Lifestyle Habits Look Like?

If you’re not improving after going gluten-free, it’s important to take a look at your gluten-free lifestyle habits. Gluten is sneaky and it likes to push its way in wherever it can.

If you are worried about gluten sneaking in it’s important to take a hard look at your current gluten-free diet. A celiac dietitian can also be helpful in identifying any gaps in celiac safety.

Gaps in safety include: knowing what to look for on a food label, solid food label reading habits, proper cross-contact avoidance, is it in your medications, and more.

To put it bluntly, if gluten is still sneaking in, you’re not going to feel better.

 

What Does Your Self-Care Look Like?

How you feel after going gluten-free (and in general) largely depends on your self-care. And I know self-care has been talked into the ground. I know self-care has been overly romanticized but it is so important.

And self-care is especially important with celiac disease. Why? Let’s not sugar coat it, living gluten-free sucks. It’s restrictive and can’t feel isolating, overwhelming, frustrating, and downright exhausting.

And self-care can help you cope with feeling misunderstood, unsupported, frustrated, lonely, hangry, and sick. With as draining as celiac can be, it’s important you are keeping your cup full so there is something to drain from.

You have to make sure that you are taking care of you, first and foremost, so that you can advocate for yourself fearlessly and effortlessly

So what does your self-care routine look like? How do you destress? How do you calm yourself in stressful food situations? Do you move your body in an enjoyable way routinely? Are you eating enough? Do you get enough sleep? Are you drinking enough water?

If you’re not improving after a celiac diagnosis, take a cold hard look at your self-care habits. Are you neglecting any of the basic forms of self-care?

Not Feeling Better After Going Gluten-Free for Celiac Here’s why...​ ​Why You're not Feeling Better After a Celiac Diagnosis​ - Tayler Silfverduk, celiac dietitian

What Emotions do you Have Around Your Diagnosis? Body? Food?

Building on self-care, healing celiac disease also involves emotional work. It can be hard to take care of yourself physically if you’re battling your mind.

So what do your emotions around your celiac disease diagnosis look like? Have you grieved a life without celiac yet? Are you or have you been in denial about your needs?

What does your relationship with your body look like? Are you able to respect it even if you don’t like it? Has celiac changed your body image?

What about food? What does your relationship with food look like? Are you constantly trying to control it? Are you eating enough? Do you fear it?

If you need help with any of these things, it’s a sign you might need some outside help. I help all my clients with these things so if you need it, I’m here.

Have you Brought This up With Your Doctor? What did They say?

Lastly, if you’re not feeling better after going gluten-free for celiac, have you brought that up with your doctor? I’ve hinted at it before, but sometimes not feeling better might mean something else is wrong.

It’s important that if things aren’t improving you’re bringing it up with a healthcare provider. Getting help is undervalued but so important. Google, blog posts, Facebook groups, they do not take the place of individualized care from a trained specialist.

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