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Dealing With The Extras Of Celiacs, The Things No One Talks About.


Marley25

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Marley25 Rookie

I am looking for some more information

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ravenwoodglass Mentor

It can take a while to heal after diagnosis. Do make sure your doctor checks your vitamin and mineral levels. Many of us also suffer from additional intolerances the most common being soy and dairy. If you haven't already you may want to drop those from your diet and then adding them back in, one at a time, after you are feeling better. If you take supplements do be sure to get ones that are gluten free and do read all ingredients to make sure there is no wheat or barley grass in them. Do check all script and over the counter drugs you take also.

Make sure you are taking precautions against CC both in the home and out. Many of us also avoid topicals with gluten ingredients such as shampoos, conditioners and lotions.

You may need to work up to the level you were at before with your excercise. Do what you can and don't be too hard on yourself if it takes a while to get to the point where you were before. You will get there eventually.

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dilettantesteph Collaborator

It sounds to me like you may need to take additional precautions with your diet. You may be a super sensitive celiac. I found that to be the case for me when I started training for a mini triathlon. When you exercise hard you notice glutenings a lot more. My daughter is in the same boat as a distance runner. The bloated belly is the thing that she notices most, as well as feeling like crap.

You need to keep careful track of what you eat each day and how you feel. Try to wash things more carefully. You may want to avoid farmed fish since they are fed gluten grains and so are swimming around in the stuff. What you can do to see if a particular item is bothering you is to not eat it for a few days and then eat a relatively large amount and watch that belly. I have found that I react to mushrooms with this method, and I think that it is because they are grown on straw. I have had problems with some other produce too, maybe from sprays or coatings, or from other farming practices. I was just reading about mixing a pesticide with wheat germ to treat cabbage worms.

I hope that you can get back to running, and best wishes with your professional career.

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tictax707 Apprentice

I realize the anti grain people are going to yell at me for this, but I'm sticking to my guns: it sounds like you need starches in your diet. Rice, potatoes, corn, gluten free bread... something. Those starches are still really important for athletes.

One thought on the bloated belly - it might be the raw veggies that are still going it. Raw veggies are harder to digest than cooked ones. You can still steam them and not loose nutrients. Some may be easier for you than others. And it might be the kinds of fruits you are eating as well. One thing I noticed with fruit is that sometimes when I eat it plain it gives me problems but if I put it in something like yogurt I have no problems. Ultimately you'll still have to play with it and really pay attention to your diet and how you feel later, like dilettantesteph suggested.

Hope you can get things sorted out to minimize the reactions!!

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domesticactivist Collaborator

I'm one of those grain-free people but agree with tictax707 in that I think that the raw foods might be causing the bloating and probiotic foods may help. In the diet we are on (GAPS - you can find more about our experience with it by going to the blog linked from my profile and searching for GAPS Resources), you start off with only the most easily digested and nutrient dense foods and then slowly add in others. The diet starts with bone broths and thoroughly cooked veggies, then adds in meats and naturally probiotic foods (like homemade sauerkraut, yogurt, and water kefir). You also eat a lot of saturated fats. (Natural, organic, pastured... not scary processed or CAFO ones) Eventually you get veggies back, but polysaccharide sugars and starchy foods stay out.

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Marley25 Rookie

Thanks every one for the help! It makes me feel a lot better knowing that I am not alone on this!

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cahill Collaborator

I am looking for some more information…

1. I am a runner, however since being diagnosed I have a hard time running the distance that I used to. Even after months of re-training I still just don’t have the energy to go the distance.

Our bodys use carbs and/or fats for energy .

as a runner you need energy. When you ate more grains you got your energy from carbs. Now that you are eating lower carbs you need to get your energy from fats. Try adding good fats to your diet .

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Skylark Collaborator

3. I am fresh out of college, I am just started my professional career. When I have a slip up and have contact with gluten, I am sick as a dog for a few days. What is the best way to deal with this?

It means you cannot afford to take risks with food when you need to be well. Don't eat out and only eat foods you have prepared yourself and know are safe. If a friend or coworker offers you food that could have gluten or CC you'll have to turn them down.

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cyberprof Enthusiast

It means you cannot afford to take risks with food when you need to be well. Don't eat out and only eat foods you have prepared yourself and know are safe. If a friend or coworker offers you food that could have gluten or CC you'll have to turn them down.

This is good advice. I don't take chances often and never before an important meeting, business trip or event.

However, if you do get sick and have to miss a lot of work, as a new employee you'll have to be very careful about missing time and being seen as a "problem" employee. Celiac is covered (assuming you're in the U.S.) under the Americans with Disabilities Act. The ADA gives employees protection against being fired for diseases that interfere with "normal daily functioning" as celiac does. What the ADA will do is keep you from being fired. You do need a doctor's note and you have to jump through some hoops but it would be worth it. First thing to do would be to read the employee handbook. If you are in a small company, you may need to talk to top owners/managers but it might not be covered under FMLA. In a larger company, human resources are the folks to talk to.

I haven't done this (I can work from home and regularly work more than 40 hours a week, so I don't get in trouble the few times a quarter that I am sick.) but one of the women that works for me has done it for Rheumatoid Arthritis, which causes her to miss extra days and come in late about once a week.

Some companies (hopefully not many) might penalize someone for using the provisions of ADA but it's against the law to do so.

I hope you don't need to do this but just FYI in case you do.

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Neshema1 Newbie

I don't think ADA covers ppl on long term disability leave (after using up FMLA), right, even for tenured profs. I think they can fire u for being sick indefinitely. As sky knows, I had dx of celiac since age 13 mos, then docs took me off diet thinking I didn't have it, always had malabsorption, RA, & now neuro & heart problems. I'm pretty young for all this. Now I'm back to celiac & gluten free. But I missed 2years of work after a stellar career & am not sure what they can do, but I'm not their golden girl since I got sick. I sure was a big deal before. Pretty sad.

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Korwyn Explorer

I'm also one of those 'anti-grain' people, but I also know that the best food lifestyle is the one that your particular body needs - excluding processed foods and additives and preservatives, etc. :)

Our youngest son trains and fights amateur MMA, and he cannot get by without some starches and carbs. However he is quite wise in when and what he eats. He has learned he needs to to eat frequent smaller meals (about 6 a day), balancing his protein/fat/carb in a roughly 30%/35%/35% (by caloric breakdown) ratio. Anything less than that and he runs a severe energy deficit. He limits his starches and carbs to fresh veggies and some fruits (usually berries), sweet potatoes or occasionally red potatoes (with skin) , quinoa, jasmine or basmati rice. His meat is pretty much anything. Game, fish, poultry, beef, pork, lamb, etc. He also eats no processed or refined sugars, using maple syrup or raw honey for sweeteners. His one weakness is Ezekiel bread.

I don't train as hard as he does, though I do sometimes get an additional amount of physically intense outdoor work. But even when I'm training and working outside (shoveling gravel and moving railroad ties the last few days putting in a woodshed) my diet has to consist of 55%/60%/<2% protein/fat/carbs (by caloric count). If I eat many more carbs than that I start to get sick. D, stomach upset, weight gain, etc. Usually I try and have no more than 50 grams of carbs a week, and only eat whole/raw foods.

So the biggest thing I would suggest is that you need to find the balance your body needs, but always be experimenting and remember that it will change over time as you change. Just because you ate that way last year doesn't mean that is what your body might want now, and a year from now you might need to alter again.

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cyberprof Enthusiast

I don't think ADA covers ppl on long term disability leave (after using up FMLA), right, even for tenured profs. I think they can fire u for being sick indefinitely. As sky knows, I had dx of celiac since age 13 mos, then docs took me off diet thinking I didn't have it, always had malabsorption, RA, & now neuro & heart problems. I'm pretty young for all this. Now I'm back to celiac & gluten free. But I missed 2years of work after a stellar career & am not sure what they can do, but I'm not their golden girl since I got sick. I sure was a big deal before. Pretty sad.

NEshema, I am a business executive not a tenured prof (I teach part-time in addition). And I wasn't talking about long-term disability, only missing a few days here and there (in a non-tenured job) as the original poster asked. So you've misunderstood her question and my reply.

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krystynycole Contributor

6 months may not be enough! Hang in there and keep sticking to your diet and after awhile you will feel better. Also, I keep a gluten enzyme in my purse for those cc days.. Though it doesn't make me feel great or a "cure" it seems to help break down the gluten and have it move through my body a little quicker.

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cap6 Enthusiast

My dr took me off of all raw veggies till my gut heals more. Cooked is much kinder to the gut.

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cyberprof Enthusiast

My dr took me off of all raw veggies till my gut heals more. Cooked is much kinder to the gut.

I did this too, on my own. I found I had to have cooked fruit and veggies for a few months.

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sreese68 Enthusiast

Fructose malabsorption can cause fatigue and bloating. A lot of fruits have a high level of fructose in them. Onions and garlic can be a problem, too. You may want to keep a food and symptom log to see if there's a pattern anywhere. And remember that it can take a few days for a reaction to show up.

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lovegrov Collaborator

I think it's WAAAY too early for anybody to scare you with the "super sensitive" tag. Other suggestions on here sound much more likely.

richard

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kareng Grand Master

I think it's WAAAY too early for anybody to scare you with the "super sensitive" tag. Other suggestions on here sound much more likely.

richard

I agree with this. You have only been trying to be gluten-free for 6 months. Apparently, you have had gluten a few times as you are learning what & where to eat & not eat. So.. You really aren't gluten-free for the full 6 months.

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cyberprof Enthusiast

I think it's WAAAY too early for anybody to scare you with the "super sensitive" tag. Other suggestions on here sound much more likely.

richard

Yes, I agree with Richard and Karen. Hang in there and it'll get easier.

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