Macbre

Yes, yes & yes.....that was one of my first symptoms that led me to the Dr. and then to a cardiologist. I was diagnosed with Veso Vegal Syncope about 6 months prior to being diagnosed with Celiac. Even now, I experience more heart related issues than GI issues when I get CC. I would lay on the couch at night and feel like my heart rate was dropping so low that I would feel like I was going to pass out. I would then have D for several hours and the next day I would be completely wiped out. It has definitly improved since being gluten-free for a year, but every time I get contaminated it comes back with a vengence. I also have "POTS" so that gets worse also.....I'm hoping it will all go away with time/healing.

You are not alone....Good Luck!

For 2 years after giving birth via csection I have been sick to my stomach on and off for 2 years. I was diagnosed with Crohns disease and today after tons of tests and biopsies the dr has confirmed I also have Celiac. I dont know where to start and I feel like my world is ending now that I cannot have gluten. My favorite foods are cheesesteaks, pizza, french fries with gravy, chinese food, etc. Now that I cant have them, I dont know how I will go on. Food is everything to me. I am very passionate about food. I just want to scream and am now envious of everybody in my household that can eat what they want. I am angry and need help dealing with this!!

I know you are frustrated....I think we've all been there at one point or another after being diagnosed. You will find that you will still be able to have most anything you want. You will just have to use gluten free products and I have to say that most of them are just as good if not better. I make the bobs red mill gluten free pizza mix and bake it on a pizza stone (after I initially bake it on a pan to get it firm) and my kids and husband like it better than theirs with gluten. I also found that I can make just about any cake recipe with gluten-free plain flour & it comes out wonderful.

Hang in there & try to stay positive.....

I have anxiety too. Right now I'm on Klonopin for it. Eventually I would like to ween off after being gluten free for awhile.

Is Klonopin the same as "colozapan" (not sure of spelling)? The reason I ask this is because my mother was on Colozapan for anxiety and she was recently diagnosed with early dementia, but it was being caused by her anxiety med. She was taken off gradually about 2 mths ago and she is back to normal again. Just wanted to give you an fyi just in case it was the same. That is a very strong medicine.

Hello all.

I've been diagnosed with Celiacs Disease, not sure that is the correct terminology though. The diagnosis was about 30 days ago with a blood test, and I will have an edoscopy in the next week or so. So the question I have is this. I have been diligent with my diet and started to feel better and stronger immediately. My sleep improved, depression lessened and as I stated I almost immediately started to feel stronger and honestly about 5 years younger. Now for the bad news. The flu swept through our home about a week ago. When I first had a sysmptom I assumed I had been glutened. When my son started throwing up and subsquently his sisters, I knew that the flu had arrived. After about 6 days of flu related diareha I had about 2 days when I felt fine again. I thought OK I rallied and I'll be fine again shortly. The weird thing is that I have not felt well. I had the 2 days of reprieve and then the diareha started again and has been with me for 3-4 days. I finally gave up and took an Amodium AD and it helped, but I fear it is just masking the symptoms. Is this normal?

In the past 5-6 years I have never had the flu or even a difficult cold. I'm healthy other than Celiacs and hereditary heart disease. Ironically I always ate really well and had plenty of whole grains in my diet. I guess I just had the wrong ones.

One thing you need to consider about the endoscopy is that it may not be accurate since you have been 30 days gluten free. I chose not to have the endoscopy because my doctor told me to stop eating gluten immediatly when the blood test came back positive and they had me scheduled for the endoscopy for 3 weeks later, but after talking with "veteran celiacs" I was told numerous times that the results might not be accurate since I had already started healing. Just keep this in mind.

Regarding your flu symptoms lingering....that is not unusual. When I first went gluten free (11 months ago) I had days when I would feel great and other days I felt like nothing had improved. It's a rollercoaster ride in the beginning. You might still be getting gluten and not even realize it. I was getting it from my mouthwash and body lotion. It's trial and error in the beginning. I'm just now starting to have more good days then bad....there is light at the end of the tunnel, but you have to be very strict in avoiding all gluten produts.

Please, I'm in need of some advice...

I am dealing with constant pain underneath/behind my ribcage.

It simply will not go away - even though I am careful in regards to diet and personal hygiene items.

The pain is typically localized to my right side. It is present 90 per cent of the time. It is best described as dull & achy. It's like a really bad toothache in my upper gut.

This is why my initial endoscopy was done (back in February). Biopsy revealed total villus

atrophy & I've been gluten free ever since.

My doctor said oh well, can't do anything about it. This makes me sad - I fear I'm not healing at all - and yet... blood tests show high B12 (1481), real high Folate, and normal D levels. As of June or so, my 'thyroid function' was within normal limits... just don't know why I still have this chronic pain in my side. I'm frustrated.

I will be getting a second opinion next month. Any ideas as to what sorts of tests - if any - I could ask for? Any ideas at all?

Thanks for reading, and for any & all input!

P.S.: I've posted about this in the past so I apologize for being repeating myself -

guess I'm just desperate for some more enlightenment. Can't get anywhere with my GI or regular doctor...

Thanks again,

Pondy

When I got diagnosed that was my main complaint. I didn't have any GI issues, it was a constant pain under my left ribcage. It did get better once I went gluten free, but it does come back when I get glutened. I do have heart palpations and chest pain on a regular basis, but I have POTS (postural ortostatic cardio syndrome)and it does get worse with glutening. Your pain should go away with time, but I've been gluten free for almost a year now and my ribcage pain disappeared after about 3 months. Maybe you are still getting gluten and don't realize it. I was getting glutened by my toothpaste and mouthwash and didn't realize it. You might want to look into your personal hygiene products to find out if you are being accidently glutened still. I hope it gets better for you....I know the pain you are dealing with. It used to wake me up in the middle of the night because it would be so bad. Good luck!

I know this is a personal/disgusting question.....does anyone else experience rectal spasms after being glutened? I have had them several times, but I didn't relate it to glutening until last night. I got sick after Thanksgiving dinner and during the night I woke up with the worst rectal spasms. It lasted for 2 hours this time. I was wondering if this is just a coincidence or if it has to due with glutening. The pain is so bad that is makes me nauseaus. Anyone else experience this???

Mine was great! My parents made a gluten free turkey, got Honeybaked ham, sweet potatoes, salad, cranberry ambrosia and mashed potatoes (both gluten free). I brought my own gravy, green beans and pumpkin pie. I also brought dips and chips and put my son and mine in separate containers so they couldn't get CC'd.

I make the Libby's recipe and just don't put crust. I spray oil the pie pan and pour the filling right in. It comes out great, holds together well and I think it tastes better because you get the full pumpkin pie taste. And it's WAY less calories than one with crust.

I was careful for my son and myself. Kept our food in a cooler until it was time to eat and then guarded it carefully so nobody touched it or CC'd it.

I didn't get glutened and we had a nice time. I didn't have time to make stuffing so I will make it this week with pork chops or something becuase I do love it and missed it today.

I thought I was doing everything right by making my own food to take to my Mother-in-laws, but I ended up sick anyway. I'm thinking now maybe it was the sweetpotatoes or the carrot cake that I made. I'm not sure what would have had gluten in it, but my best guess would be the sweet potatoes. Does anyone know if Bruce's brand sweet potatoes in syrup are gluten free? I couldn't find anything about it. I assumed they were, but that's the only thing I can figure that made me sick because I have made the carrot cake in the past. It was horrible....headache started soon after dinner then the rest came at 1am. I'm so frustrated!

It's really starting to hit me I will never be allowed to have certain things. Going out with my friends is no longer fun I dont like wine or beer and can never find potato vodka at restaurants office parties are always terrible and there are never foods I can eat. I can't have my fried Mac and cheese from cheesecake anymore. This is very depressing I feel left out from the world and no seems to care. I also just found that I have a heart condition and must limit my salt which is what makes most gluten free processed foods tolerable. Any ideas so I can get myself out of this funk?

I know how you feel....it is hard adjusting to the fact that others can eat anything they want and you have to read a label before you even think about touching it. It does become depressing. My husband does most of the cooking in our home...and granted he has been wonderful....but I do get upset when he wants to try something new and he finds out I can't have it then I feel so guilty. I did find one "chocolate pleasure" I can still have.....Cheescake Factory Godiva Chocolate Cheesecake. I always ask them to cut me a piece with a clean knife and I usually have them cut if from a fresh cake....so far so good and I am very sensitive. Hopefully you have a Cheesecake Factory in your area and can try it for yourself.

Hang in there....it does get easier to deal with. I think it takes a couple of times of getting really, really sick and then you don't really care what others eat because you see it as poison!

Just out of curiosity....what are your heart problems? The reason I ask is because I have heart related issues that seem to get worse when I'm glutened. I haven't found too many people with the same problems.

hello. I am gluten free over 9 months now. My acid reflux went almost completely away and then it came back. it is now at levels just as bad as pre-gluten free and sometimes worse. I do not know how to treat it. I only have insurance that is catastrophic (emergency room and hospitalisation only) so I cannot afford doctor's visits or any medical testing.

I do not eat, and haven't eaten for weeks/months:

- anything citrus

- anything tomato

- anything peppermint (I even use fennel toothpaste)

- anything chocolate

- anything spicy (the only spice I use is sea salt)

- anything with caffeine

- anything with alcohol

and of course I haven't eaten gluten since diagnosis, soy since I discovered my symptoms after it, or dairy since about a month ago I ate a litre of ice cream and felt kinda drunk.

I am also, right now, testing for fructose malabsorption, so I am sugar free, and testing for nightshades intolerance, so none of those either. I have stopped all supplements in case "gluten free" isn't really gluten free. I do not eat processed foods except for rice cakes now and again or buckwheat crackers. (I've been grain free off and on in the past few months and never noticed a difference.)

Recently I've been eating boiled meat or eggs for breakfast (sometimes bacon, but I pat-dry all the oil off it), 100 grams of cashews for lunch, and then a nut or seed butter with rice cakes for dinner. I'm afraid of fruits and veggies because of salicylates and fructose and all those scary-sounding words.

I know reflux sufferers shouldn't eat much fatty foods, but I can only eat a certain amount of food in a day, and if I don't eat something calorie-dense like nuts, seeds, meats, and eggs, then I will starve. I can only fit so much rice, potatoes, and veg in my stomach. In one day I can only have about 3 small bowls of food (and a few cups of tea or other beverage) without hurting myself. Pre-coeliac I lived on ensure and lost 15 lbs in two weeks. of course now ensure and all like products are out because of soy and milk in them.

My reflux continues to worsen. I have tried apple cider vinegar, no dice. I tried baking soda dissolved in water but it made me gassy and nauseated. I am currently on a two-week course of OTC pantoprazole (ppi--under name of "pantup relief"), but after about four days of it I feel no relief whatsoever. I have tried throat teas with things like licorice, ginger, marshmallow root, etc., and they don't help, or barely help. I've tried candied ginger and ginger soda with real ginger in it, but no dice. I can't really stomach ginger tea. I have had a lot of fennel tea tho for gas but my current diet seems to be slowly decreasing the gas--we'll see.

I've tried digestive enzymes and they seem to help, but the ones I currently have use potato maltodextrin so I stopped them for a while. also, all the digestive enzymes available here have peppermint oil in them, but I tho't those with reflux shouldn't have peppermint?

right now I bought powdered slippery elm and made a tea out of it and drank it. hopefully that will work for the symptoms. but what about the cause?

I was diagnosed with a small hiatal hernia, but I've never responded to ppis or acid medicines. I was on nexium for a long time and something even more powerful for a while as well, and I also tried some other kind of ppi, but none of them worked. I was given carafate once and that worked better, allowing me to eat solid foods again, but I was not symptom- or pain-free by any means.

I can't take pepto or similar because I will burp it up again, and the taste will make me want to vomit all day.

i am so scared that I need surgery or some invasive testing but I can't get full insurance again until next August. And I don't want to leave Ireland before my year is over! I am supposed to be enjoying myself. I thought that coming over to ireland, a very coeliac-friendly country, and living in a flat by myself where I control my kitchen, then going on an elimination diet, would help. I've tried several elimination diets and just get sicker and sicker. There is no diet that can test for anything and whenever I'm on one I have all these doubts about what I am eating and what causes what. my symptoms and food diary tells me nothing.

I used to struggle with self-harm and I have to admit that I just banged my head against the wall so hard that I saw spots. I am struggling very hard against the temptation to start cutting again (I haven't cut for over two years). I like to cut because it is a pain that I can control. but I know that I will be covered in scars in no time and I will still have reflux, so there's no point in it. also, I always want to puke when my reflux gets so bad, and the only thing saving me from bulimia is my lack of a gag reflex (I can stick my finger as far down my throat as possible and will not gag on it).

doesn't even begin to explain it

Nuts and seeds (trail mix) cause me more acid reflux then any other food. You might want to lay off those for a few days & see if that is the problem.

I think I'll just make my kids start fixing their own food!! They have to learn sometime....right?

I've always made homemade pizza for my kids.....bread maker & then I roll out the dough and put it in the pan. The past few times I've made it I noticed that I was sick that night and figured it was something I ate, but tonight I noticed that once I touched the flour I started itching on my arms and them my face. I'm wondering why this affects me, but touching their bread and crackers doesn't. Am I going to get to the point that I can't touch anything with Gluten at all? Has this happened to anyone else. This is getting ridiculous!!

I was just wondering if anyone else has both Celiac's and POTS (Postural orthostatic tachycardia syndrome)......I don't think they are related. It seems you can get POTS from a viral infection, which I had approx 3 years ago, but I was wondering if anyone else has it. I'm just curious to know is if you have both if the symptoms are worse when you get glutened. When I get glutened my symptoms are mainly heart related. Does anyone else have this?

Thank you all for your replies. They really help. It isn't about laying down because it would happen no matter what I did. I would eat at work and have trouble for the next couple of hours. Even when drinking something. It is getting better. I will make sure to eat easier foods to digest when this happens. It would be really nice if the reactions would stay the same from glutening to glutening as if it comes without the D sometimes it takes me a while to figure out what is going on.

I would highly recommend pro-biotics. I had terrible hearburn/indigestion before I was diganosed,and I started the Natren pro-biotics and now they help when I've been crossed contaminated. I don't go a day without them.

I was just curious to see if everyone has had the biopsy to determine they indeed have Celiac. My blood work just came back positive and now I am waiting to see if doctor wants to do the biopsy...I just want to know if that is necessary???

I didn't have the endo or colonoscopy because my doctor wanted to schedule it 4 weeks after he had me go gluten free. I had read that the test could be negative if you didn't have it done right away and after a week of going gluten free I was feeling so much better that I decided not to have it done. It didn't help that I was going to have to pay out of pocket for it because I'm not at the age that my insurance covers it. I'm just hoping that I made the right decision because I'm not willing to start eating gluten again just to have the test done.

I am wondering if anyone knows why the reaction to gluten lingers for a while. First the gas and stomach issues, mucus,D, joint pain, anxiety...etc....then I get a massive headache then C then finally cold sores all over my face. This all takes about 2 weeks and then I am good to go until the next time and it all repeats. Just wondering why it all is so drawn out?

Thanks!

I don't know why it last so long either, but I did try something different the last time I was accidently glutened. Even though I felt horrible and had absolutely no energy and my joints ached...I made myself exercise....I have to say that I sweated more than usual but I felt better afterwards and my symptoms didn't last as long. I guess sweating is kind of like a detox for your body. I know most people will think there is NO WAY they can exercise when they feel so bad, but I think it helps. I didn't leave the house because I knew I couldn't get too far from the bathroom, so I popped a workout disk in and and suffered through it. I told my husband that no matter how sick I get in the future with accidental glutenings that I want him to encourage me to exercise because it definitly made a difference.

Since I've been gluten free for 10 months I find that when I get glutened now my symptoms are worse than they were....guess I'm becoming more sensitive. My major sysmptoms (that last anywhere from 1 week to 3 weeks) are:

Diarrhea

Heart Palpations (major symptom)

anxiety

hives

brain fog

moodiness

ears ringing (I know it's strange)

achy joints (feels like the flu)

restless legs

headaches

tiredness

Vasovegal Syncope (almost passing out)

Shortness of breath

Pain in left rib area

and others that I can't think of right now.....It's definitly enough that I don't like to eat out and I refuse to eat at other peoples house (I don't care how careful they try to be).

Out of all these symptoms the one that bothers me the most is the heart related ones. It doesn't seem that too many people deal with heart probs so I don't know why I have that as a symptom. My heart rate is so irratic that sometimes I feel I am just going to pass out because it will drop suddenly. It usually takes several weeks to get it back to normal. I'M SO OVER ALL OF THIS!!

I know this question has probably been answered a dozen times, but I didn't have the patience to look thru the topics....I got glutened over the weekend (still don't know what I ate). I always seem to have the GI issues @ first then a few days later have the anxiety, mood swings, joint pain and then I get the chest pains w/palpations (still dealing with all of these). My glutening has always caused stabbing pains in my ribs, could this be what causes the chest pains? I've been checked for heart probs (everything okay), but it is still scary. I would feel better knowing that others have experienced this and that it's not unsual. My cardiologist explained it to me, but I still don't understand why it happens (to much medical lingo). Does anyone else have heart related probs with gluten?

I don't wish this disease on anyone I have done so good and now it feels like I have had a MAJOR set back. I'm sick of feeling anxious when I have nothing to be anxious about. Sorry for rambling.....I'm just venting!

Thanks for any help!

Does anyone know if Sweet Baby Ray's Honey Chipotle Barbecue Sauce is gluten free? I thought it was when I bought it, but now I can't find any information on their website and since it's the weekend I can't contact them. I ate it on chicken last night and this morning I have all the symptoms of being glutened. I was doing so good....haven't been glutened in months.....what a set back.

Thanks for any info!

Happy 4th to everyone!!

I had a Mojito about an hour ago and I'm noticing I'm feeling very anxious. I tried to find out if the Myers white rum was gluten free, but I couldn't find a definite answer. I thought since it was clear in color that it was okay, but I'm thinking now that maybe I was wrong. Does anyone know??

I am so frustrated and confused.... I have been gluten free since Dec. of this year and now I'm developing other food allergies, (ex. shellfish, spinach, almond milk, but not almonds). I also had a reaction similar to an asthma attack last night about 3 hours after I cut my grass. I was lying down watching TV and I started coughing because my throat felt scratchy and then my chest started feeling tight. Soon after my throat got tight and I felt like I couldn't swallow. I immediately got up and took Benadryl. Then my stomach got upset. My husband thinks it was an anxiety attack, but I wasn't anxious about anything, I was relaxing. Is this normal? I'm waiting for an appt. with an allergist, but in the meantime I'm finding myself taking Benadryl to relieve the symptoms. I did get glutened recently and I do notice a change in my breathing when I get glutened, but it usually takes about 24-48hrs for my symptoms to appear. I have gone from just getting hives when I eat spinach or shellfish to now having an itchy throat with hives in my throat.

I have never had asthma or had to be concerned about food allergies. Why all of the sudden am I developing this? I would think it would get better as you heal. I don't have the pain that I used to have under my ribs so I know my intestines are healing.

My diet is already restricted enough and now I have to restrict it more. This is getting frustrating. Has anyone else had these issues?

I buy the Enjoy Life products. They don't contain any soy. They taste really good too!

Thank you for an awesome reply. I truly appreciate it.

I really thought Doritos had Gluten, my sister tried telling me they didn't. Her 4 y/o has celiac and she's letting her eat Doritos.

She claims their website states they are gluten-free. I couldn't find it online.

Thanks for clearing it up. I know several of the variety' clearly state they contain wheat.

Thought I should share this info with all of you:

MY ONLY GROCERY STORES are: KROGER, IGA, WALMART SUPERCENTER.

Not much variety, ha ha!

I can't imagine being in your situation with only a few stores to choose from with such a small selection. There is a website called www.buythecase.net. They sell many items by the case and I looked to see it they had any of the gluten free items that I buy. They sell a variety of Amy's and Bob's Red Mill, but I didn't see any Pamela products. It is more expensive upfront, but if you don't have much selection at your store it may be beneficial. I know my Walmart Supercenter has a good selection of gluten free products so if you go online you may be able to order them and have them shipped to your store so you don't have to pay shipping.

Pamela's does have several types of products that I absolutely love. I buy the cookies, my favorite are the shortbread cookies (yum), but I have tried other products by them and they are delicious. As far a the pizza, I couldn't bring myself to pay the prices they wanted for the pre-made crust so I started using the Bob's Red Mill and to be honest with you it has an authentic pizza texture and makes 2 crust so I make one up and store the other in the fridge for a few days. I even take it for lunch and eat it cold.(My kids even like it) I did add garlic salt and italian seasoning to the mix just for the extra flavor. As far as my favorite bread - I found the Canyon Bakehouse to be the best. I like Rudi's okay, but Cayon Bakehouse taste more like bread and it doesn't have to be toasted to taste good. I can make sandwiches and pack them in my lunch and they taste wonderful. I don't eat any of the frozen entree's so I can't help you there. As far as chips are concerned, I buy kettle chips. You should be able to find those at Walmart.

I hope some of this helps!! Good luck

I know what you are going through. My main complaint when I was diagnosed was constipation. The dr. had me on Miralax, but it didn't always do the trick until 3-5 days later. I was miserable by then. My gynecologist told me about Magnesium. I now take 400mg 2x/day along with my probiotic, and I am much more regular.

Since I'm new to this I have a question..... I have taken gluten completely out of my diet and I feel 90% better, but sometimes I get major D after I've eaten something that I know doesn't contain gluten so I'm thinking maybe I have an allergy to soy/soy lecithin. If I continue to eat those foods containing soy & I do have an allergy to it, will it still do damage to my intestines like if I'm eating gluten?

I can deal with a little upset stomach, but I don't won't to continue to do damage if that's what it is doing.

Yes I did have to wear the halter monitor. I wore it once for the 24 hrs & then another time for 21 days (what a pain). I did not have a single episode during those times, but I was only eating enough food to survive because I couldn't digest it. And it was during the winter months so I didn't have the heat to trigger an episode. This was all prior to my being diagnosed. It's not as bad now as it used to be, but I'm afraid with the heat this summer that I'll start experiencing them again more frequently. I took my kids to the pool today, and within 5 mins in the heat my heart was beating faster/stronger & I had to take off for the bathroom because it triggers D. Maybe I'll move to Alaska!