This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc. Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
Here is some information on why tocopherols/Vitamin E are not something Celiac's need to worry about...... http://ww.glutenfreedietitian.com/vitamin-e-from-wheat-germ-oil/ I have never had a problem with this make-up ingredient and I have been gluten-free for over 10 years and am extremely sensitive too. Like others have stated, you only need to be careful with anything going on your lips or on your hands, as in hand/body cream.
Low WBC's are common for those with autoimmune disease, and that coming from a very good hematologist I saw about 6 years ago. She see's this all the time. After 10 years gluten-free, I still have lower WBC's but it doesn't matter as long as you are not getting sick all the time. I would say that if you have pain and are losing weight, there is something else going on and they haven't found it yet.......it probably is another autoimmune disease, which is common for us. It can also take much longer to completely heal from Celiac, if you are older. It took my cholesterol 10 years to come up to the levels that most people have so I know I am absorbing normally now. I was 46 when diagnosed. Muscle, bone and joint pain can just be from Celiac inflammation that hasn't calmed down yet. Have you been screened for the other AI diseases that can happen with Celiac?
It is absolutely safe to use their plates and silverware and glasses as I assume they do clean them? I apologize if that sounded snarky but this is an issue that comes up often and your question is a good one...it's the answers that follow that aren't always correct. I have been a diagnosed, very sensitive Celiac for over 10 years now and have never once become ill from using someone else's clean dinnerware. I become sick and symptomatic if I ingest crumbs, if that helps you gauge my sensitivity level. Dishwashers are safe, as are dishwasher liquids. They are extremely well rinsed by the dishwasher so no need to worry about that. That is assuming the dishes are rinsed before loading the machine. Dishcloths to dry your washed dishes will not come into contact with gluten as the dishes have just been washed. I have a gluten-free household as it is just my husband and myself and he eats gluten free as he feels better doing so, so I cannot comment on a sponge used for washing gluten dishes, other than to say they are rinsed well in hot water. That might be something you have to decide for yourself. Sorry if this seems like a simplistic explanation but I don't think many people understand cc and I hate to see someone become overly cautious when they do not have to be. If your family understands the basics of cc, you should have no problem visiting successfully. Hope you all have a good time!
A resounding yes to this! That was one of the many symptoms I had, prediagnosis. Horrible dizzy spells that got so bad, I hoped they didn't happen when I was driving.
Now the only time I get dizzy is during allergy season, when my ears sometimes have fluid behind the eardrum...which will cause a person to be dizzy. It is a rare occurance now, compared to when I was eating gluten.
Your immune system is overactive with Celiac Disease....not low. The trick is to calm down the inflammation and then everything else gets better. I got sick a lot also pre-diagnosis but not any more. I never get colds and do not take a flu shot as I never have had the flu. You should treat celiac first and then the virus second as, without proper nourishment, nothing will get better. Eating gluten-free bread is not eating unhealthy if you eat the right ones. Everyone thinks processed food is bad but not all of it is. If you do not put on weight soon, you may have to incorporate more foods choices in your diet. Just keep grazing in between meals and you should put on weight over time. Good luck!
I would have to check the package on whether they are organic or not.....they might be. Certain things I eat I don't care if they are organic and I doubt it would affect your healing process.
I was another one of those skinny, malnourished Celiac's but not anymore! I get trying to gain weight too and it won't happen on a strictly whole foods diet. I think that is not totally necessary and I was down to 92-94 pounds at diagnosis. Not that I am telling you to gorge on M & M's and junk food but I needed to eat carbs in order to gain and it never once set me back in my healing process.
Peanut butter is my friend....anything calorie dense that you can tolerate. You might want to try nuts.com for beans and grains...they have a certified gluten-free line that I use frequently and never had any problems. It is a popular site with the gluten free crowd. I also ate bread because gluten-free bread is usually more calorie dense than non-gluten-free bread and it helped me stabilize my weight. Canyon Bakehouse is good and I use Udi's as they have some bread that is higher in fiber and healthier than some other's.
Whole Foods has their own dedicated bakery in Cary, N.Carolina and they have a bread sold in their freezer section that is called Prairie Bread. It is shipped to all their stores in the US. It is a white bread with seeds and makes very good toast....and french toast. I wouldn't eat it in a sandwich as it is a denser bread but it is fattening and really helped me gain weight. I would have 2 slices of toast for brekkies in the morning with other food and it was filling and I tolerated it well.
PBJ sandwiches are calorie dense too. Eggs are good for the protein. I ate frequently at first with 3 squares per day and snacks in between. Dried fruits and nuts are good too.....really, anything that you tolerate well. Steady and slow as she goes.......you will heal but it takes a bit of time. Do not be afraid to add gluten free variety to your diet!
As others have stated, eating anything from a common bin or buffet line is a no-no for any Celiac. This is not a wasted lesson, though....you have learned another lesson on what not to do and learning how sensitive you are. We all made mistakes in the beginning so let it go, feel better and move on.
I always buy the bagged lentils, Whole Foods brand, particularly the red lentils. I am extremely sensitive and have never had a problem with their bagged beans. I have also never found any stray grains in those bags, either. Whole Foods is a reputable brand so give those a try when you are feeling better. Many companies will not label their beans gluten free, even though they are. It's a liability issue.
I thought that article had some interesting points to make and if need be, make a copy and give it to the doctor to read. They do not understand the link between the 2 diseases and if they make a mistake, it can cost a person their health. My brother had trouble regulating his blood sugar too.
A lot of people have wondered why my brother did not listen to me and do a dietary trial but he was one of those people who put supreme trust in the AMA and would need the guy in the white coat to show him pictures of his damaged small intestine to believe it. He also had to follow a low carb, low protein diet for the diabetes and kidney disease so I think his head nearly exploded over the notion he may have to go gluten-free also. What would he be able to eat? After 3 months of diarrhea, they finally referred him to a GI doc but he died before he could keep the appointment.
You have a cute little girl and deserve to see her grow up and give you grandkids!
You may find this article interesting.....http://www.medscape.com/viewarticle/747334
It is extremely important to find out if you have Celiac Disease if you already suffer from Type 1 diabetes. My brother was a Type 1 diabetic, diagnosed at the age of 24.
I was diagnosed with celiac disease at the age of 46, after coming pretty damn close to dying from it. I do not have diabetes.
My brother had episodes of severe diarrhea off and on all his life and his doctors attibuted that to his diabetes....which I have never heard of. After I was diagnosed with celiac disease, I begged him to be tested because I really felt he had it also. They ran the antibody testing, which tests I do not know, and kept telling him he did not have it. I kept telling him they were wrong.
My brother had another bad bout of it this past summer, since May, and was hospitalized in August because of a kidney infection......he also had kidney disease from the Type 1. On August 4th, I lost my dear brother to a massive heart attack that I attribute to the kidney infection AND all the months of diarrhea. You cannot have diarrhea for months on end without it affecting your electrolytes and then your heart. And those stupid doctors kept terming it "diarrhea of unknown origin". My brother was only 60 years old and could never get his health on track or stabilized. I will go to my grave knowing he had celiac disease and his doctors just missed the boat and he died.
I am still heartsick and angry about how they failed him. Please do not let this happen to you. They occur frequently together and if you have Type 1 and a lot of diarrhea, do not take no from any doctors. Do a dietary trial, if you have to, to get answers!
Kareng is correct.....and so is hubby. No need to have so much anxiety over being cc'd but it does take time to feel comfortable with the gluten-free diet. That will come.
As for your husband's comment about where your head is....I know I should stop right now but I think it was funny. But, then again, I have been with my husband for
32 years and I would have cracked up if he said that to me. That's what happens when you have been together for a long time.....there is more funny than anger.
Look at it from his perspective...maybe he is frustrated with your insistence over being cc'd by things that are not cc. The adjustment period is just as hard for family as it is for the person with Celiac.
Michael........I have Celiac and Sjogren's Syndrome, which is another autoimmune disease that is often seen with Celiac. It is one of those which is badly overlooked and missed by doctors. I diagnosed myself and then when I found a good PCP, she ran the blood work and discovered I was right.
What tipped me off was your mention of swollen salivary glands. Read up on Sjogren's for all the symptoms but it affects the eyes and mouth. The autoimmune system attacks the glands which produce tears and saliva, so your eyes and mouth become dry...which in turn makes it very difficult to swallow. I cannot swallow bread without liquids.
There is a blood test for Sjogren's so you should be screened. However, a negative test does not rule it out, like Celiac. It is antibody testing. I was very positive on my celiac panel and so were you so antibody screening might show something, if you have this. Good luck!
I would imagine, and this is just my opinion, that the DGP might drop faster as that is the test which checks for reaction to gluten. Once you stop eating it, the numbers should start dropping. This is why you need to be ingesting gluten right up to the testing date. The tTg tests for tissue damage (intestinal) and that number drops as a person heals. But as many people are on different healing schedules, you never know how long it will take.
I did not show symptoms of a dairy problem until I was 2 years into the diet. That happens to a lot of Celiac's....you feel fine for awhile and then some symptoms may return. So, if some days your son only wants milk and cheese, that could be part of the problem. Too much dairy can cause issues for a healing Celiac. The good news is that for many, dairy can be tolerated just fine after the gut heals. I still have to eat dairy lite but am fine with that. There are many substitutes these days for dairy, like soy or almond milk. Maybe cut back a bit on the dairy and try those to see how he likes them? Or just wait until you see the doc and have the repeat testing done.
I was in no way rude to anyone, cycling lady, and if we have posters coming on here making ridiculous claims that have no roots in fact concerning Celiac Disease, then they should be corrected. We have had trouble with people on this board before making such ridiculous claims that no reputable celiac organization would endorse or agree with. If this forum wants to remain a reputable source of information for those with Celiac disease trying to learn the ropes of this lifestyle CORRECTLY, board members need to pony up and correct the misinformation.
As for Celiac's who do not heal, I never said we all heal. The vast majority do heal well enough to become healthy again and lead perfectly normal lives. At least those of us who are optimistic do. An added piece of medical advice for some of you to think about......your small intestine has the surface area of a tennis court, if it was laid out flat. There is overlap in all that surface area, with regards to absorption. Carbs are absorbed in more than one area, as are other food groups and nutrients. Ditto for vitamins and minerals. This is God's perfect little design so that if one area is damaged, you still have the overlap that can take over. If you think you will not heal, then you probably won't. Half the battle with recovery is mental so if you are a pessimist, recovery may not be as good as someone who expects to recover and does the right things to do so.....which includes educating yourself from the right sources. You might have forgotten that I came very close to dying from this disease and along the way, acquired 3 more serious AI diseases to boot. Yet, 10 years later, I am a different person who manages Celiac and the other 3 quite well. There was never a time when I thought I wouldn't heal....that was not an option. This is not cancer.......how lucky we are that we have so much more control over our recovery than many. This is the message that I try to make people understand and keep.......do not give in, learn the diet well and stay optimistic because it will get better. I am not special and if I can get to this point, many others can and will too. Doctors are going to report on people who may not heal as well but there are many more who do heal well and these are the people who aren't running off to doctors all the time......they are not on the radar because they are too busy living life as a well person.
Dishwashers and vegetables and fruit are not suspect, unless you are talking a fruit pie made with wheat crust. The wax coating on fruits and veggies is safe also but should be washed off before consuming the produce. I know that sounds stupid but believe me, lots of people don't bother to wash produce and I am more concerned from a germ point of view than gluten contamination. Even those little stickers on produce are safe but they don't taste very good so remove them.
Celiac Disease Foundations and medical experts are the go to people for good information on what is safe and what isn't.....oh, and most of the people on this forum. I am sure if any of the mentioned scenarios on this thread were actually true, we would be warned by the experts and we would be keeling over with reactions every time we left the house. It can be very difficult to pin down the cause of symptoms, especially in young children. I would suspect daycare myself as other people just don't truly understand the cc issue, even when they are trying hard to do so. One small mistake a few times a week and symptoms return. If your son was diagnosed using blood work, then maybe re-run the DGP and tTg tests to see what they show? Maybe it isn't from gluten and he has developed a sensitivity to another food.
I wish you luck as trying to figure things out without becoming too paranoid about his food can be difficult.