Someone recently posted in the Celiac support group this cry for help:

I don’t eat gluten, sugar, dairy, haven’t had a soda of any kind in 8 years, haven’t had red meat in 3 years, I eat super clean and I only drink alcohol maybe 10xs in a whole year and it’s only 1 or 2 glasses of champagne or hard cider when I do. I workout regularly and I’m still gaining weight! I’ve tried everything, prescription diet meds, intermittent fasting, keto, WW, be balanced, 20 other diets that I won’t bother mentioning, personal nutritionists/trainers. Nothing has worked! I’ve actually gained weight! I can’t/won’t spend another dime on another “diet”! Something is wrong I’m convinced! I already know I’m lactose intolerant, I have celiac disease, diverticulosis, and I had my gall bladder removed about 10 years ago. Now I’m starting to get depressed by all the effort and NO results. Can anyone relate to this? No one in my world can. I’m feeling very alone in this fight.

ANON

This battle and frustration are nothing new to me. You might have recently read my post on things unsaid, what I wished I had said to doctors and medical specialists over the years.

To physically heal the ravages of Celiac Disease on my body, I finally have had to accept some radical lifestyle choices that go much further than simply eliminating gluten from my diet:

• I accepted that I was getting cross-contaminated by many foods, including coffee.
• My allergy to bananas and egg yolks had to be taken seriously, and my inability to digest soy and corn easily.
• While I am not lactose intolerant, there are many kinds of cheese that I cannot digest, and I need to avoid them. Likewise, I changed to a vegan protein drink rather than my yummy protein whey.
• I had to accept that my liver struggles to process fat and lower my fried foods and fatty meats intake.
• And I finally gave in to trying a low FODMAP diet because the other changes did not have enough effect.

The need for more education: cross-contamination

Even now, the hardest part is the challenge of cross-contamination.

I long ignored that going to a restaurant and asking for a salad was putting me in danger, and yet I would spend 7-10 days after a meal out with bloating, diarrhoea and unable to sleep deeply. Obviously, I wasn’t doing enough.

I also ignored that gluten shows up in foods in many unexpected ways! Sausages and hamburgers are often made with wheat (bread crumbs) or malt extract (barley) for flavouring.

Foods might not have “wheat” as an ingredient but might have “yeast extract”. Unfortunately, you have to pay close attention to its kind of yeast, as not all yeast is gluten-free. Some might be a barley extract, and that is definitely not gluten-free!

Soy sauce, for example, is most often made with wheat! Yes, I know it says “soy” sauce. But unless it specifically states that it is gluten-free, it probably has wheat.

Another thing to look out for is the blanket ingredient “natural flavours”. Often, this refers to malt extract made from barley. Tastes spectacular unless you have celiac disease.

The biggest challenge: packaging plants

I find this is the most challenging concept to explain to people who don’t realize that “allergy” might not refer to anaphylactic shock. It’s pretty standard for something like oats or rice to be packaged in the same processing plant as wheat or other grains. They can be cross-contaminated if packaged on the same lines or even in the same building as gluten products.

You will see warning labels like “may contain nuts” on some packages.

The ingredients of what you are eating do not contain those nuts or allergens. However, as they are processed on the same lines or in the same area as those allergens, they are not considered safe.

Certified gluten-free:

For food to be certified gluten-free, it has to contain less than 20 particles per million (20ppm). If we were talking days, that’s 20 days versus 2,737 years. That’s what it means for something to be certified gluten-free!

Most celiacs only eat certified “gluten-free” products, irrespective of the additional expense. But I check every label – just because it’s risotto doesn’t mean that I can assume it’s safe for me! Here are two examples of gluten-free risottos that I would buy.

It took me a long time to accept that a product (Chinese rice noodles) whose ingredients were “rice, water” might actually be cross-contaminated. That was something I didn’t want to give up!

But, the brand that I like for rice noodles also makes egg noodles, udon and ramen (all made from wheat). So, as they are not marked as gluten-free, it is probable that they are produced on the same equipment as the rest of the noodles.

Feeling isolated and alone.

The challenge of eating out

Most people (including restaurant staff) don’t understand the challenge of eating out with Celiac disease. It’s not as simple as ordering a salad or choosing a food that doesn’t have wheat as an ingredient.

It comes back again to cross-contamination.

Most sufferers of celiac disease read every label of every ingredient that goes home with them from the supermarket. There is not a single ingredient in their kitchen that is cross-contaminated.

We can’t do this in a restaurant. And we have to trust that when staff say they understand cross-contamination, they aren’t simply talking about not putting bread on my plate!

• Are they changing gloves between preparing another food and my gluten-free?
• Is the surface dedicated to gluten-free or absolutely washed down in between preparation?
• If something is deep-fried, is the fryer dedicated gluten-free? Or did they just fry some breaded chicken or mozzarella sticks?
• Did they throw some croutons on the salad next to mine, and crumbs accidentally fell on my lettuce?
• Did they use a pan for cooking my food that previously was used for a sauce made with flour?

Of course, you are considered “difficult” and even rude if you ask these questions at a restaurant.

Avoiding invitations from friends

These same considerations apply when we receive invitations from friends or family for dinner or a special occasion. It’s not enough to tell us that we’ll “be fine” or “just have a little”.

Even when you say, “but I made it without wheat, “we must trust that you cleaned down your kitchen, didn’t use pots or pans that might be contaminated, and each ingredient you used was entirely gluten-free.

My experience of eating gluten:

Here’s the rub:

I won’t go into anaphylactic shock from eating a crumb of gluten at your party. Tonight, however, I will start to feel queasy and bloated.

This bloating will probably last two or three weeks. That means that every meal I eat in the next two to three weeks will feel awful and not enjoyable.

In a day or two, I will start to get dermatitis herpetiformis. These are itchy blisters that will last for a few days. For me, they show up on my fingers. Others might get them on their elbows or knees. They itch horribly, and if I scratch them, it’s worse.

That’s nothing compared to the diarrhea that last two to three weeks. For some people, it begins within an hour or two of eating gluten. Some of us are lucky, and it begins a couple of hours later, so we have time to get home.

Add to this melee the broken sleep. For me, this is the worst part, because it is two to three weeks of waking up every hour or so with diarrhea and when the diarrhea overnight ends (after a couple of days), it’s broken sleep.

The broken sleep leads to irritability and brain fog. And now, I’m pissed and disoriented and completely unproductive.

The worst part is that who really pays the price is people around me. I know that I am irrationally angry and irritable. How do I protect people around me from this? It’s not an emotional response, it’s a whole-body inflammation that bubbles up emotionally as anger. But I’m not actually angry.

And then family and friends get upset because we self-isolate for three to four weeks until the irritability is gone. We didn’t do it for ourselves. We did it to protect others from biting heads off when we really didn’t mean to.

Then there’s the part that I don’t consciously experience: my immune system attacking the healthy cells of my small intestine! This is why it’s an auto-immune disease – when the immune system attacks the body itself. The effect – long-term – is that the villi of the small intestine (that helps with the absorption of nutrients) are destroyed, you get ulcers, and you can develop cancer.

So please show a little understanding when we turn you down.

I’m sorry about that little invitation for dinner, but it’s just not worth it!

I’m unwilling to give up the next two to three weeks of my well-being just for lunch or dinner at someone’s home or restaurant.

We already know that the restaurant will not allow us to take our own gluten-free food. Most of us have borne the brunt of a family member or friend that says, “you’re over-reacting”, when we say we can’t just take the croutons off the salad.

give me some options

A very acceptable option for someone with Celiac Disease is to invite us to join you and ask us to bring our own food if that would make us more comfortable. Believe me, we will not be offended! In fact, we will truly appreciate your thoughtfulness and understanding!

If you are buying certified gluten-free, let me know what those options are and what steps are being taken to avoid cross-contamination in the kitchen. For example, cooking in disposable baking trays. That will allow me to relax and enjoy what I’m eating.

Otherwise, suggest getting together and cooking together at my place! You can buy all the natural ingredients (fruits, vegetables and meats – not seasoned!) and let me buy all the seasonings and sauces that I need to read the fine print on! My kitchen will be completely gluten-free, and we can enjoy a meal together! Please don’t bring anything with gluten to my house because I’ll be pretty upset if my kitchen gets contaminated. No offence intended, but I’ve worked hard to rebuild my health!

Do you remember how I mentioned coffee?

There are a couple of possibilities:

• Cross-contamination – remember those shared facilities and processing lines? That’s a possibility.
• Flavoured coffees – those unique coffees possibly contain malt extract and other flavourings. These coffees may be responsible for the cross-contamination I just mentioned.

On the other hand, it’s also possible that an inflamed and irritated gut is sensitive to coffee! Some people get the runs with coffee, which can be hard on your gut.

So, that invitation to just “grab a coffee” might not be met with great excitement by your friend with celiac disease.

My suggestion: make sure that the invitation is clear that it’s coffee or something celiac friendly for them. If possible, suggest that they choose the place, as they will probably have a better idea of where it’s safe to grab a coffee.

Supporting your friend or family member with Celiac

Any auto-immune disease or chronic illness takes a physical and emotional toll. There’s also the mental health toll that we don’t talk about due to illness uncertainty.

Each week has its own challenges. There might be weeks or even months of feeling better and then suddenly finding yourself back in the hole, with no apparent explanation of what you did wrong. You can provide the best support by asking questions to better understand their journey and personal experience.

As you might have noticed from the snippet I opened this blog post, this isn’t a linear journey. My journey has certainly had its fair share of ups and downs.

Questions that you might ask to understand better:

• Where do they feel safe eating and getting together?
• How can I include you and respect your safety needs?
• What kinds of foods or ingredients can you buy that they will enjoy?
• Can they drink and enjoy coffee, tea, wine and other drinks, or are there restrictions you should know about?
• Do they have any different sensitivities or allergies apart from gluten?

If you have friends or family with children with Celiac Disease, understand the challenges they face telling their 3-year-old that they can’t eat the same food and goodies that other children are eating!

Suggestions:

• Instead of food goodies, have toys or other unique gifts for all the kids equally.
• If you’re doing an Easter egg hunt or something of that sort, have a particular colour or identification of that child’s special treats so that they can participate while knowing that all of their goodies will be safe.
• If you’re doing pizza or something of that nature, buy a small gluten-free pizza for that child and use a disposable baking pan for the next.

Things we don’t talk about

There are many challenges that your friend or family member with Celiac is probably not sharing!

Because it’s a chronic illness and they will be living with this for the rest of their lives, they don’t want to complain about it to you. You don’t want to hear about how sick or poorly they are doing still after ten years.

You may start to feel like they aren’t entirely open with you or that they are pulling away. And in some ways, it’s true.

Because they can’t be totally open about the ongoing struggles (no one wants to hear about this anymore), they shut themselves away from everyone and pull back into themselves.

If you genuinely care, you’ll need to let them know that it’s okay to talk about the bad days and weeks and the uncertainty they are experiencing living with chronic illness. This may be ongoing for the rest of their lives as they navigate living with new boundaries.

Unfortunately, there is a high probability that they aren’t going to “just get over it”.