When To Retest & Horseback Riding

[Cam's Mom]

Hi!

I have posted previously with my great frustration about my daughter's tTg remaining high 7 months after diagnosis. Thanks so much for all of the helpful advice!! We've now gotten rid of all of the chapstick with vit. E and even switched the dog and cat food to gluten free, made the house completely gluten free and have moved her off of the lunch table at school. Camryn is not showing any signs of discomfort, is growing like crazy and seems pretty much fine. However, she is still very constipated. Could this just be constipation? She is a vegetarian and eats lots of beans, I put flax meal in everything I bake for her, she has salad every day and celery every day - this kid lives on fiber, so it seems wrong to be constipated.

Anyway, I feel like we need another check (I think psychologically it is me that needs to see that good number) but how long should we wait? Should we wait until she is more "regular". Last time she had blood work she had a major panic attack so I don't want to put her through it if we suspect it could still be high.

And one other question: Her passion is horseback riding - recently a friend asked me - do you really think it is a good idea for her to be riding an animal that roles around it gluten all day? While I am pretty sure horses don't really spend a lot of time rolling in their food, they do indeed eat all the stuff that a celiac should stay far away from. Camryn does not feed them but she does groom and ride - any other equestrians out there with an opinion on this. I think she would die if I told her she could't ride. Maybe gloves and a mask - tell me I'm just being extreme, please!!

Thanks!

Barb

[Lisa]

Barb:

Mntdog here on this site would be a wonderful person to talk to. She also has a passion for riding and we have talked about this at great length.

I have had horses for manyyears but that was before me being dx's with celiac. I would expect that there would be a high level for CC, with oats, barley, dander from the fields where they poop and roll. When you daughter is grooming there is a high probability that she is grooming dried (horse apples) that contain oats, rye, barley and wheat.

She may breathing the dust and dander into her noise and getting into her mucous and ingesting by swallowing. Also, she may be putting her hands near her mouth at any time during riding. The dust from the ring also could be inhaled and swallowed.

If you love horses, it is a passion. Try this...If she is willing to wear a surgical mask while grooming and riding that might help and also gloves while grooming.

I know what it would be like to leave a passion, but try some alternatives and see if they help. Horses and daughters....there is no better a connection. I do hope that you can work it out.

Hope this helps.

Lisa

[Mtndog]

I LOVE TO RIDE TOO! I was gluten-free for about a year but still pretty symptomatic when I tried to go back. I leased a horse for a month and wore gloves and an N95 mask (I think that's what it's called- you can get them in a hardware store and I don't think avain bird flu can even pass through these things!) when I groomed. I did no feeding and I wore gloves when I rode but not a mask.

It's hard to say- I did get sick but there were other possibilities (i had other intolerances I wasn't aware of). I felt so goofy wearing the mask but when I explained to people why I was wearing it, they were impressed that I loved horses that much that I was willing to do it.

I would say, since she's feeling better have her go once a week and see how it goes.

As far as the constipation goes, if she's feeling OK I wouldn't worry about it! 2 years into the diet (oh my gosh- yesterday was my 2 year anniversary!), I still have it no matter what I do so my GI put me on Miralax which works great.

I have to say, knowing how much I love horses and riding, that I would give it a shot. You can ALWAYS PM me or email me through the board.

Hmmmm...maybe I need to go riding again. I remember reading about a woman with celiac who owned a horse and his diet was corn feed based so even her horse was gluten free. PLEASE let me know how it goes!

[Sophiekins]

The standard is to do blood work at 6 months, 12 months and 24 months following diagnosis - with more frequent tests at your physicians discretion if dietary difficulties are encountered. If your daughter panics at these (I do too. . .) you might consider talking to your doctor about getting a pediatric specialist to draw your daughter's blood (your local children's hospital or children's ward should have one on staff).

Regarding Camryn's constipation. . .I might venture to suggest there's too much fiber in your daughter's diet. Personally, too little fibre means soft stools, too much fiber means constipation. Perhaps ease up on the celery for a bit, see if it makes a difference?

On the subject of horses, I've not ridden since my diagnosis (I live in a big city now and at $100+ an hour, it's a bit expensive!) but I would say that my only area of concern would be feeding (as horses have a much more efficient digestive system than we do and the grain proteins should not be excreted). Make sure she wears long sleeves and trousers at the stables, as well as gloves when she's around the horses (and make it very clear that she needs to not touch her face until she's washed up). If she grooms them, talk to your stable about having her groom in an area away from feed bins (ie, outside stalls). If you are very concerned, you could look into finding a stable with a grass ring (rare and expensive) but my instinct would be that she is okay. My grandfather is not celiac, but is seriously allergic to wheat - so much so that he left the farm because harvest was toxic and ends up in hospital if he eats it - but he's fine around horses as long as he doesn't handle their feed. And, of course, keep her horse clothes separate from the rest of her stuff, and talk to your stable about the possibility of her showering after her ride/chores.

Of course, if you're brave enough, you could also keep her away from horses for five weeks (and be extra-vigilant about her diet) and have her blood work re-run as a baseline, and then let her ride for five weeks (still being extra-vigilant about her diet) and have blood work run again. . .if her numbers spike, you know why.

[kbtoyssni]

The amount of fiber sticks out to me, too. If you eat too much, it still makes things stick together, but if there isn't enough other matter then everything turns into, well, the big C. You have to have something softish in there in addition to the fiber.

[georgie]

OMG I have horses and feed them and never even thought of this. Would corn hay & dust do that ? I am not riding them at the moment but handle them every day. I was only ever dx as Gluten Intolerant and have never had D - its more of a brain fog thing with me - and stomach pain now - when I ge accidentally Glutened. Hmm... I reacted to makeup recently .... horses too ?

[vampella]

I never though about horses, my uncle owns a farm and we go out all the time and feed, ride and clean stalls. gloves and mask it is I guess.

[Mtndog]

On the subject of horses, I've not ridden since my diagnosis (I live in a big city now and at $100+ an hour, it's a bit expensive!) but I would say that my only area of concern would be feeding (as horses have a much more efficient digestive system than we do and the grain proteins should not be excreted).

This is a GREAT piece of info to know!