Lisa

I am not quite sure where to go with this. But if it were me, I would request from my doctor to do a full blood work up (they used to call it an executive panel, don't know what the call it now.). It will show all your absorbsion/vitamine levels. Some may be low which will indicate a matter of interest by you doctor. All of this will lead him to other areas.

There also is a full blood work that can be done to test for celiac. I will ask others who are more familiar with this to post it. (As I will need it also to test my daughter)

Finding the source to feeling bad had been tough. But, if you have intention to be tested for celiac, please continue on your diet and do not go gulten free. To get a true reading continue to eat as you have normally do.

Others, please post in regarding the Celiac blood testing and the full panel needed to confirm regarding the blood work.

Take a deep breath and know that help is on the way. I wish you well in these next few weeks and please, always, feel free to post whatever questions you have and as many as you have.

We are all here to help each other. Welcome to the club.

Lisa B.

I am probably not to best qualified to advise. There are others here that are more experienced. Some people can have a wheat sensitivity, where others can have an intollerance of wheat and glutens. An intollerance, as in wheat and glutens are toxic to your body and therefore..Celiac Disease.

It appears that you have alot of things that you need to stay away from. Fatigue is classic for celiac disease as it was for me, not to say that an allergy could not creat the same symptoms.

Have you tried to be gluten free. If you have your testing, if you choose will be effected by the diet and yes, will show a false possitive, or negative for celiac disease.

I was digonosed with IBS for 27 years and because of a period of high stress the celiac disease kicked in. If I ate lunch, a half hour later I saw my lunch with 1/2 of my stomach acid in the bathroom. I had great fatigue, malaise,bathroom issues, and severe malnurishment due to malabsorbtion, vitamine defencies.

I had an endoscopy exams with biopsy which indicated flattening of the villi (to what degree I am not sure of). I have tried to be gluten-free for about 3-4 months and I am just now beginning to hold in my food intake.

If you choose to be tested, make sure that you remain on a Gluten diet. There are blood tests that can be done as well the endoscopy test, which is the "gold standard" to check for Celiac Disease. It is common that this disease/disorder can be carried by genes, which may effect your children.

I hope this will be helpful to you and I am sure that others will post in. Many are more knowlegeable than myself.

Please read as much as you can from the posts here. It truely has been a God-send to me and I have learned an increadable amount of information which has made it so much easier for me to change my life and perhaps save it.

We are all here to help each other.

Lisa B.

Welcome aboard.....What are your symptoms. That will be helpful.

Hi:

Thanks for posting in. There are several college age people that regularly post here. Some are having difficulties with the cost of maintaining a gluten-free diet while at school. Others have a difficult time with cafeteria food and finding the safe things to eat.

I am sure that your experience will be invaluable to them. Thank you so much for your offer to help.

Glad to meet you.

Lisa B.

I don't know about all this, but I bet richard is on top of this issue. If there is any help we can do to contact our Representatives in our local districts, I am sure that we can help make this happen, if not already.

I would like to join this issue as I used to work on Capital Hill (many years ago). I think that I have heard that they may need to list the six or eight related allergines on the labeling.

If anyone knows more information about this I would like to know.

Me... Dr. said low in D, daugher (chemist) says go out and get some sunshine -- full of vit. D. Try a cal. suppliment with V-D. That might help. Caltrate with D, I THINK is gluten-free, or Centrum with D is gluten-free. ---will have to check on that, with the Delfi Product List....but I do think it's ok. But, please verify.

Stress was the catalyst that kicked in my celiac disease reaction. I can pin-point it to the day. I am a public servant to our community and a town official told me that if something "bad" happended, that it would be my responsibility.....so, after that, I spent two months in the bathroom. I would quit today, but two of my board members have cancer and going through chemo and I don't have the justification. They show up, so there go I. Twenty more meetings and I'm out of there.

Stress can seriously alter your life. We all need to find some way to put stress where it can safely be handled, either through excersize, yoga, time out or finding some place alone that we can put things into perspective....then we can go about our day.

Take vitamines, get plenty of rest and know that what you have, you have not created. It happened to you. We all have times of weakness and they happen alot, but understand that you will have to power to do something about it when you get a hold of the world of gluten free. The quality of life that you would like to have is all in your hands. Yeah, so it's the pits. But take a minute and look at your life in the future.......

We have a saying in our home from an old Indiana Jones Movie....."he choose wisely"... I often use this with my girls (adult girls, well sort of).

Hello, well it seems that I just given a pep talk to myself. It was not intended to be but, it sure seems that way. Well...........stress is a very big part of celiac disease. Try not to take it out on others, but realize that it is just the struggle that you are dealing with and try to voice it to those close to you. With hopes that they will understand. Obviously, we have all been there and still there.

Hope this will be helpful and I haven't babbled too much.

Lisa B.

I sure hope that you don't have all the celiac symptoms........there are over 200 of them.

I lost weight due to malnurishment, but there are many many others that have gained weight.

Glad that you pushed your way through. Good for you!!!!

  Noelle126 said:

Thank y'all so much for your help! I am new to all of this and this forum is incredibly helpful!

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Celiacs helping Celiacs.... I love these little suckers!!!!

  deb said:

First let me explain there are no support groups closer than 150 miles from my small rural town.

I have had a few people ask me to help them with a gluten-free diet. 

I would like to start a support group in my area for those whom have a Gluten issue or have been diagnoised with Celiac's. 

I know there are a lot of others in our area who could benifit from help.

I have never been to a support group of any kind

How does one start a group?

What is the usually agenda for meetings? 

Does a group need to be backed by a national organization? 

How often do groups typically meet? 

Should any information forms or questionnaires be used?

Any & all help or suggestions will be greatly appreciated.  I am hoping to get started as soon as I can.

Deb

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Deb:

Check the web site for Celiac Sprue Association.  They will give you a phone number.  Give them a call and let them know that you would like to begin a support group in your area......They are all about that.  They will let you talk to someone and send you lots  of information to get started.  They would be more glad to help.

PS:  I'm all into these clickable smilies, just realized all you need to to is double click. 

  julie5914 said:

So has she still not been tested for celiac? I would really for push for this - that sounds like me before diagnosis, except I didn't have headaches every day. Should especially get tested since you have it.

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Nope. I did request one blood test from her PP, and then I called them after two weeks and they sent to results to MY Gastro Dr. (who dosen't know who in the heck she is). PP's nurse said it was neg., but I have seen not a copy, nor numbers.

Should we run the full panel, or go straight for the endoscopy? What do you think?

Headaches are mostly above her eyes and last all day, every day.

Thanks for your impute.

www.burtsbees.com.......there ya go.

Start with Bert's Bee Lotion. It is great.

I am in the same boat that you're in this year. Try going to the Recipe Forum and search for Thanksgiving Dinner. I'd be willing to bet there will be several there to get you started.

I do know not to stuff the Turkey with gluten stuffing, even if you don't eat it or your children. I think there is a sausage dressing recipe somewhere floating around this site. Give it a try, it will get you going.

I am also sure that others will submit other wonderful ideas and I will be watching closely. Good luck.

Lisa B.

Hillshire Farms is gluten-free and I buy it alllllll the time. Great with mustard and whipped potatoes.

I printed out the article posted yesterday regarding Dr. Phil Lempert on the "Today Show" web page.

I have also done a search on this site.

Dr. Lempert listed several things to be aware of in his article, which was very good and so very pleased that he choose Celiac Disease for his topic. But as he listed things to be wary of, he has listed maltodextrin, and corn starch.

Not to begin a whole new thread about this, but it is my understanding that corn starch and maltodextrin are both ok for Celiacs.

What I have gathered is that malt is bad, maltodextrin is ok, modified food starch is bad (unless checking to see if its corn), but modified corn starch is ok.

Whewwww, what a ride!!!!

Would anyone kindly verify this for me as well as the other newer members.

Thanks.

Lisa B.

Go to this site's home page and scroll down. You can get lots of information.

It is my understanding that all Hillshire Farms meat/brats are gluten-free EXCEPT THE BEER BRAT.

Seagrams 7 if gluten-free. Hope this will get you started.

Lisa B.

  Vickidan said:

What do I use when a recipe calls for cream of mushroom, or cream of chicken soup?

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Progresso Cream of Mushroom Soup can be used for cooking...although it has losts of sliced mushrooms in it and it is more liquid than Campbells.

  julie5914 said:

The Today show's Web site has a link to an article on Celiac in its header. Here is the home page:

Open Original Shared Link

And here is the article:

Open Original Shared Link

From what I can tell, his information is right on.

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Cool!!!!!!!

She is at a really tough age. She just wants to fit in with everyone else. Every one of her friends are trying to be the coolist of the kids.

As mentioned, before, give her a list of the safe things that she can eat out at fast foods and join in with the others (McD's French Fries for example) and there are many others. Candies that would be suitable for her to consume. Run it off for her and tell her that these are the things that are safe and they won't make her sick. Sooner or later, she will work her pain/food issues out.

Know her friends. This is essential. When you get close to her friends, a little at a time, you can drop hints that your daughter has digestive issues and those close to her will re-inforce what you have told them. A truely good friend would not someone close to them get sick by what they eat.

Tread lightly, a little at a time. They will listen to their friends more than you right now. This will last about five years....so get close to her friends. Have them over for a cook out that is gluten free and they won't even know it. Put on some music and let them be. Build a place where her friends are welcome. Always be a parent, but alway welcome friends to drop over. (You will learn, sometimes more that you want to, from friends. What your children don't feel comfortable telling you, remember your are not their friends parent and many times they freely talk about what is going on in their life. Don't react too much, just listen with interest. You will be so surprized what you will learn).

Ok...end of this, hope this will help. Been-there-done-that. Best of luck

(Anyone on the site that is pre-20 need not know parental secrets...so disregard this as fiction.....I made it all up )

  jrom987 said:

Hello!

As a new Celiac, I made my first phone call to Paul Mitchell concerning their hair products. I had such a good experience with the representative who spoke to me and I will feel comfortable making more calls! I did check the forum for information and did not find anything. If anyone would like this info, let me know. I am new here so I am not sure what protocol to follow.

Thanks for bearing with me! Jo Ann

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Pass it on for those who do not know. It is aways good to get totally researched information on products. Good going!!!

Lisa B.

  fisharefriendsnotfood said:

I just wanted to make this poll because I fell like I'm one of the only ones who was diagnosed very young (2 years of age). Okay, Thanks!

-Jackie

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Interested in seeing the results....good idea.

Lisa B.

Thanks for your responses.

Today, he switched her meds a little. For the stomach pain he wants her to try Hyoscyamine to be taken twice a day. For the headaches he gave her two Relpax (migrain med) to see if this will make the headache go away. If these do not work, he suggested that she go off Estrostepp (BC) for a month to see if headaches are relieved. Trying to eliminate possible sources before doing an MRI or endoscopy.

She is in college, making wedding plans, trying to pass the Praxis test (for ed.major), dad freekin about the cost of putting on a wedding and she is high strung by nature and a controll freak. HEADACHE STRESS IS HIGHLY LIKELY. Stress is making the IBS worse, constipation bringing on the headaches, and around and around we go.

Does all that make sense???

What do you all think? I do not now think that this is celiac disease but unless handled now, could very well be in the future.

Thanks for any input and those that have already posted in.

Lisa B.