Celiac!

[mackieb]

Hi everyone!

I’m currently in the process of being diagnosed with celiac- my scope is hopefully in the next few weeks but my tTg is >250 (over 15x the normal amount) and the symptoms all fit the description. I have no idea how sensitive I’ll be yet, and how that will affect my barn experience. For example, I’ve heard of some people being glutened while taking all the precautions including gloves, long sleeves and face mask, and others needing no precautions at all- I think the only concern at my barn would be the grain, which has wheat middlings and/or wheat flour, we use shavings for bedding and grass-grown hay. I’m also wondering if I’ll ever be able to attend one of my favorite nearby show venues again since they use straw bedding and I’m thinking depending on how it’s processed, the airborne gluten could become dangerous as my body adjusts to being gluten free (not to mention if your horse decides to lay down in it and you’re in close contact with them including grooming, tacking, and your exposed face being inches away from their neck while two pointing over jumps and possibly breathing in any leftover dust stuck between their braids). Can you tell I’ve been overthinking and freaking out a bit?😅

Anyways, if anyone here with celiac (or who knows someone with celiac) could give me their stories of how their barn experience interacts with the disease, I would be so appreciative!

[Fillabeana]

Ok, so first off, with a really high tTg antibody level you probably do have Celiac. I’m not a doctor, and I’m giving you my thoughts and experiences, not medical advice.

I would not go into a barn bedded with wheat straw unless I had a very good respirator mask.

Hay made from gluten grain plants (triticale or barley hay being the more common) should be a lot less troublesome. The hay is usually cut before the plant makes it’s seeds- the seeds being the gluten grains.

I would not brush a horse that has been bedded on wheat straw without a very good respirator mask.

I would not feed supplements or grain that contained wheat/barley/rye/triticale grain or grain byproducts.

This is based on my own experiences, having a bad gluten reaction, to several instances of inhaling dust from wheat straw, barley grain, etc.

Fortunately, wood shavings are readily available for bedding.
We
”‹”‹”‹used to use a lot of wheat straw in the winter, for our cattle. Like, a semi truck load or two. We just flat could not figure out how we could use the wheat straw without creating a situation where either my husband or myself would get an inhaled gluten reaction from it.
Once, we put a 900 lb big bale out in the heifers pen with the tractor, wearing a respirator to remove the baling twine. So far, so good…the heifers turned it into their bed without us… and two weeks later, we weighed the heifers and took ultrasound carcass measurements. For which they needed about a square foot of hair on each of their backs clipped. We both had a gluten reaction from clipping the hair…it was inside a barn, 100 heifers.

Now we buy oat straw.
”‹”‹”‹”‹”‹”‹

But anyway, the inhaled gluten is a real bugger for me, and my husband as well.

[mackieb]

Fillabeana, this is so wildly descriptive and helpful- thank you!!

[Fillabeana]

Mackieb, I am willing to share more… but by pm or phone call, I don’t want to share a lot of details on the internet.

And you will probably be able to show at your favorite venue. It will just take some pre planning, and perhaps accommodation by show management to bed your horse in shavings. The Americans with Disabilities Act does apply to Celiac disease.

[EverElite]

Huh. I have celiac and feed TC senior, which has wheat middlings, and never had any problem with inhaled gluten. To be honest, I never thought about it.

[Fillabeana]

Isn’t the TC Senior a fairly moist formulation? If so, you wouldn’t have dust to inhale.

[KarenRO]

I had never heard of an inhalation pathway for celiac. It appears inhaled gluten could possibly cause celiac symptoms but it has to make its way to the small intestine. I found this Q/A on the National Celiac Association website.

https://nationalceliac.org/blog/airborne-gluten/

[Fillabeana]

OK, so I’ve been looking for the references that clued me in that inhaled gluten dust could be a problem.

The first is a journal article from two case studies in the UK, where two farmers were feeding cattle a grain mix (barley, corn, wheat, soybean) indoors. The two were classified as “unresponsive Celiac” (otherwise known as Refractive Celiac) because they were very careful about eating gluten free, but still had intestinal damage and Celiac antibodies, and celiac symptoms.
Once the inhaled gluten dust was identified, they used a dust mask to feed; one person got to normal antibody levels and normal intestinal biopsy, the other had reduced antibodies/intestinal damage, and both had “resolution of symptoms”.

The journal article is behind a paywall at the New England Journal Of Medicine, titled Nonresponsive Celiac Disease Due To Inhaled Gluten, 356 (24):2548-9 July 2007 Sazzli Kasim M.R.C.P.I. Kieran Moriarty M.D and Richard Liston F.R.C.P.

I got it from this website, where one of the authors (Sazzli Kasim) uploaded it:
https://www.researchgate.net/publica…Inhaled_Gluten

The other reference, which I can’t find right now, is about a girl from Kansas diagnosed with Celiac disease that couldn’t seem to get healed, her diet got stricter and the parents made the entire house gluten free, still didn’t help. Turned out they lived near a grain elevator, which put wheat dust in the air near the house. They moved to Colorado and the kid got better. I’ll post a link if I ever find it.

[mackieb]

Thank you so much everyone, this is all super helpful!!

[islgrl]

I have celiac. Can’t speak to the straw.hay issue as we bed on shavings and feed timothy. But, everyone feeds grain and I do not have a problem with it. Frankly the biggest problem for me at horse shows is making sure to plan ahead and pack enough food because I can’t buy food on the show grounds.

[Squirt]

My friend/share boarder has confirmed celiac and is gluten free and vegan. She does not seem to have an issue feeding for me or moving the straw bales that were jump fillers for us. Now going on a trip? She has to bring ALL of her own food and preps it in the hotel. And I guess she has to be careful with her lip balms.