[Guest]

Hi,Has anyone tested positive for celiac sprue? My gastroenterologist wants to see me today because I guess the results of my endoscopy show that the biopsy was consistent with the blood test, indicating that I have celiac sprue. For ten or eleven years now I've been told it was IBS. What should I expect?I would be so grateful for anyone's help.: )Thank you.********I just got back from Doctor. He says I have to be on a gluten-free diet for the rest of my life. He is sending me to a dietician/nutritionist and recommended a support group for celiacs.Are there any celiacs in this group?[This message has been edited by ibssufferer (edited 06-14-2000).]

 

[Guest]

I just read about this recently. The good news is you don't have IBS! I believe IBS is a name for when they don't know what a person has. It will take you a while to get used to no gluten but i am sure you feel so much better!!!!!Rubi

 

[JeanG]

Hi ibssufferer:Congratulations on being able to find out what is wrong. If you post your question on the IBS bulletin board at http://www.ibsgroup.org , I'm sure I've heard people mention over there that they are gluten free, and some have celiac. I'm sure they'll be glad to talk to you and help you out.

JeanG

 

[Guest]

Thank you, Rubi and JeanG for your very supportive comments. I am looking forward to feeling better - I sure hope that the diet makes a difference.I did post to the ibsgroup.org as well, thanks for the suggestion.Best wishes!

 

[Guest]

Hi,I have been on a gluten free diet for 4 years now and it does take some time to get used to avoiding wheat, however, once you have mastered it you are fine. Things to watch out for;* Going out to dinner (perhaps have a card which you can give the waiter) explaining no gluten, flour, wheat etc... As they sometimes don't know and it can become repeatitive for you and strike up tedious table conversations, which seem neverending. You will find most restaurants are pretty good about the GF thing the only problem I have ever come across was at an Italian restaurant. I think he was insulted by wanting to change the menu, so just understand from their point of view too. Ring before. I never eat at Chinese restaurants, I don't know what they put in their foods, but I get sick for days and days (once I was ill for around 2 weeks eating chinese). It may be different for you * Supermarkets have a health section that contains many gluten free products (a great one) or your handy health store. GF breads, cerals, pasta and biscuits... They taste a little on the dull side, but you get used to it. This is in Australia, not sure where you are.* get yourself a code detector booklet (from any book store) that translates codes on back of tins or food packets such as soups etc etc...* Purchase GF cook books* Don't think you can beat the system, as you will pay for it tommorow. It takes for a coeliac to digest wheat around 6 weeks.I eat lots of baked potatoes, they are a great lunch option.Anything else I can help you with, just email me.Jett

 

[Guest]

Hi everyone,It had been about 4 years since a had any flour, wheat or gluten as I found it makes me bloated, nauseous, gasy and lethargic. I was advised by the gastroentrologist to start eating wheat again (one week before) to see the effects on my stomach lining (this was my first endoscopy which I experienced yesterday) The experience of the endoscopy was fine (so for anyone who hasn't had one it's painless). In my almost incoherent state (after the op) the dr. advised my stomach looked quite red (obviously didn't like the wheat during the week, I think) and has taken two byopies to see if I may have Coeliacs Disease. Has anyone had the same experience??? Can the endoscopy tell whether you have IBS??? Any thoughts much appreciated.... Cheers Jett

 

[JeanG]

Hi IBSsufferer:Check out this site, it has good information on Celiac Disease: http://www.niddk.nih.gov/health/digest/pubs/celiac/index.htm JeanG

 

[Guest]

Opps sorry about the muliply replies, I pressed too many buttons.CheersJett

 

[Guest]

My sister has celiac sprue. Did you have the rash on your knees or elbows? Are you hungarian? I know these questions sound wierd but the rash is a symptom and it is a fact in medical journals that hungarians have celiac sprue. (We ARE Hungarian).This illness has changed her whole life. Celiac sprue is is very managable. She stuck to her "guns" (her diet), and she is cured. But she will always have to stay on the diet, (recently they allowed her to have oats on her diet). You have to stay on this gluten free diet and you will get better !!!!You have to get a bread maker !! There are many breads you can make with rice flour. She adds things like eggs and other types of "gum" things she gets at the health food store to make her breads. You can buy rice flour for cheaper sometimes in Chinese Grocery Stores. She makes Nestles Toll House Cookies with rice flour - they are great !! and she makes the best brownies in the world with rice flour using the recipe on the back of the Baker's unsweetened baking choclate squares box. (one bowl brownies). At Thanksgiving I make her special dressing for the turkey out of her dried bread. If you stick to your diet you will be cured !!!(PS. there are also places on the internet you can send for gluten free product mixes (muffins, waffles, pizza crust, even Angel Food Cake !!! It is expensive, but you are worth it !!)God Bless You - and good luck on your new beginning ......

 

[Guest]

One more thing.... For your information - the lining on your intestine was without the ridges. Your body was unable to take the nutrients out of the food and use it. This is very serious, my sister could have died from malnutrition, even though she is not thin. Take this seriously... and you will do wonderful and get ALL BETTER !!! She did and her lining is back to normal again. This took place after about 3 to 4 years.God Bless Again.... Stomach Troubles

 

[Guest]

Hi,Jett and Stomach Troubles, thanks for your replies to my post. Both of your replies were very helpful. Jett, I'm in the US. And Stomach Troubles, I am Italian and Irish. Jett, you asked if the endoscopy biopsy could show if you have IBS. I'm not sure, but I don't suspect that it can. In the last ten or elven years, I've had many tests (some worse than others) and none showed anything "abnormal" until the doctor I'm currently seeing thought to test me for celiac. It seems to me that they use the diagnosis of IBS when you are suffering but everything they've tested you for comes back "normal". Although, anyone who suffers from IBS knows that their symptoms are ANYTHING but normal. Stomach Troubles, it is so encouraging to hear that your sister is doing well and has even found a way to make toll house cookies. Many thanks for the tips. Best wishes to all.