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Scary 1/2 Marathon At Disneyland Today


River Faerie

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River Faerie Apprentice

Hi Friends,

Ok, just got home from Disneyland, and wanted to relay my story only because it might help someone else out, and because I would love some direct feedback. First of all my gluten free days began on 8-1-08. Since that day, my training for the 1/2 marathon came to an abrupt halt as I was scrambling around trying to make sense of it all; angry, frustrated, and having wierd body ups and downs. I am 36 with three kiddos ages 4, 2 1/2, and 1. I teach middle school full time and can barely catch a breath for myself.

So, having given up my training/running, I was not really ready to be running 13.1 miles, but I was going to do it anyway. Stubborn! (Probably mistake number 1.)

The night before I had a small steak, a few grilled shrimp, small green salad and a potato. Delicious! I got up at 4, ate a Bora Bora bar, 1/2 cup of coffee (give me a break it was 4 am!) and a banana along with some water. (Probably not enough food, so that was mistake number 2. )

The hubby and I arrived at the site around 5:30, stretched and waited until 6:10 which was our start time. The first four miles were glorious, although I was starting to feel a lag in energy right after that. I grabbed a Powerade (I had no idea it would affect me the way it did. I am now guessing that is a big no-no! Mistake number 3.) My tummy started getting topsy turvey right before a steep incline. At that point, I began to alternate walking and running. I felt the color drain from my face and I was sweating a ton. Fast forward about another mile. I figured that maybe if I ate something that would help get me through. I stopped in a 7-11 thinking I could find a Tiger's milk. No luck. I grabbed a package of peanut M & M's, figuring they would be safe. (mistake # 4?) I ate a couple and kept going, mostly walking miles 6, 7, and 8. I found a few of my friends, and tried to pace along with them until mile 10. I went back to walking because my body was literally shutting down. My mind felt fine, but my body felt like it was wading in quicksand. Not good. I grabbed a "gu" like product made by Clif. (BIG mistake #5. )Immediately my insides started their twistiness again, and I felt like I was going to now barely be able to make it to a porta potty. Somehow, I kept going. (Mistake #6, probably) So I walked, and walked, and walked until I got to the last 1/2 mile or so. At that point, I jogged, because there was no way I was going to walk across that finish line.

When I stopped running, I felt like my legs were going to buckle, I was barely able to catch my breath, and I felt completely light headed with polka dots starting to appear. I found the hubby who had gone ahead with my urging (mistake # 7) and he finished before me. I told him that I was feeling wierd, and we went to get some fruit and to try to find a shady spot. I sat down but I was almost shaking and still sweating. After a bit I was feeling slightly better and just wanted to go get my wet clothes off, and relax. When I tried to get up, I would take a few steps and get light headed and have to sit back down. I went to the porta potty, but nothing came out. Finally, I began crying because I was absolutely miserable and felt so sad, and frustrated that my body was doing this! The EMS came and wheeled me to the medical tent.

My husband and I tried to explain that I have Celiac and that my body was shutting down. They had nothing to help me. I began shivering all over, so they brought one of those funky metal blankets. My blood pressure was low, but overall my vitals were ok. I knew I needed to eat, but I felt so sick and yucky, that I couldn't get to where there would be food that I can have. It was awful. The Dr. was really great about checking on me, and determined I was having body balance issues coupled with heat exhaustion. They kept me there about half an hour. I knew what I needed so I told the Dr., and he agreed to let us go. We slowly walked to a shady spot and I hung out in the grass while the hubby went to go get the car. It took me the rest of the day being gentle to my body to feel better. I could only eat little bits of food at a time, and kept trying to drink water.

So, here's what I learned. ALWAYS take food you can eat during an event. I am not sure what that is as far as endurance kind of things, but that's where I need help from you guys. Secondly, always bring food you can eat for after the race. Yes, they have lovely bagels and Powerade, but we don't get to eat them!!!! Last but not least, listen to your body. I had no business running this race without proper training, and I probably should have stopped at mile 5 when things first starting going wrong, instead of pushing my body on for 8 more miles!

Anybody have advice for my next race besides the obvious? I am not giving up, and I am not going to let this dang condition get the best of me. Today I feel like I lost, and that makes me mad. I will definitely do this race next year, and I plan on beating my so lame time of three hours and fifteen minutes! Has anyone else gone through an experience like this? What light can you shine on me?

Thanks!


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hez Enthusiast

I am so sorry your race was not what you wanted. My dh is a marathon runner and can get cranky if a race does not go his way.

First, I would realize that you were just dx. It took me 6 months before I even started to feel good, and I was not running! You may need some more time to heal. Second, it does sound like you have one answer, training. I can't tell you how much dh trains for these races! I really think you have great ideas for the next race regarding food. I would also add research to that list. I know peanut m&ms are safe. I am almost positive that powerade is fine, I know for sure that gatorade is. After reading one of my dh's gu it reads safe but I would not have it without confirming it is gluten-free. Sometimes you can find out ahead of time what will be on the race course. Then do research to determine what is safe.

Do not be to hard on yourself, you crossed the finish line! That is a heck of a lot more than I could do.

Hez

Laurad- Apprentice

Oh man, I'm sorry it was such a bad experience.

I'm not a runner, but I am a professional figure skater and on most Saturdays and Sundays we have 3-show-days (a.k.a. 6 hours of high energy skating and dancing). I NEVER go to the venue without powdered gatorade and a jar of peanut butter. When I'm sweating that much, I feel like I absorb water better if I put a little gatorade in it (but not too much or it will make me feel nauseous). I also eat a spoonful of the peanut butter at every intermission and the protein helps me keep my energy up.

I hope this helps at least a little, and I also hope your next run is WAY better.

billcorno Newbie

Hi! A middle school teacher, a runner who stopped training, and a newbie Celiac. And you're doing a 1/2 marathon? Do U.S. Marines run in your family?

I wouldn't do a 1/2 marathon without lots of long weekend runs and consistent weekly runs of intervals, pace training, etc. over the months before. Not if I want to finish without difficulty.

Personally, I can't do any food before long runs. With marathons (I've done nine) I do a Gel about mile 18. The rest is Accelerade and water. (I used to do Gatorade cut with water, but Accelerade has protein in it and other stuff that I find works.)

I did do an Ironman bar before one marathon, and that was my worst one. I was also doing Gatorade straight then, and I was a mess at the end.

You have to find what works for you, but for me, food doesn't get processed when I run, and just messes me up.

Hope this is somewhat helpful...

William in AZ

River Faerie Apprentice

Thanks William for the chuckle! No, no marines, just some old fashioned Irish blood! I used to think my dad was stubborn, and it turns out I am just like him!

So, it's been a week since my 1/2 marathon. I have been sore all week, but feeling pretty good as far as energy levels. I think I may go out for a quick three mile walk pushing my baby girl this morning. I feel like I have to keep going, and now I am even considering training for a marathon next May. That should be plenty of time.

You don't eat before races? I felt like I had no energy when I did the half. It was wierd. I guess I'll have to experiment with different foods, and distances over the next few months and see what works for me. I am ALWAYS hungry right now though. I find that even without running and burning energy, I have to eat several small snacks throughout the day. I keep those Bora Bora bars around, fruit, almonds, yogurt etc. to get me thorugh the day. Also, because I can't eat a lot of what I used to, I am losing weight pretty quickly, which is nice in some ways... after having three babies in four 1/2 years, I am happy to shed weight, but it's also kind of scary too. I am not a big person to begin with, so I will have to find a way to get back into training... gently.

Anybody have any ideas for training? I swam at a highly competetive level in high school. I have always been active into running, aerobics, cycling, etc. I have a pretty good athletic base. But now I am 36, with three close pregnancies in the past few years, and this fabulous new Celiac diagnosis. I am at a loss for how to proceed. My goals are to run another half marathon next February; this time with proper training. And there is a short tri I want to do (yes, I have done one of those before but it's been years) along with that marathon in May '09. I have never done a marathon, but I do think I can do it. Does anybody out there have some training advice, or know good resourecs I can check out?

Thanks!

  • 2 weeks later...
dhyte Newbie

Hello everyone,

I am new to this board (1st post).

For almost 2 years I have been trying to understand the pain in my right side (under bottom rib, sometimes I feel it more in the front, sometimes more in the back).

After reading this forum, I am convinced I may have Celiac disease.

I have been through so many hoops with my doctors, they are probably sick of my complaining by now.

(I had surgery to a malignant bladder tumor in June 07, so other complications from it). The tumor was found while searching for the cause of my flank pain (which is still unresolved almost 2 years later).

I have had multiple MRIs, colonoscopy, etc trying to diagnose. After the last round of tests, they said they would refer me to a pain specialist if it persists. I have not gone that route yet....

I have to do more research to understand what the proper testing is to diagnose.

On a related note to the original poster....

I am an endurance athlete (running and triathlons). This year or so has been a real decline in my ability to go long.

Almost every marathon or Ironman triathlon I have done in the last 18 months has been a huge disappointment.

I don't usually notice the side pain so much while competing (I think I block it out), but I get severely fatigued (more than what I am accustomed to), and then struggle badly. The only time I feel the side pain is during my longest runs (16-26 miles). I am occasionally very dehydrated/nauseous when I get to the end of an event lately....

I am 44, 6'2" 230 lbs (pretty big guy for endurance events, but I enjoy it - usually).

I am training for the NYC marathon in Nov 08. I don't know if I should change my diet this close to the race (about 6 weeks away).

Can anybody provide some advice ?

Dan

VioletBlue Contributor

Could you also be dealing with a blood sugar issue? Hypoglycemia is not unheard of in Celiacs, particularly right after diagnosis. Some of your body's reactions remind me of my early bouts with it. It took awhile for me to find a balance between carbs and protein and the intervals between eating that allowed me to feel good.


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Happy Holly Apprentice

You are awesome to be willing to keep going. I'm not sure after all of that I would still want to run. You can beat this though. I have run several half-marathons, full-marathons, and ultra-marathons since my diagnosis. The trick is to train with food and drinks exactly like what you will eat during the race.

For whatever reasons, I seem to be sensitive to foods that are listed online as being gluten and wheat free. For example, M&Ms give me the most horrible migrane headaches that linger for hours and are not final until I go through some vomiting. Although they are very cute, M&Ms are not my friends. I also have problems with Gatorade -- not the premixed Gatorade but the powder, and the powder is what is served at races. I also cannot drink Sprite or Coke although they both are supposed to be gluten free.

I'm training right now for a 50K race, and I'm experimenting with various sports drinks during my training. I have tried one called "Accelerade". I found it on the web and read that it was wheat and glutten free. The day after I did a 10-mile run drinking this drink, I experienced massive hair loss (a ball the size of a quarter cup was in the drain). Then I discovered that this powder is "manufactured in a plant that processes wheat."

The trick is to discover this stuff during your training rather than during the actual race.

I have found a great nutrition bar called "PureFit." (Found it through this very forum) I haven't seen it in stores yet but order in bulk from their web site.

I don't think all of your symptoms during your race came from Celiac Sprue issues. It sounds like many of your symptoms may be from dehydration. I ran my first marathon with a friend who is definately NOT a Celiac. She intentionally did not drink much because she didn't want to have to go pea during the race. She finished but was so miserable and spent about an hour getting sick in the outhouse that she didn't run again for almost five years. She was suffering severe diarrhea and stomach aches.

Is it possible that your were experiencing some dehydration? How much fluid did you drink during your race?

Hi Friends,

Ok, just got home from Disneyland, and wanted to relay my story only because it might help someone else out, and because I would love some direct feedback. First of all my gluten free days began on 8-1-08. Since that day, my training for the 1/2 marathon came to an abrupt halt as I was scrambling around trying to make sense of it all; angry, frustrated, and having wierd body ups and downs. I am 36 with three kiddos ages 4, 2 1/2, and 1. I teach middle school full time and can barely catch a breath for myself.

So, having given up my training/running, I was not really ready to be running 13.1 miles, but I was going to do it anyway. Stubborn! (Probably mistake number 1.)

The night before I had a small steak, a few grilled shrimp, small green salad and a potato. Delicious! I got up at 4, ate a Bora Bora bar, 1/2 cup of coffee (give me a break it was 4 am!) and a banana along with some water. (Probably not enough food, so that was mistake number 2. )

The hubby and I arrived at the site around 5:30, stretched and waited until 6:10 which was our start time. The first four miles were glorious, although I was starting to feel a lag in energy right after that. I grabbed a Powerade (I had no idea it would affect me the way it did. I am now guessing that is a big no-no! Mistake number 3.) My tummy started getting topsy turvey right before a steep incline. At that point, I began to alternate walking and running. I felt the color drain from my face and I was sweating a ton. Fast forward about another mile. I figured that maybe if I ate something that would help get me through. I stopped in a 7-11 thinking I could find a Tiger's milk. No luck. I grabbed a package of peanut M & M's, figuring they would be safe. (mistake # 4?) I ate a couple and kept going, mostly walking miles 6, 7, and 8. I found a few of my friends, and tried to pace along with them until mile 10. I went back to walking because my body was literally shutting down. My mind felt fine, but my body felt like it was wading in quicksand. Not good. I grabbed a "gu" like product made by Clif. (BIG mistake #5. )Immediately my insides started their twistiness again, and I felt like I was going to now barely be able to make it to a porta potty. Somehow, I kept going. (Mistake #6, probably) So I walked, and walked, and walked until I got to the last 1/2 mile or so. At that point, I jogged, because there was no way I was going to walk across that finish line.

When I stopped running, I felt like my legs were going to buckle, I was barely able to catch my breath, and I felt completely light headed with polka dots starting to appear. I found the hubby who had gone ahead with my urging (mistake # 7) and he finished before me. I told him that I was feeling wierd, and we went to get some fruit and to try to find a shady spot. I sat down but I was almost shaking and still sweating. After a bit I was feeling slightly better and just wanted to go get my wet clothes off, and relax. When I tried to get up, I would take a few steps and get light headed and have to sit back down. I went to the porta potty, but nothing came out. Finally, I began crying because I was absolutely miserable and felt so sad, and frustrated that my body was doing this! The EMS came and wheeled me to the medical tent.

My husband and I tried to explain that I have Celiac and that my body was shutting down. They had nothing to help me. I began shivering all over, so they brought one of those funky metal blankets. My blood pressure was low, but overall my vitals were ok. I knew I needed to eat, but I felt so sick and yucky, that I couldn't get to where there would be food that I can have. It was awful. The Dr. was really great about checking on me, and determined I was having body balance issues coupled with heat exhaustion. They kept me there about half an hour. I knew what I needed so I told the Dr., and he agreed to let us go. We slowly walked to a shady spot and I hung out in the grass while the hubby went to go get the car. It took me the rest of the day being gentle to my body to feel better. I could only eat little bits of food at a time, and kept trying to drink water.

So, here's what I learned. ALWAYS take food you can eat during an event. I am not sure what that is as far as endurance kind of things, but that's where I need help from you guys. Secondly, always bring food you can eat for after the race. Yes, they have lovely bagels and Powerade, but we don't get to eat them!!!! Last but not least, listen to your body. I had no business running this race without proper training, and I probably should have stopped at mile 5 when things first starting going wrong, instead of pushing my body on for 8 more miles!

Anybody have advice for my next race besides the obvious? I am not giving up, and I am not going to let this dang condition get the best of me. Today I feel like I lost, and that makes me mad. I will definitely do this race next year, and I plan on beating my so lame time of three hours and fifteen minutes! Has anyone else gone through an experience like this? What light can you shine on me?

Thanks!

Happy Holly Apprentice

welcome to the site!

I too enjoy endurance racing. I have comleted about five marathons, 10 ultra marathons, and many half marathons. I ran before my diagnosis, during my diagnosis, and after my diagnosis. Let me explain my changes to you so that you can avoid the same mistakes I made.

First of all, giving up bread and pasta for two weeks and seeing if your pains go away may be a good test to see if you are celiac or not. My doctor told me to do this, and I thought she was insane. I was a bread LOVER. I told her I could not bear to separate from my beloved bread. She promised me that after two weeks I could eat all the bread I wanted. This was just a short test. Little did I know that after three days of no bread my life was changed. My hair quit falling out, my depression was pretty much gone, I was not sleepy any more, and I wasn't hungry all of the time as I was before. My puffy swolen face also disappeared and many people commented about how much healthier I looked. It was such a drastic change that most people who had not seen me for a few months did not even recognize me. After all of this I did not WANT to touch bread ever again. I love my new life.

Okay, but what about your question about changing your diet during training? When I first quit eating bread and pasta, I consumed almost exclusively meat, vegetables, and fruit. I noticed that I could not run more than 8 miles without experiencing horrible leg cramps in my calves. I was dehydrating myself fully and drinking enough electrolite enhancing drinks. I came to discover that my problem was caused by the lack of bread and pasta -- and this discovery took a very long year or two to figure out. I was running races literally stopping with leg cramps, trying to massage them out and finishing the race. I had eliminated the bread and pasta but not replaced it with a proper amount of carbs. I went and bought myself a rice maker. Now I eat rice every day (sometimes twice a day) and my leg cramps are completely gone. I bought the rice maker because many of the quick instant rices have gluten in them. With the rice maker, I put water and rice in the bowl, plug it in, and in 15 minutes I have awesome gluten-free rice.

If I were you, I would go ahead and eliminate the bread and pasta. Just think how much better your race would be if your pains were gone. Beware however, that you must replace the bread and pasta with carbs you can eat. For me rice was a life saver. I think baked potatoes would also be good, but I'm not sure I could eat one of these every day.

Good luck!!!

Hello everyone,

I am new to this board (1st post).

For almost 2 years I have been trying to understand the pain in my right side (under bottom rib, sometimes I feel it more in the front, sometimes more in the back).

After reading this forum, I am convinced I may have Celiac disease.

I have been through so many hoops with my doctors, they are probably sick of my complaining by now.

(I had surgery to a malignant bladder tumor in June 07, so other complications from it). The tumor was found while searching for the cause of my flank pain (which is still unresolved almost 2 years later).

I have had multiple MRIs, colonoscopy, etc trying to diagnose. After the last round of tests, they said they would refer me to a pain specialist if it persists. I have not gone that route yet....

I have to do more research to understand what the proper testing is to diagnose.

On a related note to the original poster....

I am an endurance athlete (running and triathlons). This year or so has been a real decline in my ability to go long.

Almost every marathon or Ironman triathlon I have done in the last 18 months has been a huge disappointment.

I don't usually notice the side pain so much while competing (I think I block it out), but I get severely fatigued (more than what I am accustomed to), and then struggle badly. The only time I feel the side pain is during my longest runs (16-26 miles). I am occasionally very dehydrated/nauseous when I get to the end of an event lately....

I am 44, 6'2" 230 lbs (pretty big guy for endurance events, but I enjoy it - usually).

I am training for the NYC marathon in Nov 08. I don't know if I should change my diet this close to the race (about 6 weeks away).

Can anybody provide some advice ?

Dan

Happy Holly Apprentice

Hi William,

Which Accelerade product do you use? I bought the orange powder, tried it one time during a training run, and the next morning I lost enough hair to fill atleast a quarter of a cup. I noticed on the container that there was an allergy warning that this was processed in a facility that also processes wheat.

I decided not to drink it and gave the rest to my husband.

I'm wondering if you are using a different type of drink than me. I bought the powder -- orange flavored. Are you by chance drinking the pre-mixed instead of the powder?

Hi! A middle school teacher, a runner who stopped training, and a newbie Celiac. And you're doing a 1/2 marathon? Do U.S. Marines run in your family?

I wouldn't do a 1/2 marathon without lots of long weekend runs and consistent weekly runs of intervals, pace training, etc. over the months before. Not if I want to finish without difficulty.

Personally, I can't do any food before long runs. With marathons (I've done nine) I do a Gel about mile 18. The rest is Accelerade and water. (I used to do Gatorade cut with water, but Accelerade has protein in it and other stuff that I find works.)

I did do an Ironman bar before one marathon, and that was my worst one. I was also doing Gatorade straight then, and I was a mess at the end.

You have to find what works for you, but for me, food doesn't get processed when I run, and just messes me up.

Hope this is somewhat helpful...

William in AZ

Takala Enthusiast

Good grief.

You will need to increase your amounts of protein and fats consumed, to act as your slow burning fuels. You HAVE to increase your natural fiber intake via fruit and vegetable consumption, to be able to hold moisture in your intestines. You just ate a little carb before doing that. That's crazy. You burnt it up real quick and couldn't replace it, and then insulted your special gut with bad stuff.

But you at least figured out the part about bringing your own snacks, drinks, whatever. That's good.

Drink water, water water... if you have enough of a dinner and a breakfast in you, you won't have to keep frantically trying to suck down as much sugars....

Mulitvitamin, calcium, magnesium, b- complex vitamins also.

But there should have been some serious protein, fat, and some vegetable in that breakfast, even if you have to get up early and eat slowly.

You are not a carbohydrate burner anymore. Convert yourself over and it will go better.

lovegrov Collaborator

Last time I looked Coke listed two Powerade flavors as definitely gluten-free and did the CYA dance on the others. None of the Powerades are SUPPOSED to have gluten, though. Last time I looked, peanut M&Ms were gluten-free.

richard

River Faerie Apprentice

You guys are so awesome. Isn't it wonderful to have a wealth of resources who combined have more knowledge than the specialists who treat us? Thank you for all of the support, suggestions, and kindness. I originally posted my experience to try to help other people who are new at this, and in doing so, I feel like I have a lot of new info and ideas to try.

I still have some questions though... I am almost at the end of my third month, and ready to have some blood drawn for the final diagnosis. I still feel kinda crappy some days... tummy is still bloated, energy level low with a little bit of abdominal/lower back pain. It seems different than it was before. It used to be my gut. Now I generally don't feel great. It's hard to keep active when the body isn't so good.

Maybe I need a vitamin? What kinds do you guys take?

runner girl Rookie

I too am a runner, have completed 3 marathons, several half marathons, one half Ironman and am now training for my first 50K Before long runs I usually eat a banana, have a power gel and wash it down with about 16 oz water. I always carry water on my runs and use powergel and clif shot blocks as fuel. You may want to try and find a recovery drink to use after longer workouts.

I also eat rice pasta as a pre long run/race meal. Tinkanyada sp? is a good brand. Rice also works.

Hope this helps!

  • 1 month later...
Guest hightop girl

I did a 1/2 ironman in June, and just ran the Chicago marathon. I qualified for Boston there, and it is the fastest marathon I have ever run. I was dx'd in Aug 2007. I don't carbo load for events, but also do not carbo load for long training runs. I think the key for me has been to train the way I intend to run the race... including food. I don't like gluten free pastas or breads, so I usually just have a salad with protein the night before an event, then banana and peanut butter the morning of. Then I have 1 or 2 Lara bars that I cut into bite size pieces and eat one or 2 bites every 5 miles. I think it just takes time to heal, find what works for your body, and train both your legs and stomach for long events.

  • 2 weeks later...
cvs Newbie

way to go! awesome goals. too bad about the challenges. have you thought about working with a registered dietitian that specializes in sport nutrition and is VERY aware of celiac disease? I'd recommend you get a personalized plan for hydration, fueling your body pre, during and post training and specific to your events.

billcorno Newbie

Yes, I use the orange and the lemonade Accelerade powdered products. They have not been a problem. I'm not a real sensitive celiac, I think, however.

The protein in this sports drink seems to speed recovery, or at least, I think it does. I do seem to recover a little faster after my long runs.

Sorry about your reaction to this product. I don't really have an answer...

William in AZ

Hi William,

Which Accelerade product do you use? I bought the orange powder, tried it one time during a training run, and the next morning I lost enough hair to fill atleast a quarter of a cup. I noticed on the container that there was an allergy warning that this was processed in a facility that also processes wheat.

I decided not to drink it and gave the rest to my husband.

I'm wondering if you are using a different type of drink than me. I bought the powder -- orange flavored. Are you by chance drinking the pre-mixed instead of the powder?

  • 4 weeks later...
Tinku Newbie

OK,

I'm going to give my celiac/whole foods advice to this sitch.

First of all, no one should ever run a marathon without tonnes of training and a practice run so you know how much your body can handle.

Avoid meat before a race - eating it drains our energy, just ask 6 time Ironman champ Carl Lewis who became a vegan to run faster. Go for Quinoa, Brocolli and Spinach - the last two have more protein than steak!

Bring as much food as you can carry - I would avoid any grains or processed foods and bring bananas, raw nuts, raw carrots, fresh squeezed OJ and ZICO coconut water (which replicates Gatorate etc but is natural). I would also bring LARABARs - Gluten free and made with only nuts and fruits. Stay hydrated and don't ever push yourself further than your body is telling you.

Another great boost, especially for celiacs is sublingual B Complex

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    • Kathleen JJ
      @cristiana First of all I want to thank you for your clear and gentle approach to my questions and emails. I was quite in shock because we were totally not expecting this scenario. We're 2 weeks later now and things have settled more. After the biopsie came back positive the rest of our family got tested as well but non of us have it. But now we know what we're up against, we told him. We laid out a table with crisps he likes (and are gluten-free) and had a little festive Friday-night moment and then told him that we finally had the results of his test. We had explained the gastroscopy to him that the doctor had found some substances in his blood and wanted to look at this tummy from the inside. We told him that he had seen that there was a little wound there, explaining the horrible pains he had had. That it was easy to cure this wound and make that it never would come back: leaving out some type of foods. Both our children had been asking us for a long time to take a packed lunch to school instead of eating at the cafeteria so we ended with the 'good news' that they now can bring a packed lunch. Our daughter was over the moon, our son at first as well but then he was really sad about leaving his friends behind at the dinner table (children who eat hot meals and packed lunches are different dining areas) and that he would not be able to sit with his friends who take packed lunches as the seats are set and he's the last one in and would have to sit alone. So that was quite sad [I went to the headmaster and asked her to maybe have a shuffle of the diner tables after New Years so he also can sit with a friend and she was going to look into it]   We are now trying out different types of foods. I at this point have no idea what to put in his packed lunch as before I'd take some sandwiches and put cheese or ham on them, but the gluten-free bread I've found so far doesn't really allow for that (it breaks and falls apart). So now I'm on a hunt for nicely tasting things to put in his lunchbox.   I've been shocked somewhat to see that a lot of gluten-free products are indeed gluten-free and thus healthier for him, but are also contain much more fats and sugar then their gluten full counterparts... I didn't expect that to be honest...   Anyway, you mentioned that your daughter and her friends love your gluten-free cake. I'm very interested in a recipe. It is customary in Belgium that if a child has his birthday, they give a treat to the rest of the class, and that treat is most often cake or cupcakes. He will not be able to taste anyones treats anymore so I asked the teacher for all the birthdays and am planning to bake some for him right before those birthdays, give to the teacher so she can give to him. But this entails I have a good cake recipe 🤭. Would you be so kind to share this with me?   Kind regards, Kathleen
    • Raquel2021
      Yes stress can .make the pain worse. That being said it is taking years for my body to heal. I am not able to eat out as 98 % of restaurants do not know how to cook for celiacs.  I only eat out on special occasions. Any time I eat gluten I feel there is a tourch going through my digestive system specifically in the area you have mentioned.  Like where the deudenal is . I am very sensitive to cross contamination so any small amount of gluten makes me sick.
    • trents
      @Ems10, celiac diagnosis normally involves two steps. The first one is serum antibody testing which you may have already have had done and are waiting on the results. The second step involves and endoscopy (aka, gastroscopy) with biopsy of the small bowel lining. This second step is typically ordered if one or more antibody tests were positive, is a confirmation of the serum antibody testing and is considered the gold standard diagnostic test for celiac disease. Now hear this, you should not be eating gluten free weeks or months in advance of either kind of testing. Prematurely going on a gluten free diet can and will sabotage the results of the endoscopy/biopsy should you get a referral to a GI doc who would want to do that. Eliminating gluten from the diet causes causes inflammation to subside which allows the small bowel ling to heal such that the damage they would be looking for is no longer there.
    • Scott Adams
      Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.  
    • Scott Adams
      It might make sense for you to find out if they've run a celiac disease test on you, and if not, consider planning for it.
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