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
I had some trouble with Vitamin Shoppe Vitmains. I can't be sure it was a gluten problem since I have other allergies/intolereneces. However, at the time I was taking them they only said wheat free, they did not say gluten free. You may want to double check your vitamins and write to Vitamin Shoppe to clarify whether they test for gluten or not. BTW, I have since found vitamins by Country Life that I can safely take. They are certified gluten free by www.gfco.org/
Thank you. Sorry to ask here, but really quickly and then I will stop. If I report a post does that report go to Admin (Scott) only or does the post go to the entire moderating team? And if the post is modified after I report it will Scott see the original or only the modified version?
Just to clarifiy I did not mean to imply that Steph was offended. I am not her nor do I know her personally. I meant only to say that I am hurt and offended by the insentivity of others. And that is fitting with this topic as it was asked what is the worst part about being supersentive. In my two years being gluten sensitive this has been the worst thing I have witnessed--other celiacs not showing compassion (not just in this thread but elsewhere) to those MORE sensitive then themselves.
So to be clear, are we allowed to say if "eating at such and such a restuarant made me sick"? Or are we allowed to point out that under 20 ppm makes some people sick and certain gluten free products make us sick? Is there a liabiltiy issue with pointing this out and naming company names? Because I have been on this board for almost two years and I only noticed in the last few months that whenever someone posts, "Oh I can't eat _____" there are two or three people pointing out that they are indeed wrong and that most celiacs can eat _____. I find this very counterproductive and demeaning to always be pointing it out. It may be true that most celiacs eat 20 PPm products just fine but how does it help the person with the problem of not being able to eat _____?
And then goes on to describe how to eat out carefully. Sorry but his statement is NOT true for everyone. It is his experience and he is free to share that but to share that when responding to someone saying they can't eat out is just as invalidating as what you implied Steph was doing IMO. My response was not meant to be angry. I am NOT angry. I am just very hurt that this website that used to be my positive support place has turned into a place where others are not allowed to share their expereiences without being questioned/doubted/told they must be doing somethign wrong. Lately I have noticed more and more posts saying we can't share if a particular gluten-free product makes us sick or if we can't eat at a particualar restaurant. You, IrishHeart, have always been kind and that is why I am so shocked at your hurtful responses above. I understand you didn't mean them to be hurtful but they were. I am not trying to hurt you back. I am tryign to make you understand where the supersupersensitives that post on this board are coming from. Perhaps I am doing it poorly. I apologize as we can't read facial expressions on a forum. But I am not angry. I am heartbroken.
I understand that you felt she was attacking you but are you not doing the same thing to her by invalidating HER experience of not being able to safely eat out? She should be able to share that without being attacked and put down and told in effect--"oh you could eat out if your were really careful". No. Some of us can't eat out. I didn't see anything attacking in Steph's post. I saw it as her trying to clarify why some people get tired of preparing all their own food--they can't eat out-- but your post was very hurtful, in my opinion. It's amazing to me that you don't see this. I'm NOT as sensitive as Steph and TH and yet I see them constantly harrassed on this forum for sharing what their life is like as super-super sensitives. They have NEVER claimed their responses are typical. They have NEVER claimed that ALL celiacs should have to live like they do. What I see is people reaching out hoping for some empathy or a chance to share their stories in hopes it might help the small number of supersensitives, and they just get slapped time and time again for it. It's for this reason I have not been around this forum a lot lately. I'll probably be banned or repprimanded for posting this but it's how I feel.
Sorry, I just answered your other thread and asked about sjogren's. Ignore my question there. Based on what you are saying about drs in your area, I think you may do better to find a speciailist to treat your sjogren's more effectively (I don't know what that entails but you may find new treaments if you find a better dr). Unfortunately, not all auto-immune diseases respond to a gluten-free diet.
Have you looked into Sjogren's? With these symptoms persisting while gluten free I would suspect an additional auto-immune disease.
ETA: Sorry I just saw your other thread that says you do have sjogren's. Ignore the above question but it's still a good idea to look into the possibility of your sjogren's or another auto-immune disease causing some of your symptoms.
Also, what exactly do you mean when you say somehting is sneaking in every few days? Are you really getting acidental gluten every few days or does it just seem that way because of your symtpoms not going away completely? If you are really getting gluten every few days then it's time to re-evaluate your life style and get more strict (take the house gluten-free if you have not, stop eating out, drop most processed food etc.)
If you have already gone as strict as you possibly can and are not sure if that "something sneaking in" is gluten or another intolerance than it may be time to do an elimination diet to try to pin down other food intolerances.
I know that's not what you wanted to hear, but I would look at these things (additional auto-immune diseases, additional food intolerances and cross contamination) before worrying about it being refractory.
Okay so I read the first chapter and then decided to skip to the chapter about celiac disease. Here are a few quotes:
"Wheat Belly is not a book about celiac disease. But it is impossible to talk about the effect of wheat on health without talking about celiac disease." Pg 75
"While celiac disease is not the most common expression of wheat intolerance, it provides a vivid and dramatic illustration of what wheat is capable of doing when it encounters the unprepared human intestine." Pg 76
He has some interesting stories of the history of celiac disease, some I knew, some are new info for me. I've read many of the articles he is citing here. While so far this is a good read and he keeps my interest, I'm not very keen on his focus on wheat alone as the main cause of obesity and many other health problems. I do think that eliminating gluten may be an answer for many but it won't be the answer for everyone. He seems to be prescribing a wheat free diet (he only used the term gluten free diet twice in the entire book) as a panacea.
I also had to laugh at the very start of the book because clearly he assumes most people reading it are his age or older. He used an example saying that our parents and grandparents were not obese and also did not exercise. He made a comment about his mother 50+ years ago never running. I'm in my early 30's and my earliest memories of my mother were of her exercising and dieting (duirng the 1980's), always trying to lose weight. My grandmothers on both sides were thin and frail with multiple health issues (I guess they would have been the same age/generation as his mother), my grandfathers were overweight. Pictures of my great grandparents on both sides show that they were obese--and they were born in the 1890's. He is using this generational thing to set up the premise that wheat has changed genetically in the past 50 years, however it's not very effective (IMO) if you are under 50 and have older relatives that are/were obese without having eaten that genetically modified wheat of today. It's a minor point really but it sets the tone for the book to me so far because it hones in on his target audience. People who are overweight, over 50 and have type 2 diabetes, heart disease, high cholesterol, etc. He is a cardiologist so I understand that's probably what most of his patients look like.
As the quotes above show, this is not a book about celiac disease. However he uses the rise in celiac disease diagnosis as "evidence" for why wheat is worse for people now than ever. The jury's still out for me on whether I buy his thesis--although my family has clearly suffered from generations of obesity while eating gluten, the majority of my peers who are thin with no major health problems eat wheat products on a regualr basis. So it's too early for me to draw as strong of a causal relationship as he is drawing between wheat and weight. I will keep reading, however.
Sounds like hypoglycemia or some type or blood sugar problem to me. I have hypoglycemia and I need to eat more protein than carbs or I'll be sick (light-headed, dizzy, nasueas, headache) and sleep just like you did after drinking the OJ. You should get tested for diabetes, however, just to rule it out.
Wow! That's terrible! It's one thing if the woman really were gluten free too but clearly she had no idea what that meant or she would not have said that or been so rude. On the other hand I think I would not want tons of people walking past my gluten-free food on a buffet with gluteny food in their hands. I would have asked the buffet staff to put the gluten-free food aside for me somewhere to avoid cc issues. It's stories like this that remind me why I always carry some food with me even if the place says they can do gluten-free. You just never know what kind of "mistakes" can happen.
Poor kid! Sounds like good news that your dr is on the right track and treating him for the TB. Don't beat yoruself up over the cc issues at school. It's awesome you were able to figure those out! It is sad about him having to sit alone but I've read that as a common solution in schools for kids with food allergies too. Some schools will allow the allergic kids to choose one or two friends to sit with them if the friends are good OR if the friends are willing to eat foods that don't have the thing the kids are avoiding. Maybe in the future he will have friends that are more understanding and will eat with him. Also if you don't work during the day or can take a lunch break I bet he would love it if you showed up a few times a week to eat a gluten-free lunch with him (in elementary school anyway--middle schoolers and up might be embarrased ).