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GeminiMember Since 25 Aug 2006
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Posted by Gemini on 19 July 2014 - 02:49 PM
Posted by Gemini on 17 July 2014 - 11:16 AM
My husband came home from work one day and told me all about a nutritionist who have given a talk a seminar that he attended at work that day. We both work for a health and wellness company who sponsored the seminar. He told me that the nutritionist clearly stated that M & M's contained gluten. At first I was in a bit of a panic. Had I read the label wrong? I looked again and I'm like, I don't know what she thinks gluten is but there are none in my M & M's
I wish there was gluten in M & M's...those things are so addictive, ya can't eat just one .......bag!
Posted by Gemini on 10 July 2014 - 11:33 AM
I have been diagnosed in February this year after being very sick for about 8 year but since last year April i started bleeding from my rectum. Doctors could not give me a proper explanation and i also have a pain in my right side more or less in the area of your gallbladder. They could not tell me what it was and after i went gluten free in Feb the pain subsided a bit but is back again. The gastroenteroligist seems to think it is my small intestine and related to my celiac. I also experience shortness of breath and fatique. I don't get anxiety attacks but i feel anxious and stressed. I hope you feel better soon and you can google The Gluten-free lie: why celiacs are slowly dying. It is very interesting and helpfull. I really benefited a lot from it.
Renee....that article is pure fear mongering. Most Celiacs are NOT slowly dying but people are free to believe what they want. You do know that Celiac's can certainly have unrelated health issues aside from their Celiac Disease or they could be suffering from additional food intolerances? I went way more than 8 years of being ill and wasn't diagnosed until I was 46 years old. I was about as sick as a person can be at diagnosis. But, over 9 years, I have healed fine and live a perfectly normal life. I know many other Celiacs who have done the same and most of us are older too.
I am very sorry you are having a difficult time but it seems you should be screened for other AI diseases also. Maybe see another doctor because bleeding should not be that difficult to find the cause of. I'm sure the reason you are anxious and stressed is because of all this that you have going on. But if you believe what this article says then it will be difficult to get better with that mindset. Good luck to you!
Posted by Gemini on 09 July 2014 - 10:40 AM
This is so awesome, Stephanie!!!!!!!!! I finally get to see what the little guy looks like and what great photos they are. The one with Fasano is great.....especially since I have seen the one of Fasano in his bathing suit from the Celiac Convention in Florida. Thanks to Irishheart, that's the image that always comes to mind when I see a photo of our Celiac Doctor God. Ha, Ha!!!!!!
I am so very happy that everything worked out well with DS's food during your stay and if you guys come back, for any reason, I will come into town to meet up with you. You have to come back because I know DS wants to. That's what happens when your kids start traveling.....they like it!
Posted by Gemini on 07 July 2014 - 08:48 AM
Congratulations on making lemonade out of lemons! This is what kicking butt and not whining about eating gluten free looks like. I was exactly the same way, only not as upset when diagnosed because I knew how to cook, so like you, I learned how to make great versions of all my favorite foods. I was just happy to learn my illness was caused by an actual disease and was not a mental illness, as so many docs insinuated. The only thing that would make it better is faster healing times but it takes what it takes.
You did a good job, sandsurfgirl! Pat yourself on the back!
Posted by Gemini on 03 July 2014 - 11:39 AM
Oh, and I was suggesting these steps as an alternative to oral antifungal medications, not an addition. I don't personally like the side effects and risks with antifungal medications except in extreme circumstances. And the yeast withdrawal with those can be drastic.
All in all, the toxicity of Candida is higher for anyone with Celiac than the toxicity of. Candida has been scientifically proven to have a surface protein identical the gliadin and invokes the same immune response. As long as you have Candida overgrowth, you have a constant Celiac reaction occurring.
Oh....this statement is so wrong. Candida overgrowth and Celiac Disease are 2 very separate things. I would love to see what you can belly up as proof that candida has a surface protein identical to gliadin and invokes the same immune response. I am well versed in Celiac and candida issues because I did actually have a systemic candida problem, from the fact I went many, many years without knowing I had celiac and it totally messed up my whole GI tract. I successfully treated it by going to a real doctor using the candida diet and those anti-fungals you don't recommend.
You have to eliminate refined sugars from your diet for a period of time because anyone who bakes knows what happens when you proof yeast with sugar. It multiplies like rabbits. You can successfully eat a small amount of fruit and use brown rice in the diet but no white foods because they are refined. No fruit juices, just whole fruit and it can't be overripe because the sugar content is higher. On top of this, an anti-fungal needs to be taken. I used powdered Nystatin but that was a long time ago and they may have different ones today. Diflucan is not recommended because it has serious side effects that can involve the liver so it is more of a short term anti-fungal treatment for severe cases. People with severe illness like Aids, when there is little immune system left, often have candida problems that can become life threatening. Their immune system can no longer keep things in check. This is when they use DiFlucan.
You may or may not experience candida die off and that resembles the flu. Yes, you will feel like dog pooh for a week or 2 but as an adult, suck it up and deal with it for the long term benefit you will receive. I have to say once you get past this stage of the game, it's amazing how good you will feel when you eliminate sugar and start to cleanse your GI tract of that nasty candida. I had thrush that never went away and it finally did for good once I did this regimen.
There are a few things to know....the symptoms of candida and celiac overlap and can mimic each other so make sure the underlying cause is not celiac that is being ignored.
I knew I had candida also because of the thrush. It just never went away until I followed the candida regimen. The Nystatin did not have any side effects for me....I tolerated it very well. Sometimes those old school meds work better with less side effects than the new wave of pharmaceuticals. I did really well after that for awhile until celiac reared it's ugly head even worse and because I had gotten rid of the candida problem, I started noticing those symptoms even more. Kind of like those who don't realize they have a problem with dairy until they go on the gluten-free diet and start to heal....symptoms return and it isn't gluten.
If you eradicate candida from your system, then over time, you can resume a more normal diet, including sugar, and it should not bother you. It is not a lifetime diet like going gluten-free is. For health's sake, I would not eat a diet high in sugar but a little sugar everyday never hurt anyone...except maybe a diabetic but even they can have a little sugar in their life. Candida is usually the sign of an underlying problem. If your GI tract is not healthy, things that are normally present can get out of control and wreak havoc. Another good thing to take, and highly touted by Irishheart for good reasons, are probiotics. They help to counter candida's affects and re-populate your GI tract with good bacteria.
It's all about balance.
Make sure you see a real doctor for guidance with anything which needs a specialty diet and meds on a daily basis. I know some docs are as stupid about candida as they are about celiac but there are those who recognize this as a real problem. The trick, I know, is finding them.
The last thing....eradicating sugar from your diet is hard......much, much harder than avoiding gluten. It tampers with your blood sugar levels at first and you feel like depression city. The first 2 weeks were horrible with severe mood swings. I thought that part much harder than the die off stage. Make sure you have a problem with it before taking this on because it just isn't easy to do. You can derive sugar from more natural sources like non-refined carbs. They still break down but your body has to work to do so and you won't have peaks and valleys like you do with refined sugar. And then there is fruit.......full of fiber too and not the same as downing a glass of juice.
Posted by Gemini on 02 July 2014 - 01:45 PM
I was thinking something along these lines but didn't say anything. My husband has vitiligo, which he's only had a few years. He also has type 1 diabetes which has been for 20ish years now. I think (working on diagnosis) that he also either has celiac or crohn's. (God... let it be celiac, far less scary!) I've noticed when he gets bad "flares" with his intestinal problems he also develops more "spots." So while it isn't specifically linked to a lot of things, I have no doubt that when his AI system gets all wonky that it's what is making him splotchy too.
I have a fun set of diseases myself, AI and otherwise. And while one isn't linked to any specific AI disease, it is common acceptance that it is far more common among people with one or more AI diseases no matter what they are. I know that some links are specifically established, and that's great. But I don't think it is fair to discount that AI diseases in general tend to be linked and cluster, regardless of what they are.
Yup...I agree, Addy! The key is to tame down the immune response and diet is always a good, first start. I think any one with any AI disease should be tested for Celiac.....simple little blood test! If that comes back negative and the immune problems are ramping up, I would just do a dietary trial for awhile. Can't hurt to eat gluten free
Posted by Gemini on 02 July 2014 - 12:06 PM
I am so happy to find someone who did exactly as I did. I went to Italy with a gluten intolerance problem but; just like you I said to myself …. how can you go to Italy and not eat bread, pasta, pizza, biscottie … etc. So I ate them all and did not suffer from any side effects of gluten for almost 3 weeks. I too came to the same conclusion that it must be the GMOs. As you see from your post most people think we are full of ……….. go figure; I know my body and I know when I have been poisoned. After 3 days back in the States and 3 lunches with organic wheat bread I am suffering all the side affects.
GMO's have nothing to do with Celiac Disease or how we react to wheat. If that were true, then no one in Europe with Celiac Disease would be reacting to wheat that they eat. That is about as silly a reasoning as it gets.
I would find it pretty easy to travel abroad and not touch anything that was off limits to me as a full blown Celiac. I have done it on many trips. I take this disease very seriously and would be in the hospital on my vacation if I were as careless and.....well......stupid as someone who apparently cheats all the time on their diet. You come onto a Celiac forum and tell us you routinely eat wheat foods? If you are actually a diagnosed Celiac, good luck with that. I mean, you certainly have free will and the right to eat whatever you want in life but to those who are new to this lifestyle and really need to be strict with your diet, don't make this mistake and think you can eat the wheat in Italy because you can't.
You will still be ruining your gut and it might ruin your vacation.
Posted by Gemini on 01 July 2014 - 12:45 PM
What IrishHeart and GottaSki said! They are veterans of this diet, as am I, and I am also like you....quite the puker when I sustain a gluten hit or eat food that I just cannot digest. Thank goodness I rarely, if ever, get glutened now....and I eat out occasionally at trusted restaurants that have never made me sick.
First off, no need to eliminate soy or dairy......unless you have in your face symptoms like bloating/gas/etc. after eating them. Not everyone has to stay away from them and it is not advisable to cut out too many foods when first diagnosed (from a whole foods perspective). I did not become symptomatic for a dairy problem until 2 years after diagnosis.
I still cannot tolerate too much dairy at one time so eat dairy lite but I was diagnosed at 46 years old so there's a difference between you and I.......age.
You may want to try digestive enzymes to aid in digestion because it is very common for Celiac's to have impaired pancreatic function and without that, you cannot digest food well in the beginning and guess what? You puke. Lamb is the one meat I can not eat anymore. It is a fattier meat and I just cannot digest it. It comes up pretty much the same way it went down so I never touch the stuff. Sorry for the graphics but I wanted to stress that throwing up can be common for a Celiac and it may have nothing to do with a gluten hit. Fattier foods are tougher to digest in the beginning so keep that in mind. Explanation: when your villi become damaged, they can no longer send signals to your pancreas to release the enzymes needed for digestion. That's how it works. Once you heal some, then your gut starts to work again, messages get sent and in time, this problem should go away. Just make sure your supplements are gluten free or you can ask your doctor to test you for pancreatic insufficiency. I never did that but it was obvious what the problem was. I used the enzymes and felt much better after meals. I rarely use/need them anymore.
Yes, eating out should not happen for a couple of months but once you learn how to inquire about and ask to have your food prepared safely, it is not a high risk endeavour as some like to think. It all depends on where you go and learning the correct way to have food prepared.....all the gotcha's of safe food prep. We can help you with that when the time comes.
Do not despair, buy some digestive enzymes because I think you clearly need a little boost with digestion or your food would not be coming back up. If it's looks like it is not broken down much, you need digestive enzymes. I used Enzymedica Digest Gold but any one that is gluten free will do.
Make sure it contains enzymes to break down fats, carbs and proteins, as opposed to ones that target specific food groups only. Also, a good probiotic would help also to populate your GI tract with healthy bacteria. These are the 2 supplements I always recommend because they help
get you over the hump towards healing.
Hang in there!
Posted by Gemini on 26 June 2014 - 06:45 PM
The OP is not super sensitive so let's use some common sense. She is 6 months into the diet and still has a way to go with healing so the necessary thing to do is cook all your own food for awhile because otherwise, you will slip up and make yourself sick. That is normal for everyone and has nothing to do with sensitivity. At 6 months, there should not be continued hits and it will slow down healing. As boring as it sounds, no eating out and especially no risks like ice cream or any fast food. In fact, giving up fast food completely forever will cut out one of the biggest sources of being glutened.
Bummer! My heart really goes out to you that you are in the middle of a reaction.
There are plenty of people here on the celiac forum that take risks that I wouldn't dream of taking, so don't trust that what works for others who have celiac will work for you. For now, I'd categorize yourself as super-sensitive and make decisions accordingly. Though it may seem impossible to avoid cross contamination or accidental glutenings, it can be done. You just end up making a lot of your food from scratch and getting super selective about which brands and products within brands are safe. For instance most Glutino products are made in dedicated facilities, but their crackers are made in a shared facility, so don't even try them. Paying attention to discussions here on the forum is a great way to learn tidbits like that without having to go through the reactions yourself.
You do have to be more selective about what risks you choose to take and forego temptations the rest of the time. For you, it looks as if your day to try new foods is going to be Fridays only. But every time you take a risk, you have to ask yourself if possibly having to give up a weekend is really worth it. 99% of the time, it won't be.
On a positive note, I can tell you that after I managed to stay 100% gluten free for several months without any accidental exposures, my reaction to trace amounts did seem to die down quite a bit. (But the one time I accidentally ate a full dose of gluten, my reaction was different and worse than anything I had experienced before going gluten-free.)
If it makes you feel better, I was still making mistakes on a regular basis up until the fifth or sixth month, despite the fact that I work from home and have a gluten-free kitchen. I might also recommend setting aside specific time for grocery shopping, and not taking the kids with you so that you can focus and not make any mistakes when shopping.
And in your case, I think being a single parent is a good thing because you can make your home a gluten free zone rather than have to share space with another adult who may not be as careful as you need to be.
Glutino products are safe. They are a solid brand. I am very sensitive to tiny amounts of gluten and have tried many of their products, including crackers, with no problems. I have never heard anyone complain about them. Let's not diss a reputable company.
To the OP......maybe you have an issue with dairy? That is common with us (me included) and can give symptoms identical to a gluten hit. I still cannot eat ice cream or gelato unless I stop after a couple of bites.
That's my limit!
Posted by Gemini on 25 June 2014 - 07:27 AM
I've only been here a short time, but two ideologies seem to be prevalent around here. One ideology trusts in empirical, well-researched, current medical thinking. The other takes a more skeptical view of standard medicine and may give more credence to to anecdotal experience (both theirs, and that of others) and to alternative medicine.
I think that in some cases the second group (into which I fall, BTW) may be a bit more skeptical because we have been burned in the past by traditional medicine. Many of the health improvements I've experienced haven't come as a result of traditional medicine, but as a result of anecdotal help I've received from talking to others, searching the web, etc. I realize that this makes me laughable to some, but I've received enough help from listening to others' experiences that I don't care.
When it comes to things like this thread, these two ideologies can wind up clashing. Those who trust labels, etc., trust. And those who don't, don't. All of us are dealing with things the best we can. What I wish is that both groups would one another a little slack. Trying to navigate all this is hard enough already.
I realize I'm generalizing here. Please don't be offended if my categories don't quite fit your situation.
I don't think learning to read a label correctly has anything to do with trust issues. There really is a learning curve with Label Reading 101 and if industry continually screwed it up and had allergens in a food source that was undisclosed, people would be getting sick all the time (and it isn't all about Celiac, either) and that is not happening. Truth is, I am sure it can and does happen but not on the epic scale some people think. There are so many other reasons why people with food allergies and intolerances react to food and it may or may not have anything to do with their individual problem. Most of the mistakes or questions I see here lately are either from learning that still needs to happen or
learning from the wrong sources. The ones that perpetuate urban myths about where gluten is. Because it is there in some places and not hidden because it would have to be declared.
CC is a whole 'nother issue and that's why every food store I have ever been to in my area has disclaimers now about allergy issues and cc. Right up front where it's easy to see. It's up to you, as the consumer, to have a look and see if there is any chance of something cc'ing the food you want, in the case where it sits. Ask questions.
I am not against labeling laws but I also have never had trouble figuring out what was safe for me to eat in any situation. When in doubt, eat something else. If newer labeling makes things easier, fine, but you still are going to have to learn about this diet and use your head to figure things out. I have been doing this for a very long time and it does become second nature and should get tremendously easier. And if the unthinkable happens and you sustain a hit, lesson learned and move on. It won't happen nearly as often the longer you do this.
Posted by Gemini on 18 June 2014 - 07:02 PM
Posted by Gemini on 11 June 2014 - 12:41 PM
Thanks Gemini...I want to hug you. I'm breathing and relaxing.
I'm really bothered that the Dr refused to check my antibodies. It's been 5 months. He said there was no reason to...ever. I've been looking at Dr's...what will my insurance cover, etc.
My faith in Dr's is really shaken and it was years ago. I've had medical issues for so long...so many. When I was in my 20's I was having repeated numbness on my left side...specifically my arm and leg. Months and months of this. Pain, fear, etc. My GP at the time just didn't want to deal with it. She told me at one point that I probably had MS or a brain tumor. Finally she schedules an MRI and what I had was a bleeding lesion on the brain that was causing seizures. This led to brain surgery. I left her practice after that. It just seems like Dr's are fine if you have strep or need medicine...but if something is really wrong...they just don't know.
...and if I were next to you, I would hug you back and give you a cookie!
You said it in a nutshell....your doctor doesn't know squat about Celiac and that is far too common, I am afraid. I was sick for 30 years and ended up down to 94 wobbly pounds and wasting away before I figured it out and requested the blood panel. I had symptoms out the whazoo and every single one of them disappeared over the next 3 years gluten free. As they say, hindsight is 20/20. I still have a lot of trouble trusting doctors and am very cautious about what I let them do or don't do. Yes, that is my problem but when you have been screwed over and nearly died from their mistakes, it shakes you to the core. I understand your feelings totally.
I am so sorry you had to endure what you did and then ended up having brain surgery. Reading all you have written about yourself, I would say you are a screaming Celiac, like the rest of us here. And yes....it can cause brain lesions, that is well documented. I have always said that unless it can be seen on an x-ray, good luck having many doctors find it. The doctor gems are the ones who will ask why you are seemingly falling apart with so many problems and look at you as whole body and not treat each organ/body problem separately.
Get yourself a new doctor and let us know how it all goes. We are on the same team here and really do care. Do not eat gluten...they can still look at your gut to make sure everything is healing well.
Posted by Gemini on 11 June 2014 - 12:27 PM
Really? From what I understood from my (admittedly limited research) and from speaking to several gastroenterologists and dieticians, the biopsy is still the gold standard. The blood results can have false positives, as well negative results when in fact the patient has Coeliac disease. Also aren't there numerous other conditions that can cause the same markers in the blood as celiac disease? There are also certain blood test for celiac disease that aren't recommended becasue they give unreliable results if you have an IgA defficiancy.
Admittedly, if you get positive blood work and going gluten free helps, then chances are you have celiac disease, but saying "you do not need a biopsy for diagnostic purposes" is a bit of a dangerous statement isn't?
Any time you ask a GI doctor, they are going to respond that you need a biopsy for diagnosis. I think part of it is liability driven and the other part money. In some circumstances, a person might need to move on to a biopsy if their blood work was inconclusive and came back as a weak positive and then the biopsy can be used as a back up diagnosis, if you are lucky enough that they hit the right spot and find damage. I believe even a weak positive is indicative of Celiac but as you can see from reading this forum, some folks need more proof to convince them they have it and to stick to a strict gluten-free diet. I can understand that if they aren't that familiar with the disease or the diagnosis criteria. It is not always as clear cut as other diseases.
As far as I know, there are no other diseases that will elevate blood markers except the tTg. That can be elevated from other autoimmune diseases which are commonly seen with Celiac. However, the DGP and EMA will only be positive from Celiac Disease.
All of the IgA related testing in a Celiac panel will not be useful if a person has an IgA deficiency. They could have the IgG related tests done but may choose to have the biopsy if these are elevated because the EMA test is IgA based and that is usually the clincher in a blood panel for Celiac Disease.
Taking all this into account, I stand behind my sytatement that for many people, a biopsy is not required for diagnosis. Even Dr. Fasano, one of the leading researchers and Celiac physicians, has stated the same. Celiac testing is not a one size, fits all kind of thing. The bottom line for me is that if someone shows clear cut benefits from eating gluten free and regains their health, I stand behind them 100%. That is far better than having a negative biopsy and not going gluten free and becoming sicker and sicker.
I know relatives who had this happen and I am watching them suffer all because they believe a doctor unquestioningly.
Posted by Gemini on 10 June 2014 - 11:49 AM
Here is a link to an article that talks about why vintners don't list ingredients. And grapes are often a crop that is doused heavily in pesticides and herbicides so if you react, it might even be to a residue of something toxic left on the grapes themselves
How about buying a good quality wine and drink it and stop worrying about what may or may not be lurking in it, courtesy of all those evil wine makers out to get us?