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
Hi, I just wanted to share with you guys that I have been gluten free for over 2 years now. I finally was able to get a better doctor when I moved to the USA. I told him that I have still been having issues regardless of the change to my diet and medication. We randomly decided to shoot in the dark and test me for Lyme Disease. Turns out I have Lyme Disease!
The reason why I am posting this is because as I researched this I realized that people who had LD were also experincing worse symptoms when they ate gluten, so they went gluten free but they weren't celiac.
It's a bit of a controversial subject in the medical community because no one is sure on how to manage or treat chronic Lyme Disease. Acute, however, is usually easily treated within a month.
I think I may have been affected either 4 years ago or I was infected a decade ago. A certain percentage of people end up with chronic arthritic symptoms, nerve, and brain issues. There's a huge list of symptoms that could and are linked to being infected.
So if you are having issues, you haven't been diagnosed with celiac disease, you are having problems being diagnosed with anything, ask your doctor to run a simple blood test to check for Lyme. Sometimes the blood tests, in the early stages of Lyme come back normal but a chronic case will usually be a positive blood test.
Hope this helps someone out. I have a long road ahead of me now and I don't know if I can or will be cured or if I will be able to eat gluten again. I'm just happy that I have some answers.
So I am wondering if anyone has experienced the symptoms that I have trying to get off of nexium or has managed to get off of this medication or another PPI.
My problem started over 2 years ago when I had horrible acid reflux it burned my tounge to the point where my tounge was red and soft. I'd cough up stomach acid in the middle of the night a lot, my heart would pound like crazy, I'd have heart palpitations. I just felt awful.
No over the counter medication like zantac or tums etc would help. This was before I went completely gluten free so the gluten intolerance could have been causing the severe acid reflux.
Anyway, I didn't think much of taking nexium until I tried to go off of it cold turkey and the withdrawal started. After I ate I'd get really tired, dizzy, it was hard to concentrate, and then the nausea would come on. This wouldn't end, I'd feel hungry but nauseated and food wouldn't stop the nausea.
So I went back on it again because it's hard to deal with these symptoms and function properly in my life.
Now that I don't have many important things to do right now I decided to try again but take half of a dose, half was okay, then a quarter but these symptoms came back again except with a throbbing migraine, extreme nausea, sleepiness, it felt like someone was sitting on my chest. But I had no rebound acid problem like most people describe when trying to get off of PPIs.
I tried adding in DGL licorice, lemon and apple cider as recomended by other people, ginger, cutting back on acidic things or things that would irritate my stomach, but still nothing. So I had to go back to half of a pill again because I couldn't get out of bed or off the couch, within a few hours I was feeling normal aside from being really tired which subsided within a day.
It's really frustrating because the more i read up on these medications the more I want to get off of it but I'm physically addicted to it in some way that I haven't read about anywhere else. If I had known how difficult it would be to get off this medication I would have found something else to take instead.
I discussed this with my gastrointestinal doctor who told me outright that stomach acid isn't needed to digest or absorb nutrients. I couldn't believe what she was saying to me as if she was some kind of quack doctor. So I haven't been back to see her, she told me I could take nexium for the rest of my life.
But there are many studies that show that PPIs can make you succeptible to gastrointestinal infections, cause problems with vitamin uptake, weaken your bones etc. It's just not good to go on them for longer then 6 months.
I tend to not tell my friends about it mostly because they really don't understand and I can't expect them to. It really only comes up if we are eatting together, but even then I go about my gluten free diet as normal regardless of their comments or sighs of disgust.
I rarely tell my friends about my experiences being glutened and really only disscuss this with my partner who believes and has seen me glutened. I learned at a really young age, when I was chronically ill, that people aren't interested in hearing about illnesses all of the time. Try to find support in other parts of your life, like here because we all know what its like, and accept that your friends will never get it. Hopefully they will tolerate it rather then torment you about your choices.
Honestly, I take the time with my friends, who don't understand my illness, as a chance to disconnect from the way I am feeling or my bad health experiences. It gives me the time to forget about it and focus on other aspects of my life.
I had this problem for months before I stopped eatting gluten. I went to the hospital and had 147beats per minute, the nurse said it was because I was worked up but I wasn't. It happened a lot after I ate for no apparent reason. It would take hours for it to calm down and would sometimes cause me to be sick. It also came with a lot of acid reflux, when I was put on nexium, it calmed down. It didn't completely stop until I went on a gluten-free diet.
I didn't suggest benzos in my previous post as a cure all pill. I should say with my expereince of using them I did not use them on a regular basis because they are highly addictive. I only used them when the anxiety was severe, they are something to be taken on a case to case basis and not as a long term medication. They aren't a preventative long term solution to anxiety or depression but if you have suffered from severe anxiety attacks, the resulting limitation of the attack that a benzo has is very reliving.
The withdrawls are minimumal when they are used this way, if you do happen to suffer withdrawl symptoms from one or two doses at a time. Not only that, the half life of some is quite long for such a medication and the effects can be felt for days afterwards. I can imagine how horrible it would be to take this medication everyday without researching how it works. The more you use benzos, the more you build up a tolerance for it and the higher your chance of becoming addicted.
In any case, if you can find other ways that don't involve medications then you are better off unless you find a doctor that is willing to do their research to help you find something that suits you very well. It can be a difficult task when they are confident and pushing of one medication that obviously isn't providing you and relief.
I still choose to opt out of medication because of this reason and try to resolve my anxiety through therapy, diet, etc.
I constantly have a bad taste in my mouth and I can't relive it with anything. Brushing my teeth helps but only for so long. I am pretty sure it is from acid reflux. When it's really bad I get the patches on my tounge that are like geographical tounge. Any suggestions on how to keep this bad taste to a minimum or how to stop it from happening? Anyone else get this?
I've dealt with anxiety and depression for much of my life and I can say in my case that medication hasn't helped but only caused further problems especially with Selective serotonin re-uptake inhibitors (SSRI's) and SNRIs. A lot of medications have really bad withdrawal symptoms and it can be very had to get off these medications, brain shivers are probably the worst feeling. In the case of taking medication for depression an anxiety, it only really covers up the symptoms rather than getting to the root of the problem.
I find the only medication that has helped me from time to time are benzodiazepines but they are addictive to many people, can be easily overdosed, and many doctors refuse to prescribe them. They also help very well with interstitial cystitis, often taking half a normal dose can result in immediate relief for weeks afterwards as well as a heightened mood. But again, Benzo's are something that you cannot mess around with, they interact with just about any medication and the potential for a lethal accidental dose is high.
I have found that seeking out professional help has provided me with a better stepping stone to understanding why I feel the way I do. But also taking steps in changing my diet and adding in supplements where I need them. Low iron causes me to have severe panic attacks for example. Reducing the amount of caffeine in my diet has also alleviated some of my anxiety.
I cope by trying to prevent myself from sitting down and thinking bad or morbid thoughts. I try and keep myself occupied and force myself as hard as it may be sometime to just do something. If you allow yourself to sit and think, it gets overwhelming.
I find that valerian root can do wonders for anxiety but you can't take it all the time because it looses it's ability to calm you down. I never had success with st.johns wort but some people have luck. Again, these will interact with other medications so you have to really do your reading and be careful.
If it really comes down to requiring medication for anxiety and depression its best to really find a professional because there are many many medications and if you are on the wrong one it can spell disaster. I was on Effexor (SSRI) and it increased my morbidity emotions in my head but they lacked any real emotion. IN all honesty, I could have killed myself without even knowing what I was doing. It can be scary to discover this so I caution you when it comes to medication, they can do the opposite of what they are supposed to do.
I find that having a pet or an animal in my life alleviates anxiety and depression but it really all depends on if you are an animal person or not.
Finding what triggers my anxiety also helps too, for example a certain situation might cause me a lot of anxiety. I try to deal with things as best as I can but I have to remind myself that it is okay to remove myself from these situations if it becomes too much. I've had to force myself to be more positive throughout my life and to just accept life as it is. I can't plan for everything and stuff just happens so I have to accept it rather then worry about it all the time. There is no way I can control everything that's going to happen in my future so the best thing to do is to put on your seat belt and prepare the best you can but accept that what happens , happens.
I was diagnosed with IC in Feb of this year and it was kind of a stepping stone to controlling my problems. I still have issues though. I take prelief wit meals, trying glucosamine and marshmallow root. my symptoms get worse if I drink something acidic or if I am close to my period. Sometimes I have to wake up over 5 times in the middle of the night. It's frustrating. I went through the instillations but I didn't make it to the final one due to the fact that the specialist was going on holidays for 2 weeks and they could not be performed without him being present in the hospital. All of my symptoms came back and I just couldn't be bothered to drive the hour and wait 3 hours at the hospital for another 6 weeks. So it was a waste of time for the 4 weeks I had them. I've heard of people being able to do them themselves at home.
In my experience, once I started the gluten free diet and I ended up accidently getting into gluten a year after, the reaction was way worse than before. I understand how hard it is to be able to go to some ones house and pick through stuff/ask around. Sometime people are really accommodating other times they aren't. For example, if you are going to a family dinner and there's turkey, ask if it could be cooked unstuffed instead etc. It's hard to change peoples traditional cooking so being gluten free has made me the host more often for dinners so I know that things are gluten free and nothing will be contaminated.
Otherwise I just stick to what I know at parties/dinners. I wont be able to eat as much as most people but I will pick what I know is safe to eat. Some people won't do that because their reaction is incredibly severe But I don't think it would be a good idea to dive in and eat, there are always options. If you eat gluten from time to time , you are just setting the clock back and your healing will be delayed over and over Even if you have to bring your own food, if people are upset about it, they get over it. You have to explain to them over and over that it's a disease and not a fad diet choice. If they choose not to believe you or whatever then they are obviously not the best people to have around. Friends and family should always support one another when it comes to being healthy and getting better especially if their illness is chronic and diet is the only way to control the symptoms.
It may seem like it's a lot of work in the beginning but most people notice after a week or two that their symptoms improve. Sometimes it can even be within days, some symptoms will improve. I noticed after a week when I first started the diet that my stool was better, I didn't have a lot of abdominal pain and I was less nauseated.
Defiantly get the test done before you start the diet especially if you are being tested through blood. I've read that people have gone on the diet then have had to go back to gluten which made them really sick again to result in a negative blood test. You can still be sensitive to gluten and not have celiac, sensitivity can range from mild to severe. Sometimes people are just allergic to certain grains like wheat. It's really all about removing things one after another. I removed wheat from my diet first with no change in symptoms to completely removing gluten from my diet and then corn
What's nice about bulk barn is that they keep all of their gluten-free flours separate from their regular flours and they sell tons of gluten-free items there too. So they are aware of the seriousness of contamination to celiacs. I haven't ever had any problems with their flours and I use them on a regular basis when I am at home. I'll have to check out amazon.com. I use a lot of Sorghum, brown and white rice flour. Never used almond flour before? Are there any books you would suggest for baking with almond flour?
I'll be moving to Phoenix so there might be some good options here but I am not sure.
Thank you for the suggestions! I'll start ordering stuff instead of buying it at the grocery store once we get a real address here
I'm sorry to hear that your family isn't supporting your decision to go gluten free. My family was the same when I first went gluten free and would get super pissed off at me when I'd make my own meals and not eat theirs. Or make my own pasta and eat the sauce or something. My grandmother still gets really pissed off at me when I wont eat what she offers me because she doesn't understand how sick it would make me to eat it.
It's not fair of your family to not support your choice to get better and it can be very stressing on relationships because eating food is a big deal. It's your choice to do as you please but it does help to have some kind of support which is good that you have it from your roommate.
You shouldn't feel pressured into eating gluten in meals just because it makes others feels better. I found this hard in the beginning because people really do go into a rage fit sometimes when you don't take what they offer you or you don't eat when they are eating at restaurants. You can get around the gluten thing at restaurants by discussing this with the waiter or waitress. If it's not a mom and pop country kitchen place, you can get away with finding something that doesn't have any gluten in it. I had an omelette at the cheese factory and they also had a gluten free cheese cake. Often restaurants have different menus or they have a list of meals that don't have gluten in them, applebees does and has some really good meals too. It can be scary and uncomfortable at first but people will accommodate celiacs/gluten intolerances more than you think.
But shame on your family for being such jerks about it. I would try and talk to them about it and tell them that it's your choice and you will do whatever works for you and you hope they will see that and support you towards better health. You can still be gluten intolerant and not have celiac.
So in Canada we have a store called bulk barn and it's amazing for gluten-free flours. It's really cheap too. I'm moving to the USA soon and I've visited there many times but I haven't found any store yet that actually has bulk gluten-free flours to sell. Does anyone know of a store that I can order from or somewhere that sells bulk flour?
I doubt I can bring over any over the border, that's probably a big no no?