Celiac, Gluten Sensitivity, or Wheat Allergy?

This article is for general information and is not medical advice. Talk with your doctor before making changes to your diet, especially if testing has been ordered or discussed.

Eleanor snapped the plastic bag open. A refreshing watermelon scent filled the air for just a moment.

"This should be large enough," she murmured. She gazed at the kitchen counter. "Over there in the corner. I'll start there."

In a second, she was in the nook of the counter, and the box of saltines was headed toward the empty bag.

"Hey, Mom. How are you?"

Eleanor turned toward the entryway.

"Oh, Beth. Good morning, dear."

"What's going on here?"

"I was just doing a little cleaning out. I aim to clear these cupboards of anything that even looks like it might be gluten."

Beth approached her mother gingerly. "Oh. I see."

She set a paper cup on the counter and took the bag out of Eleanor's hand, folding it over once.

"Well, let me take that.

I brought us a nice ginger tea.

Let's have a cup and talk about this for a few minutes.

The day is young still, and I'll help you downsize a little bit if you want.

No worries."

Eleanor looked a little puzzled at her daughter's calm.

"You're not going to tell me I'm being ridiculous?"

"No." Beth pulled the notebook out of her bag and set it on the table.

"I'm going to tell you what I found after you went to bed."

"I don't want to sit here until Thursday doing nothing, Beth.

Something turned up at that appointment.

I'd rather be doing something about it than waiting for a phone call."

Beth opened the notebook flat on the table and turned it so they could both see.

"I kept going after we hung up.

There are three different things people are talking about when they say gluten, and they kept getting mixed together in everything we read last night.

That's why it felt like nothing made sense."

Eleanor sat down and wrapped both hands around the tea.

"Three."

"Three.

Celiac disease is the first one.

That's an autoimmune disease.

Gluten comes in, and instead of the body just not liking it, the immune system attacks the lining of the small intestine."

Beth tapped the page.

"The lining is where you absorb things.

Iron. B12. Calcium.

So, it isn't really a stomachache problem.

It's an absorption problem, and the stomach part is sometimes barely there at all."

"That's why they ran the iron."

"That's my guess.

I don't know that. But that's what I'd ask him."

Eleanor was quiet for a second.

"And it doesn't go away."

"No. It's lifelong.

But it's managed with food, not medication, and the lining can heal once the gluten is out."

"All right.

What's the second one?"

"Wheat allergy.

That's a true allergy — same category as peanuts or shellfish.

The immune system reacts to proteins in wheat, and it's fast.

Minutes, sometimes. Hives, swelling, trouble breathing in a bad case." Beth looked up.

"You've eaten bread your whole life, Mom.

That one's almost certainly not you.

I'm only telling you, so you know what it is when it comes up, because it comes up constantly."

"And the third."

"The third is the messy one."

Beth turned the page.

"Non-celiac gluten sensitivity.

People feel awful when they eat wheat — tired, bloated, foggy — but there's no intestinal damage and no antibodies.

Nothing shows up on a test. So, the only way anyone gets to it is by ruling out the other two first."

Eleanor frowned. "So how do they know it's real?"

"That's about where we gave up last night." Beth smiled a little.

"But there was one thing I found after, and it might be the most interesting part.

Some researchers think for a lot of those people it isn't the gluten at all.

It's a carbohydrate called fructans that happens to be in wheat too.

Same bread. Different culprit."

"Well, that's a fine mess."

"It is. And it's exactly why the answer to all of this is a test and not a diet."

Eleanor glanced at the counter, where the saltines still sat where Beth had put them down.

"I don't see how that changes what I'm doing. If it's one of the three, none of them want the crackers."

"That's what I thought too." Beth found the page she'd folded over.

"This is what I came to tell you.

The blood test for celiac only works if you're still eating gluten.

It looks for antibodies — what your body is making in response to it.

Take the gluten away, and the antibodies fade out."

Eleanor looked at her.

"So, if I clean out this kitchen today —"

"Thursday's test can't see anything.

It comes back negative, and nobody knows whether that's because you're fine or because you've been eating rice cakes for four days."

Beth closed the notebook.

"And then the only way to find out is to go back to eating bread for weeks on purpose and get tested again.

Feeling, however, that makes you feel."

Eleanor set the tea down. She looked at the open cupboard for a long moment, and at the corner she'd already started on.

"That is the most backwards thing I have ever heard."

"I know."

"I'm supposed to keep eating the thing that might be hurting me. So, they can catch it hurting me."

"Yes." Mother. Beth reached across and took her mother’s hands.

Don’t worry, we are going to get through this together.

Eleanor’s results were still days away. But she had a potluck to get through first.

(If your family’s next test is a game day spread rather than a potluck table, we covered that here: Gluten-Free Game Day.)

Where to Go Next

If you're where Eleanor is — waiting on labs or wondering whether to ask for them — these are the places worth your time.

Start here

Celiac Disease Foundation — celiac.org

Their screening and diagnosis pages explain the antibody blood test in plain language, including why you have to still be eating gluten when it’s drawn.

Beyond Celiac — beyondceliac.org

Symptom checklists and questions to bring to your appointment. Print one out and take it with you.

National Celiac Association — nationalceliac.org

One of the few organizations with a page written specifically about celiac disease developing later in life. Worth reading if you're over 60.

National Institute of Diabetes and Digestive and Kidney Diseases — niddk.nih.gov

The government's overview. No products, no opinions, no one selling you anything.

Books

Celiac Disease: A Hidden Epidemic — Dr. Peter H.R. Green and Rory Jones

The one most people call the standard. Green directs the celiac center at Columbia; Jones is a medical writer who has celiac disease herself. Start with the most recent edition.

Gluten Exposed: The Science Behind the Hype — Green and Jones

Same authors, different job. This one sorts the medical reality from the marketing, which is the question most people actually arrive with.

Gluten Freedom — Dr. Alessio Fasano

Written by one of the leading researchers in the field. Readable and good on how the disease works.

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