Celiac AND IBS anyone
#7485 - 04/26/03 06:34 PM
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First of all, thank you to this BOARD!!!!!! This has been REALLY TOUGH for me...and you all make it much easier. ((((HUGE HUGS))))
Heather suggested on more than one occasion that my symptoms sound like celiac. So I've decided to go gluten free for two weeks...but I want to stay on the IBS diet simultaneously. Anyone have any info.? I checked out celiac.com...but I am wondering if other folks have ideas as to where to start (ie what foods to start out with) as I'm going to the grocery tomorrow (hopefully with a list) 
Thanks SO MUCH EVERYONE! I love you all...and I hope you all feel great!
P.S. Can you take equalactin and drink herbal tea on the celiac diet?
Love, hugs, and a happy weekend!
Ruchie
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Formerly known as Ruchie
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Hi Ruchie
I'm just waiting to hear back from the Doctor to let me know if I'm celiac. I'm sure hopeing not because as it is I have cut out so much out of my diet. I don't know if I can cut out Bread,rice,etc. What will I eat then? It will be that much harder. I'll let you know when I find out my test results.
Georgette
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Georgette,
I feel the same way! I am taking the next two weeks to cut ou gluten and to stay on the IBS diet. Not much to eat it seems! My doc is no help (he tested me for celiac with a blood test...but they're not fullproof), so I'm taking matters into my own hands (and with Heather's suspicion that I may have celiac). I'm planning on eating plain rice, plain potatoes, plain cooked carrots, and potentially plain chicken/fish. I'm hoping folks can come up with things I can add to this...but either way...I just want to know what's wrong with me! If I have IBS and Celiac, so be it...at least then I can begin to get well. That's most important to me!
I hope we BOTH don't have celiac...and I will pray that we don't! I hope you find out soon...please kep me posted! Thanks for responding! *hugs*
Ruchie
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Formerly known as Ruchie
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I, too, thought I might have celiac disease so completely eliminated wheat and gluten from my diet.
There are different breads and cereals that you can find that are wheat and/or gluten free. I'm sorry I don't remember the brand names, but you can find them in the refrigerated or freezer sections of health food stores or natural food stores (i.e., Whole Foods). The breads are good..especially after you get used to them. However, I found the texture to be different...very dense and sort of crumbly. If you keep the breads in the refrig or freezer, and toast them before you eat them they don't fall apart as easily.
Once I got used to the different texture, I really liked the breads. The cereals are good too, although I don't care for corn cereals so I had to get used to them.
Also, Whole Foods (do you have that store in your area?) had quite an extensive list of foods that they carry that are all wheat and/or gluten free which REALLY helped when shopping. Absent that, read labels carefully and you can find all sorts of good food that you'll be able to eat.
Hope that helps!
Barbara
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Barb,
You're WONDERFUL! I DO have Whole Foods near me...I will def. check them out. Do you happen to know if their stuff was Kosher? That is a BIG concern for me. I'll let you know what I find...thanks for your help! P.S. Do you have celiac in he end?
((hugs))
Ruchie
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Formerly known as Ruchie
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Hi,
I found my 6-page list of Gluten-free products from Whole Foods, and discovered it's also on the web. Here's the link: http://www.wholefoodsmarket.com/products/glutenfreeproducts.html
The bread that I liked is by "Food for Life."
I'm sorry, but I don't know if the foods are kosher...guess you'll have to check the label.
And "did I have celiac in the end?" Ooooh...bad pun! No, as it turned out I didn't have celiac.
I continued to have significant digestive problems even when I cut out all wheat and gluten-free products. I tried it twice, both times for 2 weeks and then discovered Heather's books and realized what my problem is.
I knew I had IBS, but I never knew about soluble vs. insoluble fiber. That's when I discovered that whole wheat flour, not wheat flour, was a trigger for me. In addition, some of the things that have helped me are that I always eat soluble fiber first (no more salads at the beginning of a meal), drink Citrucel, take digestive enzymes at each meal, eat small frequent meals during the day, and cook IBS-safe recipes. These and other suggestions that Heather writes in her books have helped me to have NO symptoms for 5 weeks now. Yea! That's a record! (And copious thanks to Heather and this board for changing my life!
Barb
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Barb,
Thanks BUNCHES! (((hugs))) I went to Whole Foods...couldn't find any gluten free bread! Maybe they'll have some soon.  I did buy things with Quinoa and I had some for lunch today and a potato for breakfast...so I'm on my way! I'll let you know how this turns out for me. Thanks for your help and support!!
Ruchie
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Formerly known as Ruchie
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Hi Ruchie,
Glad you found some things to eat at Whole Foods, but I'm surprised that they had NO gluten free bread. At my Whole Foods store they have several different kinds in the freezer section (all made by Food for Life). Hopefully you were looking in the correct place...?
Good luck to you. Please keep me posted on how you're doing.
Barb
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The FREEZER section...I missed that part  I'll have to go back and check that out! LOL
I am SO THANKFUL that Heather suggested trying gluten-free...so far so good (not that it's been more than 2 meals...but no complaints)! Better than it's been in a while...
Thanks again *hugs*
Ruchie
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Formerly known as Ruchie
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2 meals and counting...sounds GREAT to me!
Barb
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Hi Ruchie,
I sure hope that cutting out gluten might solve some or all of your symptoms. I got the blood test to check for celiac and it came back negative so I thought I didn't have it. I went to the GI Doctor a few days ago and because I still have a lot of symptoms he wants to give me a gastroscopy. He said this is the only way to be sure because he takes a tissue sample. This is where they will give me the same drugs they gave me for the colonoscopy and then run a tube down my throat. I am having a hard time thinking about doing this. Stressing a lot which doesnt help me at all!! But if I don't do it, I will never know for sure. I hate this, I hate having to go through this and never knowing what to eat and how it will 'set' with my system... it's awful...
I also suffer with CFIDS which is chronic fatige immune disorder syndrome and kidney stones and a tumor (benign) in one kidney and a cyst in the other. I get so sad over all this sometimes.
I am still eating some gluten because I am having a hard time cutting that out too right now. Gluten is in a lot of stuff you wouldn't expect it to be,and is sometimes hard to find in the ingredients.
I have been looking at the symptoms for celiac on different sites and I do have some of the symptoms.. One was white spots on fingernails which I have.
Please let us know if you feel better in a couple of weeks!
Hope you feel better!
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~GEA~
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GEA,
Thanks SO MUCH for getting back to me!!!
If I understood you correctly, a gastroscopy can tell you if you have celiac, is that right? What else can it tell you? My doc. refuses to believe I have anytihng other than IBS because the celiac test came back negative...but I did some research and the blood tests are hardly %100 accurate! I would be SO GREATFUL if you could tell me more about the gastroscopy...
I'm not sure I could go through all that again either! The colonoscopy I had about a month ago was hard to swallow...mind the pun. I don't know if I can go through all that again either (although, at this point, things are SO BAD I'll do whatever it takes to get better)!
I REALLY hope we, and this entire board, feel better soon! Thanks again GEA! ((hugs))
Ruchie
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Formerly known as Ruchie
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Hi Sweetie!
Oh I'm so glad I could help you... OK I am going to try and describe this the best I can. This proceedure is also called 'upper endoscopy'. The doctor can examine the lining of the upper part of your gastrointestinal tract, which includes the esophagus, stomach and duodenum. The Doctor uses a thin flexible tube which has its own lens and light source. Sometimes they use this test to obtain a biopsy to distinguish between benign and malignant tissues. Biopsies are taken for many reasons.
They also can check for helicobacter pylori( ulcers).
My Doctor said that they can't always be sure with the blood test and this is the only way to find out for sure if you have Celiac disease! You might want to check out this web site too. www.asge.org .This proceedure helps the doctor to evaluate symptoms of persistent upper abdominal pain, nausea, vomiting or difficulty swallowing. It's also more accurate than x-rays for detecting inflammation, ulcers and tumors of the esophagus, stomach and duodenum. Whew! I got some of this information from the brochure they gave me. I hope this helps!
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~GEA~
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Ruchie,
You probably have a similar support system in the US, but I am a celiac with IBS and I have belonged to an internet support group in Australia for 2 years now. Their address is coeliacaustralia@yahoogroups.com.
I get heaps and heaps of advice and information from this group. If you check out the American Celiac site, there probably will be a support group attached. Any way if you have any specific questions, just post them and I'll check through my stockpile of info for you. Good luck with the test, by the way.
Regards,
Bevp
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Hi Ruchie!
I found the gastroscopy far far less stressful than the colonoscopy. Actually, it was a matter of minutes and I would have it done every day if need be. Maybe it was because they did NOT give me proper anastethics? I know that in the States people get a lot of anastethics and are terribly afraid of doing treatments without (don't lots of women ask for C sections because they fear the pain of childbirth or is that a myth?) Well, anyway, they sprayed two different local anastethics into my throat. Then I had to bite onto this plastic ring through which they introduced the tube. And then down went the tube (they had warned me that I might have to gag a bit but I only had a mild urge to cough) and then it took less than 60 secs or so to take the samples. It felt slightly weird but not scary or painful. Out went the tube and I went home for breakfast. The only thing I felt afterwards was a lot of gas both in my stomach and in my bowels. I think they pumped some in to have a better look.
Even if where you are they do insist on knocking you out for the procedure, I'm pretty sure you won't have to go through the prep part (laxative etc) as for the colonoscopy.
If you want to rule out celiac, you should get the gastroscopy, if not you will worry forever about i.e. the tiniest bit of wheat in your soy sauce!!
Good luck
Susaloh
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Bev,
Thank you VERY much! I recall reading your post a while back...how are things going for you?
Can I ask you--what did you eat day-to-day to stabalize given you had celiac AND IBS? Many IBS staple foods have gluten...I'm finding potatoes to be my only staple. (I tired Quinoa yesterday and I was fine for a couple of hours and then I blew up like a balloon from bloating and was terribly gassy when the trapped air was finally released). My supicion though is that vitamins (and equalactin, the fiber supplement I've just started) might have gluten in them. Do you know where I might go to look into this? (The other possibility I've considered is the new fiber supplement is giving me problems. It's tough to know when you begin two new things together...it's also tough to know from one day...I just began gluten free yesterday!). I've read as much as I can on celiac and one important thing eems to be hidden gluten. I want to be as sure as I can that I'm not getting any hidden gluten in my vitamins or from anywhere else!
Thanks for letting me go on and on...I give you a LOT of credit for living with Celiac AND IBS...it's NOT easy (one is bad enough...both together is aLOT to handle). I hope you are doing well and feeling well...
Take care, and thanks for everything! ((((hugs))))
Ruchie
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Formerly known as Ruchie
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GEA,
Thank you SO MUCH!!! (((hugs))) I think we should BOTH get this testing done! I had an upper endoscopy once actually a few years ago...I think I was 19...and they were looking for an ulcer. Does this mean they automatically checked for celiac as well and I can now rest at ease knowing I don't have it? (Because the testing was so long ago...my files are probably in a basement somewhere) I wasn't showing sympoms for celiac at the time, just ulcer/acid reflux stuff. In any case, it probably won't hurt to have the endoscopy done again. It really wasn't so bad. In fact, I don't remember any prep. for it at all (I don't think I could eat after midnight the night before and the morning of and that was it)! They used an anesthetic...but it was hardly needed! (My mom had one done and she is allergic to many meds...so she was adamant about not having anesthesia...and she was fine without)!
Anyway, I'm def. considering doing it again if it will tell me whether or not I have celaic!!! I'll let you know what I decide. Do you think you'll go through with it? I thikn it's well worth it if it's just an upper endoscopy!
Please keep in touch!!!
Ruchie
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Formerly known as Ruchie
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Ruchie go through with the scope. It is no big deal! I was told I'd have a sore throat for a few days - never had one.
If you don't go through with the scope you will need one anyways to check for an ulcer from all your worrying! 
You can also call the Doc's office who performed your last scope and talk the nurse about your results.
Barb
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Hi Ruchie,
Glad I could help a little! Well, it sounds like from what other people are saying about the proceedure, it won't be too bad. The drugs they gave me made me pretty happy, actually. I just worry about the drugs because I am so very sensitive because of my CFIDS...it takes me a longer than normal time to recover. I plan to go through with it because I really want to know whether I have Celiac or not. I was so relieved when I got the results back from the blood test, but now I am all worried again! I keep thinking that I just CAN'T have this too! My Doctor has given me a script of valium if I get too nervous over this. I liked reading about how everyone else got through this test and that it was really no big deal.... At the doctor's office they asked me if I wanted to watch a video of the proceedure and I was so unerved at the time I was too afraid to see it!!!
I hope we both can get through this OK, and I will let you know next week after the test. There is no prep part except no food or drink after a certain time. I hated drinking all that stuff to make me go and go anyway!
Thank You for the hugs, I needed that! And Hugs to you too!
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~GEA~
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Ruch,
I just wanted to let you know that I went through an endoscopy last January and it went fantastik! If you have any questions at all, dont be afraid to ask..
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-Angela
Healed in Jesus' Name
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It's important to have the tests (the initial blood screen, and if warranted the follow up small intestine biopsy) while you're eating gluten. If you go gluten free for several weeks you can get false negatives from the tests, because your blood will no longer have gluten antibodies in it. So, see if you can get the tests scheduled asap.
Or, if you do go gluten free and it helps you, and the tests then come back negative, you can just stay gluten free anyway because it's worked. A lot of celiacs seem to find themselves in that position. They're tested for everything under the sun, it's all negative, their doctors write them off, and they find out through their own readings about celiac. They go gluten free, get better, then demand the celiac tests from their docs. Which then come back negative, because they've been off gluten for a while at that point. They'd have to go back on gluten, get sick, then take the tests again to get a positive. That's not worth it for many folks. My own aunt had this happen to her. She refused to go back on gluten just to get the tests to come up positive (she's literally bed-ridden if she starts eating gluten). I sure don't blame her!
Best,
Heather
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Heather is the Administrator of the IBS Message Boards. She is the author of Eating for IBS and The First Year: IBS, and the CEO of Heather's Tummy Care. Join her IBS Newsletter. Meet Heather on Facebook!
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Just for the info on IBS and celiac.
http://www.romecriteria.org/reading1.html
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My website on IBS is www.ibshealth.com
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Heather is the Administrator of the IBS Message Boards. She is the author of Eating for IBS and The First Year: IBS, and the CEO of Heather's Tummy Care. Join her IBS Newsletter. Meet Heather on Facebook!
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Shawn Eric, thank you a million times!! I'm gonna read over this info. a few times, and if I have questions for you, I'll ask. Mucho gracias!!!!!!!!!
Happy Thursday!
Ruchie
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Formerly known as Ruchie
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