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GlutenFreeManna last won the day on October 21 2011

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About GlutenFreeManna

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  1. 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/

  2. A reported post goes to the report center where any mod can choose to look at it. All most of us can do is make it invisible if it is offensive. Posts are rarely ever changed, just removed permanently if it's really bad. Some mildly rude statement by a person who is normally polite will usually result in a pm to that person explaining how the phrase was taken and asking them to change it. Repeated rude statements by one person may result in a warning, or having them put on moderator preview so we have to look at each post they make before approving it.

    We don't censor incorrect information, only bad words, rude comments, and spam.

    ETA: Someone has to tell us that they found a post offensive, we try very hard not to make the decision ourselves (since anyone can take the written word the wrong way),

    Again thank you for your help. I won't reply about this topic in this thread again since it's off topic.

  3. I think it's perfectly reasonable to share YOUR experiences (or a family member, friend you were with, etc), so yes, if a restaurant made you sick, then feel free to say something, if a product makes you sick, feel free to say something.

    I know that some people (mods among them) are worried that new people coming on to look for information will get the impression that NO ONE with celiac disease can eat out, or eat a certain product and they try to post clarifications saying that actually most Celiacs can eat that.

    If you EVER feel that one of these response went beyond clarification and into attack, then say something PLEASE. It's easy to get caught up in the emotions and forget that there may be other interpretations.

    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?

  4. 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.

    This is important to know.

    Since all we have are words on a screen, and no facial expressions, it's easy for eight different people to read a sentence eight different ways.

    If something really ranks you, then please either respond in the thread, or hit the report button, and tell us what you see the post as saying. It's the only way we'll know that something was taken amiss by someone else.

    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 _____?

  5. Sorry, but I never said those words. I never even implied them. Please do not put words in my mouth.

    I have never openly attacked anyone --in fact, I try to temper remarks of those who are critical because I feel bad when anyone is not treated kindly --and I certainly have never said a word to you about anything regarding the topic of super sensitivity.

    Wow, I have always been kind to you, GFManna, so I am very surprised by your angry response to me.

    You said that you agreed with Gemini who said:

    I think anyone who is sensitive can go out to eat successfully because there are restaurants who can produce a truly gluten-free meal.

    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. :(

  6. You do not have the right to negate my experiences and I respectfully ask you to please stop doing that.

    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. <_<

  7. 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. :(

  8. I'm very sensitive, probably a side effect of having the disease for so long. I wake up most mornings with tingling at the base of my neck, systemic dryness (hair, skin, mouth, nasal). The thing is that I'm symptomatic even when I'm not glutened, it's just at a much lower level. Is this indicative of refractory sprue?

    At this point, I would bet the farm that I have small fiber neuropathy. It started about eight years ago and the symptoms read off the list perfectly. Tingling? Check. Numbness? Check.

    Sicca Dryness? Check. Loss of Balance? Check. Weakness? Check.

    Muscle pains? Check. Twitching? Check.

    My GI symptoms have finally normalized after years on the gluten free diet, after I removed corn... but I still feel that I'm on thin ice.

    I don't feel like I have a handle on it anymore, not that I ever did. I don't know how I would do if I were truly gluten free, because I'm so sensitive that I can barely go a few days without something sneaking in - and it doesn't take much for everything to flare up.

    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.

  9. 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.

  10. Our local church cannery has apples and pears for a really good price, so I am hoping to get some today to can... this will be my first time canning anything.... even went out and bought the Mason Jars earlier this week, as I didn't have any.

    My only question is this: does anyone know of a website I can go to that has a tutorial for canning apples or pears, that they could share with me?

    I know of one that has a tutorial for canning peaches, would that be close enough?

    (I will share that website later, I don't have the link to it at the moment!)

    Try this website:


    Also if you can pick up a Ball Canning book it's worth it to buy--it's a thin book with all the recipes you could need, saftey info and step by steps in it.

  11. A few months ago, I went to a women's luncheon. I had called ahead and asked for a gluten free lunch and was assured that they could provide one. When I got there, the person in charge pointed out the gluten free food (it was a buffet), said that it had been specially ordered and to please not touch it. I ended up last in line and another woman took half of my lunch before I got to it. I went up to her and told her that it had been specially ordered for me because I'm gluten free. She told me that she was gluten free, too, as she picked up a regular sandwich to put beside the gluten free one on her plate. I pointed out that the sandwich she had just picked up had gluten and she turned and walked away. I stood there very surprised. I took the remains of the gluten free food and ate that for lunch.

    That is the first and only time that I've had that kind of experience. Most people are really supportive.

    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.

  12. So saw my son's Peds Dr. (Not the same Dr. from the hospital) and she redid the TB right away. She read it today and called it positive. Ordered a chest XRay for tomorrow. If the chest Xray comes back negative or clear she will put him on 9 months of antibiotics to make sure he doesn't get the disease and it just stays at him having been exposed to it. If it comes back positive, she said she will readmit him to the hospital under her care to run test to see what kind of bactria it is etc to make sure she gets the right medications for him.

    She went over blood test result with me and explained each one and went over the ones I was concerned about. She believes that his night sweats, nose bleeds and over all sick feeling could be a sign that the TB is an active infection and that the slight elevatued test results could be the indication to that. If the lungs are clear she is going to order a couple additional test to check a few things. We looked at the labs and he was tested for Lyme disease at the hospital Negative.

    I sat down with his teacher, principal and nurse today at his school and we had a long talk and discovered a few things.

    1.) His class took a field trip a couple weeks ago (which I knew) to a pumpkin patch (which I knew) That field trip, pumpkin patch also included a petting zoo. Which included hay and straw, including a wagon ride... on, um, yea straw. (that I didn't know)

    2.) His art room and teacher is seperate then his normal teacher and room. So while we have gone through and removed the gluten from there after the Play Doh incident at the start of the year, the school didn't think to do the same in his art class room. I am going in next week as a volunteer and going to see how things are run in there and go over everything with the art teacher. The principal has agreed to let me replace certain school supplies for his class to be all gluten free for the entire class.

    3.) Kids were messing with his lunch in the lunch room. Only lunch room monitors, not his teacher in there. Kids were touching his food on purpose to mess with him. He will be eating at a table seperate from his class. Which I don't like. But like the principal explained, the only way to ensure it doesn't happen to move him from it. Fankly I think they should just put him at the end of the table with his class, next to a kid who will leave his food alone. But his princiapl wants to be 100% sure and safe. I feel like he is going to be punished, by having to eat alone.

    So anyways, between the possible TB disease and all the exposure at school, it's no wonder he got so sick. It's amazing he wasn't worse.

    I don't think I will ever figure out everything we need to watch for. :-/

    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 ;) ).

  13. sorry i have not read it. but your post captured my interest. from what i have seen it looks like it shares characteristics and ideas with some books i like and have seen before. it seems broader than just weight loss. i think that is just the catchy title thing to get people's interest and get the truth out about the problems of gluten beyond just for those with celiac's. based off what i have seen i would try to have an open mind reading it but still try to be analytical/ "critical" and not just take everything as a cold hard fact. i am interested in reading it now. thanks for the post. sorry i could not help and have not already read it.

    You did help a little, thanks for posting. I had never heard of it before my friend gave me the book and then I started noticing a few people here mention it in posts so now my interest is peaked too. I went and read some of the reviews on Amazon. It got almost overwhelmingly positive reviews. The few people that gave bad reviews complained that it didn't really give a diet plan and prescribed a grain free diet (not just wheat free) which was preceived as being unsustainable for most people. I will read with an open mind and hope I learn something. I'm a very slow reader however and just thought I would pick some brains here first. :)

  14. Are you toasting the bread in a shared toaster? What brand of almond milk? I agree with pear, that's a lot of processed food. It's pretty hard to pin down what you are reacting too since you could have a problem with ingredients in any of the gluten-free products (additioanl intolerances are common), problems with cc or just have eaten too much processed junk for you body to handle. Off the top of my head the following foods from your list are common for people have trouble with as additional intolerances:

    Xantham gum in the Udi's


    soy--could be in the alternative milks, lunchmeat and mayo.

    Coconut milk (also usually has xathan or guar gum in it)

    too much sugar or corn sugar products (corn syrup in the fruity pebbles maybe?)

    nitrates in the meat

    Any of the flours in the bread or crackers--Tapioca, brown rice flour, etc.

    It really could be anything...

  15. A friend gave me this book recently and I was just wondering if anyone had read it. From it's cover I have a feeling it's going to prescribe a gluten-free diet for everyone. Under the title it says "Lose the wheat, lose the weight and find your path back to health." Just wondering how medically accurate it is or if it's just another book pushing a gluten-free fad for people wanting to lose weight. I lost weight when I went gluten-free but that's not why I went gluten-free and it's not the norm I don't think--while around 40% of us are overweight that still means 60% are normal sized or underweight. I don't like the idea of pushing a gluten-free diet for weight loss only even if it does help some people lose weight. I do intend to read with an open mind but just wonderign who has read this book? Any background on the authors credentials?

  16. Well you know your marriage better than anyone else. Just use your intuition and keep your eye's open. Could just be his job stressing him but I still find it strange that he just started criticizing you after 15 years. I hope he responds well when you lay out what you need from him. You don't deserve to be walked over but at he same time reacting too strongly could backfire. I'm a believer in "you get more flies with honey" and all that stuff....Just keep taking those deep breaths. :)

  17. hmm, now there's a whole different perspective. But if the situation isn't livable for Rachelle now, how could she continue to support it? I'd really have to think this through to see if I agree with what I understand you to be saying.

    I'm not saying things don't need to change as far as how much she does around the house--clearly things are unequal and unfair if he doesn't even know how to work the washing machine. That needs to change, but how she goes abotu changing it could make a big difference in whether it works out to be a positive change or not for their marriage as a whole. Sometimes a third party (i.e. a counselor) is better at making a man see how boneheaded and rude he is being. It may also reveal deeper thigns toolike maybe he's just a momma's boy that never had to do anythign and he's treating her like his mom. She has other kids to worry about she doesn't need to worry about him too...but her telling him that may not make the impact she would like.

  18. am I crazy?? I don't think I am, but I would like an honest, honest opinion.

    Okay, I know I know you least of all the others posting here but I have to disagree with some of the advice that's been given. First he criticizes your cooking and now he criticizes your housework?!? Are you newlyweds? If not then, girl, something bigger than housework and cooking may be going on. I don't want to jump to conclusions or freak you out but when a spouse is having an affair he tends to start criticizing his spouse a lot more even when she does everything right. I'm probably biased in this direction because I've seen it happen to a lot of my friends. This may not be the case in your marriage but he may be criticizing you to make it easier in his mind to get out later. Making him do all his own stuff will only push him away more. Get yourself to some counseling so you can get it all out in the open instead. Even if it DOES turn out that he is only concerned about your level of cleaning and cooking and nothing is going on with him at least you will have a chance to detail for him all you do and how unappreciated you feel. And then you can work out with the counselor a more equal split of the chores.

  19. Any idea where you can buy the Masa Harina? or a tortilla shell press?

    I have seen MaSeCa in most regular grocery stores--check the international sections if they have one. Be careful about which brand you buy--the first brand I tried had wheat cc in it due to being processed with wheat flour. I noticed only after it made me sick and after writing to the company that the bag had a warning that said "May contain wheat". The MaSeCa brand is safe and has not given me any symtpoms.

    For the press I had to order one from the big A website. I looked all over for one locally but could not find one anywhere. If you live in an area with a big Hispanic population you may have more luck.

  20. Any allergy can get worse at any time. Best thing to do is to avoid bananas and latex until you can get to see a dr. If it's an allergy then it won't matter if you stop eating the food as far as testing goes (unlike celaic testing). They will do skin prick and possibly blood tests to test for an IgE allergy. If nothing shows up in the tests the next step would be to eat a banana during an appointment while the dr watches you. I skipped this step in my allergy testing for milk (it made my mouth numb and my tongue and throat swell) but my dr gave me an epipen anyway based on my symptoms and a positive wheat allergy test. You may need a dr's note about the latex if you keep having trouble in lab. It should not be that hard for the class to switch to non-latex gloves but it may require going through the diability office at your school to get accomodated. In the mean time talk to your teacher about why you had to leave, tell him you suspect a latex allergy and if you can afford it offer to buy a box of non-latex gloves for the class. At the very least you will need some non-latex gloves for yourself so if you are going to be buying a box for yourself you might as well share with the class or at least share with your lab partners that you work closely with. I'm sure if you talk to the teacher you can work out a solution so that your health won't be compromised and your grade won't be compromised by missing anymore lab.