Is It Possible To Tolerate Rye And Still Have Celiac?

[bevy13]

Hi,

I'm new here but have been lurking for years and have been very grateful for the information in avoiding wheat-gluten. Still pursuing dx. 4 years ago I discovered wheat was causing rashes, headaches, constant heartburn, itchy blisters on my feet, sinus issues, urinary incontinence, tiny bowel issues, glossitis, dermagraphism. I'm also the shortest in my family, had apthous ulcers, chelitis, constipation as a kid. And have been dxd with IBS a number of times. I got the gene test and have 2 copies of the dq2 gene. But my blood tests are negative, after being off gluten though and low IgA (but not deficient), biopsy normal (4 taken in duodenum) after reintroducing gluten for 6 weeks. Whenever I eat wheat accidentally I can tell immediately via tongue, headache, heartburn. But I can eat rye crackers without these issues, I don't eat them all the time just occasionally. Could this mean I don't have celiac? Thank you! Can anyone here with celiac tolerate rye?

[MaryJones2]

Hi bevy13,

Celiacs can't tolerate any of the gluten grains. A lot of us seem to have different reactions to the different gluten grains but it's still a reaction. Do you have issues with barley or oats? You could have a wheat allergy or intolerance which would explain the negative tests. Have you had any allergy testing?

Janet

[bevy13]

Thanks Janet. Yes I've had allergy testing and test negative. I do seem to react to barley or malt.

Hi bevy13,

Celiacs can't tolerate any of the gluten grains. A lot of us seem to have different reactions to the different gluten grains but it's still a reaction. Do you have issues with barley or oats? You could have a wheat allergy or intolerance which would explain the negative tests. Have you had any allergy testing?

Janet

[Tallforagirl]

...Can anyone here with celiac tolerate rye?

Yep, I can. I can also tolerate wheat, barley and oats. But I'm a blood test and "gold standard" biopsy proven Celiac.

Symptoms are not always an indicator of what is occuring on the inside.

You've had the tests and they were negative. There's still a chance you have celiac disease. I guess you have to decide whether you believe you have it, and if you do believe you have it, whether it's worth taking a risk with your health for a couple of rye crackers every now and then.

One thing you could do is ask for a second opinion on the biopsy results. It's possible they were misinterpreted.

[bevy13]

Thanks for the response. I kinda thought eating the rye crackers might prove/disprove if my problem is wheat or gluten. Of course today after eating some I got, headache, sinus issue, later heartburn... The main reason I want to pin this down is cause of my kids have issues that COULD be caused by gluten, but not the classic symptoms. Then there's my sister's family with grandkids who can't eat wheat.

I have sent my slides to the Celiac Center at U of Chi. So I'm hoping... for resolution.

Yep, I can. I can also tolerate wheat, barley and oats. But I'm a blood test and "gold standard" biopsy proven Celiac.

Symptoms are not always an indicator of what is occuring on the inside.

You've had the tests and they were negative. There's still a chance you have celiac disease. I guess you have to decide whether you believe you have it, and if you do believe you have it, whether it's worth taking a risk with your health for a couple of rye crackers every now and then.

One thing you could do is ask for a second opinion on the biopsy results. It's possible they were misinterpreted.