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Member Since 29 Nov 2008
Offline Last Active Apr 07 2014 05:17 AM

#910100 Been Awhile

Posted by on 24 March 2014 - 11:57 AM

I haven't been on here is quite some time and thought I would let everyone know how I am doing.  Celiac wise I'm doing great.


Last October I decided to take charge of my life and to do something about the chronic edema I had been suffering with for years.  I was tired, miserable and hated wearing compression hose.  My good friend drug me to a zumba class and that's all it took.  I have been doing zumba and spin classes ever since and hired a personal trainer back in Jan.  I have lost a total of 20 pounds and I'm the most fit I have been in years.  I also have been able to ditch the compression garments!


Of course the exercise has brought on it's own challenges.  Just when things started going good I started having issues with my heart rate.  Long story short, I've been diagnosed with IST (inappropriate sinus tachycardia).  It really hinders my activity level.  I'm not going to let that stop me though.  I'm currently under the care of a cardiologist. 


So all in all, I'm doing good.  I've missed this forum and hope to be on here more in the future.


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#832956 Surgery Went Well

Posted by on 28 October 2012 - 12:42 PM

Had my gallbladder surgery on Wednesday. Overall everything went well. I did have a vasal vagal reaction to IV morphine in recovery that caused my blood pressure to go as low as 85/31. So that kept me in recovery longer than expected. They had to wait until my BP went up to at least 100 to send me back to same day surgery. I was pretty nauseated all that day and when I got home I got sick, but felt so much better afterwards. Each day is getting easier and my incision(the only one) at my umbilicus is looking pretty good. Today I even baked some muffins and cookies.

I've been taking it easy on food and I started out on clear liquids and have been progressing from there. So far there hasn't been any problems. My mom and I made some chicken/quail soup in the pressure cooker Thursday and that really hit the spot. I still don't have much of an appetite but that's allright because I can live off my reserve. :lol:

All the nurses and staff were great and they went the extra mile to ensure everything was safe for me to take. They even had someone from the pharmacy(they have an in house Walgreens) to come up and talk with me and to fill my scrips before I went home.
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#828579 I Don't Understand How My Son Tested - Three Times

Posted by on 09 October 2012 - 03:45 PM

Sounds like my oldest son. He has been blood tested annually since my diagnosis 4 years ago. Every time blood work VERY negative. It wasn't until 6 months after my youngest son tested positive for celiac that I began rethinking the whole thing with my oldest. Last year I did take him to a GI and she did a scope/biopsy. It was completely normal also. The GI knew regardless of the results, that I was at least going to trial him gluten free for 3 months to see if he had any improvements in his symptoms. All I have to say was it made a world of difference. I did let him eat gluten after three months to "test" it out and after a reaction, he decided he felt better gluten free. He has been gluten free for a year now.

He is not diagnosed with celiac, but is non celiac gluten intolerant. He goes for his one year check up(a little late LOL) next month.
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#828413 Update, Survived 2 Weeks On Gluten For Test

Posted by on 09 October 2012 - 01:36 AM

Two weeks very well may not be long enough back on gluten to give you accurate results, especially if you were gluten free prior for any length of time. It is generally accepted that one has to consume gluten (appx. 2-3 slices of bread or equivilent per day) for 3 months. To have the best chance of accurate testing.

If you have now exhausted all your testing you are going to do, go back to eating gluten free if it makes you feel bad.
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#825756 Why I Still Eat Bread...

Posted by on 27 September 2012 - 03:13 AM

Sometimes there is no definative medical answers. You obviously have a severe reaction and have a need to be gluten free. When someone has a intolerance it won't show up on any tests. Elimination and your body reaction is the best measure.

My oldest son who is now 11.5 years old is gluten free and is not diagnosed with celiac. He has non celiac gluten intolerance. He has been blood tested annually since 2008 after my diagnosis, and every time his tests are a resounding negative. He has suffered constipation his entire life and was small for his age. Last year his symptoms got worse with daily abdominal pain/bloating/gas and nausea. This to me is not normal. Took him for the celiac blood tests again and a scope just in case he was a seronegative celiac. His scope/biopsy was normal also. I decided that it was worth a shot to put him gluten free because of his symptoms and his family history of celiac (mom and younger brother). Within 1.5 months all his symptoms resolved, he gained 6 pounds and his color was much better. He has also grown 4" in the last 18 months too. We did decide to challange him after 3 months and he did have symptoms. He decided for himself that he wanted to stay gluten free because he felt so much better. I thought that was a pretty big decision for a 10 year old to make. It's been a little over a year now and he his healthy and happy.

I don't know how old you are but do yourself a favor and go gluten free. You may never get any answers from doctors as to why you suddenly have this problem but you do. I hope you have the strength to do it so you can live your life the way you deserve..HEALTHY!
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#813845 For Those Who Are Bedridden And Can't Cook Or Afford gluten-free Products

Posted by on 26 July 2012 - 12:55 AM

Who helps you grocery shop? If you have someone, would they be willing to help you out some in the kitchen? Do you have any family or friends that would be willing to come by say, once a week to help you make up some snacks/meals for the week? What about inquiring with a local Meals on Wheels program to see if they could provide gluten free meals? Do you belong to a church that may be able to help shut ins etc.? What about contacting some charitable orginazitions or the food bank in your area?

Some food ideas that I can think of off the top of my head:

-fresh fruits/veggies
-gluten free Rice Krispies
-rice, corn, chocolate, honey nut, apple cinnamon Chex cereals
-cocoa and fruity pebbles cereal
-Underwood deviled ham
-Armour vienna sausages
-Dinty More beef stew
-certain varietes of Progresso soups
-canned fruits/veggies
-Bush's baked beans
-corn tortillas
-prepackaged deli meat(Hormel, Buddig, Hilshire Farms, Land O Frost, Applegate Farms)
-prepackaged cheese and cheese slices
-Jell O
-apple sauce
-hamburger patties/hotdogs/smoked sausage
-Nature Valley roasted nut crunch bars(almond and peanut)
-Lays Stax
-Sam's Mill pasta(my favorite and for a 16 oz. package is around $2.50 or less which is pretty cheep for gluten free pasta)
-Classico pasta sauce
-Mary's Kitchen and Hormel corned beef hash.
-canned tuna
-canned chicken
-there are some Taste of Thai quick meals in a box that are gltuen free
-Thai Kitchen instant rice noodle soups
-peanut butter
-Quaker rice cakes(big ones only and are labled on the package gluten free. They make a great base for all kinds of toppings)

I really hope you find a way to make it work. You deserve to feel better. Thinking of you.
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#779998 If You Have Celiac Disease, Would You Keep Your Children Gluten Free For Life...

Posted by on 11 March 2012 - 09:01 AM

If I was to have another baby now that I'm diagnosed, I would keep it gluten free until it was a little older because of the cross contamination issue. My youngest son and I have celiac and my oldest is non celiac gluten intolerent. However, I'm not having more children.

When I was diagnosed both of my kids were on a full gluten diet. I had them both tested and were negative, so they continued an normal diet. Two years later and because of new symptoms my youngest son developed we had him retested. He was positive so he has been gluten free since. As for my oldest, he was having his own issues so I had him scoped. All his blood work every year has been very negative. His scope was negative also, but I decided to trial him gluten free for three months. It made a big difference in him. He did do a brief challenge and then laid all the cards on the table. I gave him reasons to stay gluten free and reasons not to stay gluten free. I gave him the choice on what to do. He decided to stay gluten free for now because he said he felt so much better. Pretty big decison for an 11 year old.

Bottom line you have to decide on what is best for you.
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#770748 Tachycardia

Posted by on 03 February 2012 - 06:50 PM

I had horrible tachycardia when my ferritin was in the toilet. Have you had a full iron panel and ferritin test? If your thyroid is hyper then you could have tachycardia from that also. You need to find a good endocrinologist. If that checks out fine then maybe a cardiologist.

My normal resting heart rate is higher than the average and I'm very sensitive to anything that stimulates the heart. It is not unusual for me to have a resting heartrate of 90 or so.

I hope you can sort things out soon. Have you considered trying the gluten free diet again? It might bring you some relief. You may not be celiac, but there are plenty of people with gluten intolerance that are affected just as much.
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#762894 Blood Test Result Statistics - Place A Vote, Make A Difference!

Posted by on 06 January 2012 - 09:15 PM

My IgA tTG was positive. I didn't know about the other tests at the time. I had a positive biopsy, but my GI said I had a "choice" to either go gluten free and follow up in 6 months or continue eating gluten and repeat the blood work in three months. WTF? I went gluten free...DUH that was a no brainer given my test results.
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#762891 Malabsorption Issues

Posted by on 06 January 2012 - 08:58 PM

Digestive enzymes may help. When I was recovering from my 8 month malabsorption in 2010 (come to find out it was from gluten free oat cross contamination) I took prescription creon and it helped. I took it for three months along with a strict diet. I only need it now when I have a bad glutening.
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#761824 Mellow Mushroom (Pizza)

Posted by on 03 January 2012 - 02:28 AM

We tried our local MM about 4 months ago. It was nice to have an option for eating out. We all liked it enough, but I agree the crust was a little grainy and thin.

My oldest son(almost 11) went there yesterday with his friend. He ordered a gluten free pizza. I sent him with some money to pay for it(his friend's parents never let him pay though). When he got home I asked how the pizza was and if he chipped in some money. He told me his pizza was free! I said "free"? Apparently his gluten free pizza got cross contaminated and they had to make him another one. They gave it to him for free because he was understanding and patient.

I was impressed that they made him aware of the cross contamination and then made him a new one. He only brought home two pieces and his brother scarfed them down in a heartbeat.
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#761631 Already Seeing Improvements

Posted by on 02 January 2012 - 10:01 AM

Well, it had been 3.5 months, almost 4, since my oldest son went gluten free. Here are some of the improvements we have seen: weight gain of around 6 lbs., slowly starting to grow in height, increase in shoe size, bowel movements regular going at least every day to every other day and no more stomach aches/bloating/constipation.

So at the beginning of this I told him that we would reintroduce gluten after Christmas. Well, we did, and suprisingly he didn't get a horrible reaction. I do believe he had some symptoms, but were mild. Things he did experience were stomach ache, headache and some moodiness(not sure if gluten or just lack of sleep). He ate a total of 6 doughnut holes, three doughnuts, some bread sticks, 1/2 pizza, and some granola bars. This was over the course of several days.

I asked him what he would like to do today because school is starting back tomorrow. He told me he is probably going to stay gluten free.

I don't believe the 6+ lb weight gain is a coincidence at all. Some could argue that it was just his time to take off, but I don't think so. I just thought I would share an update...
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#760702 Feeling Low

Posted by on 29 December 2011 - 09:11 PM

In the beginning it can be really hard. I never realized how much gluten impacted almost everything in my life. I was mad, angry, jelous, and happy(to know how to feel better without alot of drugs) all at the same time. It was crazy. A lot of mistakes were made in the beginning, but it was a good learning tool for me. Three years into this and I still make mistakes. It happens, so don't beat yourself up.

Last year when my youngest son was diagnosed, I got to go through all the emotions all over again with him and then some more. I found myself having to check products that I usually didn't buy or want but he did. He had a hard time dealing with the emotional aspect of it at first. I wish I could have taken the pain away, but he needed to deal with it in his own way. Today he handles most things like a trooper. But occasionally he still has a down day, like today. He was telling me how it wasn't fair that his brother got to eat doughnuts and pizza(we are reintroducing gluten to him after 3.5 months of being gluten free). He was crying. We just let him work through the feelings and he eventually came out of it pretty quickly.

I bought a couple of books that helped in the beginning. Celiac for Dummies by Dana Korn and Celia's Marketplace grocery shopping guide.

I took a day and went through my kitchen and got rid of anything that I couldn't eat or the other's in the house wouldn't eat and donated it to the food bank. I set up a dedicated shelf in the pantry, drawer in the fridge, and small counter area just for the gluten eaters. I wanted my kitchen mostly my space since I do most of the meal prep. I gave the kitchen a good scrub down also.

I replaced any scratched/worn cookwear and plastic ware or gave them to hubby to use for gluteny things. I bought a new toaster, cutting boards, cooking utensils, pasta strainer, bakeware, griddle, and waffle maker. (a lot of my stuff was worn out anyway or hand me downs from my mom) This can be expensive so sometimes it's not feasable all at once.

Any baking items, condiments, herbs/spices that might have had cross contamination(I was bad about double dipping) I replaced. I banned any baking with regular flour and only made gluten free baked goods. The others were allowed to bring stuff in from the bakery if they wanted and it had to be handled as not to cross contaminate. All shared meals are made gluten free, no cooking to order or cooking two meals. I didn't want to go there.

I checked to make sure all of our personal care products were gluten free.

This all worked for the first year. Eventually I started having problems and had to eliminate any gluten free products that had gluten free oat cross contamination(I was aware of my severe gluten free oat sensitivity 7 months after I went gluten free, but didn't eliminate the cross contamination...see, mistakes still happened :P ) I also put my pets on grain free food after my youngest son was diagnosed since the kids do most of the feeding of the animals. They are doing well grain free too!

You can do this! Is it going to be hard? Sometimes yes. But all of the time and energy is so worth it to get my health back. I consider myself a veteran now and things are much easier now.
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#759516 Family Sometimes Makes Me Feel Bad...

Posted by on 24 December 2011 - 10:40 AM

Your mom should just substitute the brand of soup and not even tell him. I make homemade cream of celery and mushroom soup for recipes(since I never can find a safe one in the store for me) and they taste so much better. My husband preferes the homemade now. I'm sorry that hurt your feelings. In time it will get easier.
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#758500 What's The Best And Worst About Being Super-Sensitive?

Posted by on 20 December 2011 - 10:13 PM

The best thing is eating healthier and actually feeling better.

The WORST thing is being openly MOCKED by those less sensitive.

I agree with this. Those who post on here that are supersensitive will add that they are in the minority and that their reactions are not typical.

I'm not sure where I fall on the sensitivity spectrum, but I have had to eliminate a lot of gluten free items because of bad reactions to small amounts of gluten free oat CC. Smaller amounts of gluten CC get me now also. When I'm stumped I tend to look to the more super sensitives on this board to help me with ideas and places to look for problems. Some of the suggestions may not help but a lot have. It's nice to have a different perspective. So I guess I want to thank the supersensitives for being open and talking about it.
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