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Flightrisk

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Flightrisk Newbie

I'm not sure what really needs to be said as far as introductions go but I'll tell you my short story....I'm an endurance athlete who started having stomach/GI issues a few months back and was coincidentally getting ready for a routine physical for my racing. Stomach and GI issues are not uncommon for us because we place such a high demand on our bodies and deplete nutrients. During the physical all my blood work came back totally wacked. We did a retest two months later and I went on Prilosec. My iron was very low and my ferritin was dangerously low. I went on iron pills and stopped racing and training. Fast forward a couple more months I started pushing (my Dr who thought I was just not eating enough green leafy vegetables) and I got the scope and a call from two doctors saying I was very much a Celiac after taking a biopsy. The doctors said to stop eating gluten, check all my soaps and shampoo's and be careful of cross contamination. This was a few days ago and I have been referred to a dietitian. I'm still dizzy with the diagnosis but trying to be proactive and have started to adjust my diet to be gluten free. I


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mushroom Proficient

Hello, and welcome to the board.

With your endurance racing you would have been placing many more demands on your body for nutrients than your average celiac so you maybe were diagnosed a lot sooner than a lot of us-- well, many of us have never been diagnosed :P I can see that all this has probably thrown you into quite a tizzy, but it sounds like you are heading in the right direction. Most of the experienced celiacs on the board recommend that you avoid as much as possible at first the gluten free substitute foods. Some of these have starches our bodies are unfamiliar with and not used to digesting; in fact, some of them are hard to digest. Try to stick with the naturally gluten free foods as much as possible. To meat, fruit and veggies, you can add nuts and seeds, rice, and maybe some rice pasta. Most of us have trouble with any lactose-containing foods - milk, cream, ice cream. Some can handle other dairy such as yogurt and hard cheese, some cannot. You will have to trial this for yourself. Your dietitian will hopefully help you with this. Have you had your Vits. D, B12, folate, A, E and K checked? Also potassium, zinc and calcium? These are often depleted in celiacs along with the iron/ferritin, and also thyroid.

Good luck on your gluten free journey and feel free to ask any question you can't find an answer to. :)

Flightrisk Newbie

Hello, and welcome to the board.

With your endurance racing you would have been placing many more demands on your body for nutrients than your average celiac so you maybe were diagnosed a lot sooner than a lot of us-- well, many of us have never been diagnosed :P I can see that all this has probably thrown you into quite a tizzy, but it sounds like you are heading in the right direction. Most of the experienced celiacs on the board recommend that you avoid as much as possible at first the gluten free substitute foods. Some of these have starches our bodies are unfamiliar with and not used to digesting; in fact, some of them are hard to digest. Try to stick with the naturally gluten free foods as much as possible. To meat, fruit and veggies, you can add nuts and seeds, rice, and maybe some rice pasta. Most of us have trouble with any lactose-containing foods - milk, cream, ice cream. Some can handle other dairy such as yogurt and hard cheese, some cannot. You will have to trial this for yourself. Your dietitian will hopefully help you with this. Have you had your Vits. D, B12, folate, A, E and K checked? Also potassium, zinc and calcium? These are often depleted in celiacs along with the iron/ferritin, and also thyroid.

Good luck on your gluten free journey and feel free to ask any question you can't find an answer to. :)

No, I have not had my vits checked but will ask about it. My doctor did note a low iron back in 06 when I had another physical but it was not substantial enough to cause concern without other symptoms. So basically this diagnosis might not have been as quick as we think, they said I had pretty good damage to my SI, so it had been there for a while. It is a roller coaster I didn't want to ride but it is what it is and I will continue living my life to the fullest. I don't like having conditions or issues, I just want to be average, problem free :-)

Thanks for the pointers.

Judy3 Contributor

Welcome Carl,

My trail here is rather new as well, I've been on the gluten free for a month now. Firm diagnosis here too. I'm not finding the diet difficult to follow but I was a whole foods, all natural, mostly organic food person before. Bread is my big Ackkk with gluten free products. I've decided that rather than spend all this money on different breads that I hate, I'm just giving it up. I get enough carbs from fruit, beans (legumes), and some rice and potatoes so I'm not going to fret about bread. Haven't found one yet that will pass my 'texture in foods' issue... lol But other than that, brown rice pasta isn't too bad. So onward we go into the abyss called gluten free dining. It seems like an abyss because the stuff seems to be everywhere.. who knew?

Welcome to the next chapter of your life... Good luck on your journey. :)

My friends scheduled a girl's night out for after the holidays in January and they planned it for the Olive Garden... hmmmm seems like I won't be attending maybe...Olive Garden really? I heard they have a gluten free menu (small but it exists) That is the part that makes me nuts... Eating away from home!

Kay DH Apprentice

As you exclude gluten from your diet, you may become more sensitive to it (cc from foods that are supposed to be gluten-free, eating out...). Even foods that are labeled gluten-free but have been processed in a plant that also processes wheat... can be problematic. You may also find that dairy causes problems for you until your GI tract heals. That you are a triathlete while your body was fighting you is impressive. Once your gut heals you will probably be an even stronger athlete. My biking and stamina increased once I went gluten-free. I don't know if you cook, but gluten-free food is actually quite good. I avoid most prepared foods unless they are certified gluten-free, otherwise the gluten-free flours can have cc possibilities. There is also a grieving process with gluten-free; food is more than just food. Going gluten-free like a game in that there are obstacles, but the finish is great. :)

Judy3 Contributor

As you exclude gluten from your diet, you may become more sensitive to it (cc from foods that are supposed to be gluten-free, eating out...). Even foods that are labeled gluten-free but have been processed in a plant that also processes wheat... can be problematic. You may also find that dairy causes problems for you until your GI tract heals. That you are a triathlete while your body was fighting you is impressive. Once your gut heals you will probably be an even stronger athlete. My biking and stamina increased once I went gluten-free. I don't know if you cook, but gluten-free food is actually quite good. I avoid most prepared foods unless they are certified gluten-free, otherwise the gluten-free flours can have cc possibilities. There is also a grieving process with gluten-free; food is more than just food. Going gluten-free like a game in that there are obstacles, but the finish is great. :)

You know I just made a comment about the grieving process this week. I feel like I'm in the anger phase this week, everything is ticking me off, can't sleep, trying to wake up from this nightmare and live normally again. Hmmm not gonna happen is it? At least I'm not sick anymore, that's a blessing but seriously this gluten free eating is a challenge. Sometimes I forget and go to reach for something and then pull my hand back like it's poison . So I believe there is a grieving process for this.. wow

ravenwoodglass Mentor

Hi Carl, Welcome to the board. You'll find lots of info and support here. Read as much as you can and ask any questions you need to. You have a great doctor to have caught this and give you the advice about toiletries that he did. So many doctors are so clueless that many of us had a very long road to diagnosis. I hope you are feeling better soon and running toward a long and healthy gluten free life.


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Kay DH Apprentice

You know I just made a comment about the grieving process this week. I feel like I'm in the anger phase this week, everything is ticking me off, can't sleep, trying to wake up from this nightmare and live normally again. Hmmm not gonna happen is it? At least I'm not sick anymore, that's a blessing but seriously this gluten free eating is a challenge. Sometimes I forget and go to reach for something and then pull my hand back like it's poison . So I believe there is a grieving process for this.. wow

That there is. I've been gluten-free for about a year now and most things are automatic, but I still get frustrated. It is irksome having to be on guard at restaurants and any time I have to eat out (as opposed to wanting to eat out before). I really wish my friends would not cook for me, but some still want to (no, you can't use the spoon you stirred the wheat noodles with). Mentally switching from "warm crusty loaf of wheat bread" to "poison" takes some effort. So, it is important to focus on the positives such a health, and that sorghum and other gluten-free flours are fun to cook with.

Flightrisk Newbie

Thanks everyone for the warm welcome to your community. :D

I have already found the information on this site to be very helpful. I think some of this will be somewhat easier for me to adjust to than others, as I have regularly adjusted my diet for races and training schedules. I typically only ate out at a fast-food joint once a month and only ate out at restaurants a few times a month, so those adjustments won't be hard. I was never known to snack much, either. I have always seen food as fuel not an emotional or pleasurable experience, I eat out of necessity. I have played with my diet while training, things like removing dairy, eggs, all meats going vegetarian and then to vegan and back again to find out what gave me more strength and recovery. Funny though through all of that I was poisoning myself and was not even aware of it! I did find the hardest part being the several trips to the specialty store. I will try to adjust this and shop filling up a cart versus only trying this or that, this is permanent not something I'm just trying. Educating my other half will be a bit of a challenge (although she is super supportive) and as I was using the butter I noticed bread crumbs in the tub and mentioned it to her, she was surprised and didn't think she did that, (it was cute).

So I'm trying the best I can to avoid gluten and have noticed little differences. I have switched to red wine and been eating a lot more meats. I have started to notice many foods in my market place saying gluten free and thank the sky's above that I live in a large city which is somewhat healthy. I feel for the person who lives in a small town far from a large metropolitan area with the conveniences I have. I have not noticed anything while training but, am hopeful I will see some positive results in the near future.

Thanks again, Carl~

MelindaLee Contributor

Welcome Carl,

My trail here is rather new as well, I've been on the gluten free for a month now. Firm diagnosis here too. I'm not finding the diet difficult to follow but I was a whole foods, all natural, mostly organic food person before. Bread is my big Ackkk with gluten free products. I've decided that rather than spend all this money on different breads that I hate, I'm just giving it up. I get enough carbs from fruit, beans (legumes), and some rice and potatoes so I'm not going to fret about bread. Haven't found one yet that will pass my 'texture in foods' issue... lol But other than that, brown rice pasta isn't too bad. So onward we go into the abyss called gluten free dining. It seems like an abyss because the stuff seems to be everywhere.. who knew?

Welcome to the next chapter of your life... Good luck on your journey. :)

My friends scheduled a girl's night out for after the holidays in January and they planned it for the Olive Garden... hmmmm seems like I won't be attending maybe...Olive Garden really? I heard they have a gluten free menu (small but it exists) That is the part that makes me nuts... Eating away from home!

If you want to venture into store bought breads, my suggestion would be Udi's. Though it's not what we have grown up believing bread to be, it does fill that desire for a piece of toast or sandwich. We all end up with those cravings once in a while. I LOVE their bagels. My DD likes them better than regular, and their muffins are great, too. (I'm not a big fan of the lemon one, but blueberry and chocolate are great)

There are lots of places to find great recipes on this site, too. I have always been a big baker, so I have gone down that road. My co-workers love my experiments. They rarely complain about any of my gluten-free foods. Most of the time they don't realize until they see me take a bite ('cause if I'm eating it, you know it's gluten-free!)

I have only been diagnosed since August. It does get easier. I still sometimes get frustrated at being limited in where I go and eat. I find myself "forgetting" that I might have to make arrangements at a friend's wedding, or for lunch with my daughter at school, but I think that is a good sign. It means this disease doesn't rule my life.

Find some kind of snack bar you love for those times you needs something on the go. I love Kind bars. Other's talk of Lara bars being good.

K...that's my 2 cents. WELCOME. The world is getting to be a kinder place for those of us with food issues. There are many more restaurants and food companies who are looking out for us. I think gluten-free will be what sugar free used to be! :D

GFMochi Newbie

Welcome Carl!

I am new also to this forum. I too found out that I have celiacs while playing basketball for college. Have you tried running now off gluten? for me, with in a week or so, I started to feel more like my old self. It only continues to get better! But, being a serious athlete, you have to be really careful with contamination. REALLY CHECK YOUR POWERBARS and sport drinks!!!!! If you cooked a lot of noodles for a massive carb overload, get new pots and pans, because the gluten can be cooked into the pan. This includes cooking spoons, etc.

  • 2 weeks later...
rosetapper23 Explorer

Carl,

Regarding the crumbs in the butter, you're going to need to have dedicated butter, mayo, peanut butter, jams, etc., just for YOUR use. Contamination can be a huge problem otherwise (and the cause of hurt feelings). You should also have your own toaster because your other half's toaster will have wheat crumbs in it.

Do you have a BJ's Brewhouse in your large city? If so, they serve GREAT gluten-free pizza and Redbridge beer, which is also gluten free.

Also, with regard to your ferritin level, it can take 6-12 months to bring the level up. However, if you've been taking iron pills and your ferritin level isn't improving, it could be that you're simply not absorbing iron at the moment. You might try taking a gluten-free iron supplement in liquid form to see if you absorb it better. If that doesn't work, you can ask your doctor for intravenous iron. My doctor had been unaware of this possibility, so I was ill for many years after my celiac diagnosis because I continued to have a very low ferritin level due to malabsorption. It's very important to keep your iron levels up because low iron means low oxygenation of the cells, and this can create an environment for the growth of cancers (I know this from personal experience).

Good luck to you in exploring your new gluten-free world...

  • 2 weeks later...
NarniaHope Newbie

Hey Carl,

I am also a triathlete, and got so sick from what we now figure was Celiac that I spent three years too sick to even go for a walk, much less race. This summer marked my year mark of being gluten free, and I am back to nearly-normal training. I started back to triathlons in August and even won my age division at my latest race. It's a long road, but I'm on my way back to healthy, and looking forward to a marathon in April and hopefully and Ironman in 2012. All that to say - keep the dream alive! It's tough to face the new limitations, but breaking through limitations is something we endurance athletes do best!

(PS - for training and racing, I would recommend GU or Hammer products, Gatorade, and Trio bars. All gluten-free and pretty decent tasting. Good luck!)

~Karen

Wenmin Enthusiast

Welcome Carl,

My trail here is rather new as well, I've been on the gluten free for a month now. Firm diagnosis here too. I'm not finding the diet difficult to follow but I was a whole foods, all natural, mostly organic food person before. Bread is my big Ackkk with gluten free products. I've decided that rather than spend all this money on different breads that I hate, I'm just giving it up. I get enough carbs from fruit, beans (legumes), and some rice and potatoes so I'm not going to fret about bread. Haven't found one yet that will pass my 'texture in foods' issue... lol But other than that, brown rice pasta isn't too bad. So onward we go into the abyss called gluten free dining. It seems like an abyss because the stuff seems to be everywhere.. who knew?

Welcome to the next chapter of your life... Good luck on your journey. :)

My friends scheduled a girl's night out for after the holidays in January and they planned it for the Olive Garden... hmmmm seems like I won't be attending maybe...Olive Garden really? I heard they have a gluten free menu (small but it exists) That is the part that makes me nuts... Eating away from home!

I eat Olive Garden often enough. I have the salad without the crutons, then I order the Mixed Grill which is skewered chicken and steak served over roasted potatoes, squash and Zuchinni. Very good meal and I don't even ask for the gluten free menu! (The hardest part is not eating the bread!)

Wenmin

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