BeckyFL Posted April 4, 2009 Share Posted April 4, 2009 My 21 year old dd has had so many problems. IBS, anxiety, depression, sinus infections, a bit of anemia, etc. She's done with school now, but the thought of holding down a job is daunting. In researching I see that those symptoms are all on the celiac symptom list. Here are my questions: Does a blood test always diagnose or is it better to try the gluten free to see how she feels? If we go out to the health food store, can I get some ideas on some of your favorite products that taste good so that the whole "test" doesn't add to her stress? Any other advice in talking with physicians or anything else? THANKS!!!!!! Quote Link to comment Share on other sites More sharing options...
Mom0012 Posted April 4, 2009 Share Posted April 4, 2009 I would definitely start with a blood test, but if you get negative results, it would still be worth trying a gluten free diet in my opinion. You will get a lot more support from family and doctors if you can get a diagnosis though. As far as gluten free favorites, my son likes Van's waffles, Kinnikinnick pancake mix, Glutino flax bread (for toast only), The Cravings Place coffee cake, Namaste spice cake, Pizza by George, Annie's gluten free mac and cheese, Tinkyada pasta, and Glutina "nutragrain bars". Rice Chex cereal is gluten free. Be aware that gluten free products are very expensive. We limit these things and eat lots of rice, potatoes and lean meats for lunches and dinners and eggs and toast for breakfast. I hope this helps and good for you for trying to help your daughter figure out what's going on with her. Lisa Quote Link to comment Share on other sites More sharing options...
Cricket Posted April 4, 2009 Share Posted April 4, 2009 I was that age when I discovered I couldn't eat gluten. I had the blood test but it was negative. I also had the small bowel biopsy which I would not recommend! It's awful. That was negative. It wasn't until later that I learned you need to have eaten gluten before having those tests. I had already been off gluten for about a year before the doctors finally gave me those tests. So even though I don't have an official diagnosis, I'm sure I have celiac. I certainly can't eat gluten! Ditto to what Lisa said about the food. De Boles makes rice pasta and that is good. It reasonably priced too. I find that at Walmart next to the other pastas. Corn tortillas are gluten-free too. Make sure to double check sauces since enchilada sauce can sometimes contain flour. Quote Link to comment Share on other sites More sharing options...
SilverMoon Posted April 4, 2009 Share Posted April 4, 2009 The blood test is like a pregnancy test. Positive means absolutely yes, negative doesn't mean much of anything. The diet certainly is a good and reliable place to start. Try about six weeks of a strict gluten free diet before testing it with a gluteny day. My ds had symptom changes two days into the diet change, and consistently improved with huge changes through the first two months. :) Getting even a little bit of gluten contamination would knock him back to start. Anyone that spent any time with him could see the drastic differences. (Well, not the inlaws, but I'll save them for another thread) If you really want a test first, check out www.enterolab.com . They do a stool test, being on or off gluten beforehand isn't a requirement, and it's highly recommended in the celiac community. It is fairly new technology so most insurances won't cover it. http://www.celiac.com and http://www.glutenfreeforum.com are good places to start reading. Quote Link to comment Share on other sites More sharing options...
LynnG in Arizona Posted April 5, 2009 Share Posted April 5, 2009 Make sure you get the blood test before you start the gluten free diet. And I'll have to disagree with the previous poster on the upper endoscopy. Two of my daughters have been through three of these, and though it is done under anesthesia, otherwise it's pretty simple and painless. No prep before hand, as there is with a colonoscopy. This is considered the gold standard in getting a celiac diagnosis. Quote Link to comment Share on other sites More sharing options...
Caroline Posted April 5, 2009 Share Posted April 5, 2009 Make sure you get the blood test before you start the gluten free diet. And I'll have to disagree with the previous poster on the upper endoscopy. Two of my daughters have been through three of these, and though it is done under anesthesia, otherwise it's pretty simple and painless. No prep before hand, as there is with a colonoscopy. This is considered the gold standard in getting a celiac diagnosis. My dd also had the upper endoscopy, and it was not a huge deal. She did take the pictures of her intestines in for show and tell. Quote Link to comment Share on other sites More sharing options...
athena1277 Posted April 5, 2009 Share Posted April 5, 2009 Make sure you get the blood test before you start the gluten free diet. And I'll have to disagree with the previous poster on the upper endoscopy. Two of my daughters have been through three of these, and though it is done under anesthesia, otherwise it's pretty simple and painless. No prep before hand, as there is with a colonoscopy. This is considered the gold standard in getting a celiac diagnosis. :iagree::iagree::iagree: Definitely get her tested first! It's best to have a confirmed diagnosis. Yes, it stinks to wait when she could start the diet and feel better sooner. However, when you start playing with the diet first, you tend to not get the proper diagnosis and you don't want problems down the road when a doc won't believe you have CD. Deal with it now, not later. BTW, my dd has CD and we like a lot of Gluten-free Pantry mixes. We use Beth's All-Purpose Flour that they make as a substitute for flour in all kinds of things with great results. Also, Whole Foods has lots of GF baked good in the freezer section. They make them at their own GF bakehouse. The quality of their stuff is great. Quote Link to comment Share on other sites More sharing options...
keptwoman Posted April 5, 2009 Share Posted April 5, 2009 I would definitely start with a blood test, but if you get negative results, it would still be worth trying a gluten free diet in my opinion. You will get a lot more support from family and doctors if you can get a diagnosis though. I agree. I didn't have the blood test because I self-diagnosed after years of being fobbed off by doctors. I just slowly narrowed it down to gluten. Then after I had been GF for a year I spoke to my doctor who suggested "glutening up" for the test. So I ate one massive (and immensely enjoyable at the time) meal of fresh pasta and had the test which was negative. I suffered the after effects for a month. Then I learnt I need to eat a decent amount of gluten for a much longer time to have any chance of a positive result. I refuse to do that to my body so I live with no diagnosis. I tend to just say "I have celiac" rather than "I can't eat gluten" because it gains more respect and credibility but it would be nice to have the test result to back it up. And the backing of a doctor who believed me because there was proof kwim? I'm fairly sure I have it but will never be 100% certain. All that to say Start with the test but even if it's negative just go ahead and try the diet. It's been life altering for me. Quote Link to comment Share on other sites More sharing options...
Supertechmom Posted April 5, 2009 Share Posted April 5, 2009 it is best to get the blood test and then the biopsy but please understand the tests DO NOT RULE OUT celiac. EVER! No matter what the drs say. it can only rule it in. ANd it is highly possible to get negative results. In my experinece a negative result gets you a gi dr who refuses to tell you to go gluten free and then decides you have IBS or Crohn's or are just "stressed" and then you need lots of medicines that you typically can't take pregnant. :glare: So what was the point of all that? In my experinence a positive is just as bad. Then they tell you have Celiac and don't know anything about how to live with it. THen every dr you go to says "Oh that must be because of your Celiac" regardless of what the problem is and insurance refuses to carry you on a private policy. Our daughter who is listed as 'pre-celiac" since she didn't have the full damage but would have in the drs opinion if we had been able to go on eating gluten until she developed the full damage, can only get coverage through us on a work group policy. :mad: So in reality, I would just do the diet. Check everything and go gluten free in everything -you will be amzed at how much stuff you wind up tasting thru the day that you never thought you would ever ingest. And since it is summer, it wouldn't be bad to eat just fruits/veggeis and plain meat for awhile. Reset the tastebuds before moving onto gluten free pastas and such. I'm still shocked sometimes at the taste of some things. ANd it can take forever to recover. I've now been gluten free 14 months and it was only after 9 months that the "IBS" sypmtoms stopped. It was only after year that I felt like I might get my life back. Sometimes it is not a quick fix. Sometimes it is overnight like it was for my baby. Good luck! I wish I had known at 21 about this. I may have saved myself a lot of issues. Quote Link to comment Share on other sites More sharing options...
keptwoman Posted April 5, 2009 Share Posted April 5, 2009 Thats really interesting Sevin! Sounds like a diagnosis can be just as bad as none. Quote Link to comment Share on other sites More sharing options...
kalanamak Posted April 5, 2009 Share Posted April 5, 2009 M If we go out to the health food store, can I get some ideas on some of your favorite products that taste good so that the whole "test" doesn't add to her stress? Any other advice in talking with physicians or anything else? If it is positive, esp with anemia, get the labs for "low levels" of vitamins. B12 is most effective as a shot, which is not OTC. Some people need quite a bit of D to bring a deficiency up, and it is not a vitamin you want to take mega-doses of unless you aren't absorbing it. Oh, and if there are significant deficiencies, you don't feel better *snap* once off gluten, and that can cause people to lapse in their diet ("that must not have been it"), so some labs are important, and patience, too. Some things, like iron, take a long time to build up again. Quote Link to comment Share on other sites More sharing options...
mom4him Posted April 5, 2009 Share Posted April 5, 2009 Here is a web site might help you in treating. http://www.breakingtheviciouscycle.info/ We have been following this diet now for almost 3 1/2 yrs. If you want more info you can send email at mom4him48 at yahoo.com Quote Link to comment Share on other sites More sharing options...
BeckyFL Posted April 6, 2009 Author Share Posted April 6, 2009 You always have such great information. The insurance thing is a little scary, I have to say. At this point, it would just be wonderful to get rid of these symptoms... whatever they are from! I guess we'll hope for a negative test and positive food results. That sounds like the best option (big question mark)? I'll keep you posted. Quote Link to comment Share on other sites More sharing options...
Cricket Posted April 6, 2009 Share Posted April 6, 2009 And I'll have to disagree with the previous poster on the upper endoscopy. Two of my daughters have been through three of these, and though it is done under anesthesia, otherwise it's pretty simple and painless. No prep before hand, as there is with a colonoscopy. This is considered the gold standard in getting a celiac diagnosis. I didn't have any anesthesia when I had mine. All they did was spray some numbing spray on the back of my throat so they could insert the tube. I still shudder to think about it! Anesthesia would have been wonderful! I didn't think how they probably do different things with kids. Quote Link to comment Share on other sites More sharing options...
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