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Hi egs1707, Welcome to the forum! Irene is right, you should not be gluten-free until all testing is completed. The celiac disease tests are checking for immune system reactions and damage, and when you go gluten-free that starts to decline. So the tests may not show the true immune reaction that is going on or the normal damage. They may not show any damage in fact and you could get a false negative diagnosis. You body starts healing and out the window go the test results. Your doctor gets an "F" grade if they told you to go gluten-free now. But you aren't alone in having a doctor who doesn't understand the celiac disease testing process. Many of them are woefully ignorant of proper testing for celiac disease. That why the current estimate is somewhere in the range of 85% of celiacs in the USA are undiagnosed. It doesn't help when doctors screw up the testing themselves. Or refuse to test people. Which is also far too common. I was vegetarian for 5 years. I am not anymore and don't recommend it. It is hard enough living gluten-free and finding safe food to eat and adequate nutrition for healing a damaged body. I used to eat a lot of soy products when I Was vegetarian, but now soy makes me physically sick. We can sometimes develop reactions to foods we eat a lot of while our guts are inflamed IMHO. Soy is not a healthy food anyway from my reading. I can't do dairy now but may people who start out lactose intolerant end up being able to eat dairy after they have recovered. The best advice I can give is to avoid as much processed food as you can, and eat mostly whole foods you cook yourself at home. When you do cook, cook big, and freeze the leftovers. That way you can quickly take a small portion of food out of the freezer and reheat it. Being celiac it is more important to learn how to cook. Unless you are wealthy all those gluten-free processed foods add up quick. Plus gluten-free processed foods often are lacking in fiber and vitamins. You'll want to watch out for vitamin deficiencies also. Since celiac disease damages the villi in the small intestine, the vitamins and minerals etc are not digested and absorbed well. So celiacs can be low on vitamin D, calcium, and one other one I forget. Vitamin B-12 may be low also ( it is important for nerve health). Then there are some vitamins that vegetarians tend to have problems getting enough of also to consider. Adjusting to living with celiac disease means adjusting to a new diet and some lifestyle changes. There's lots of us that make that change every year though, it's not impossible. You will most likely end up eating better, more nutritious food than many of your peers. And you will avoid a pletora of additional health concerns that can come along with untreated celiac disease. Learning to cook can be an adventure and you may enjoy it once you start. you may find your taste in foods changes once you have been gluten-free for a while too. Recovery from celiac disease can take some months. The immune system is very serious about protecting us and doesn't give up quickly. Also it always remembers so it will react to even small amounts of gluten. I live with gluten eaters at home and I do fine. I just am careful about rinsing dishes off and so forth before using them. There is a Newbie 101 thread at the top of the coping with forum subsection. It may provide some helpful info. -
That's great to hear you are feeling better Nightsky. I really think when our GI systems are in distress already that it doesn't take much to set off symptoms. Once I eliminated the other foods that cause me symptoms that helped a lot too. And added some extra vitamin D to my diet and selenium. Many of us have developed reactions to other foods besides gluten and need to avoid them to keep symptoms at bay. For me nightshades, carrots, soy, dairy, and celery all cause symptoms. It took me awhile to figure out all those food culprits, but it made a big difference getting them out of my diet. But we are all individuals, and our bodies react individually. So you may or may not have additional food intolerances develop. Celiac is one of those life journey things and we learn as we go. Just keep the bottle of aspirin handy!
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By squirmingitch · Posted
I know that Lea & Perrins Worcestershire Sauce in the US is gluten free, I also know that in Canada it is NOT. This is a very reliable site: http://www.glutenfreedietitian.com/vinegar/ But it is in the US. I'm agast that the Irish Celiac Society says malt vinegar is gluten free. I wouldn't use it. No sense taking any chance at all. -
By Irene Joanne · Posted
You should never have cut out gluten until you had the biopsy done. It's much worse to have to go back on after you've been off gluten for a while. There's no way I could ever do the gluten challenge after being off gluten for even a month because my reactions got so dramatically worse. Stress definately can trigger celiac- before I was diagnosed - it got the worst after surgery and after a stressful time planning my daughters wedding. -
Hi not diagnosed celiac, Welcome to the forum! Your doctor should be sent to remedial celiac disease training. Since that probably won't happen, I suggest you find a new doctor. He doesn't know what he's doing when it comes to diagnosing celiac disease. You should not have gone gluten-free before completing all celiac disease testing. The testing for celiac disease depends on the immune reaction being active. Removing gluten before testing removes the antigen that causes the immune system to react, and lowers the chances of getting a correct test result dramatically. The University of Chicago celiac disease center recommends: ******************************************** http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/ Prior to blood testing we recommend 12 weeks of eating gluten. Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten. In the case of a severe reaction to gluten, a medical professional may opt to shorten the 12-week challenge and move immediately to an endoscopic biopsy. May, 2013 ******************************************** So you will need to go back to eating gluten before your endoscopy. That may cause worse symptoms than before when you were eating gluten. So it would have been better to do all testing before going gluten-free. Can you search for a celiac disease support group in your area? They exist in many parts of the USA and world. They can be a good place to get a knowledgeable doctor recommendation. There is also a doctors subsection of this forum where you can search to see if any doctors in your area were recommended.
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