Need Help

[TTNOGluten]

I am new to be diagnosed with celiac disease, first by my local gastro, following weeks of abdominal bloating, burning, belching and a lump in my throat sensation, underwent and EGD and labs, but was frustrated and eventually had a consult at Mayo clinic. Another EGD and more labs lead to same diagnosis of celiac. Despite trying to to adhere rigidly to the diet prior to Mayo visit I felt aweful, weak, bloating, back pain, belching and this persistent lump in throat. After Mayo visit, doctor said I was still likely getting gluten in my diet? I am a fanatic about it now and have been struggling through this day to day, praying I will feel better. My symptoms now mostly consist of constant cramping, throught my belly, sometimes they worsen regardless of what I eat, I ache in my back and have episodes of extreme fatigue and some notable depression about this turning my life upside down, and it seems no matter what I do I do not feel any better. I am now just eating rice, gluten free broth, and water. Not sure how long if ever this will take to get better as it has already been a couple of weeks. Desperate for some help and answers.

[mbrookes]

You are not eating enough, for one thing. Shop the perimeter of the grocery store. There you will find fresh (unprocessed) fruit, vegetables and meats. Eat a varity of colors. That will give a varity of nutrients. Prepare them simply, without sauces or strong spices. You might want to stay away from dairy for a while to give your intestines time to heal.

Celiac is a rough disease to deal with at first. The depression will lift as you realize that the gluten free diet will allow a wide variety of really tasty foods. If, after a few weeks of gluten free diet of unprocessed fruit, vegetables and meat, you don't see any improvement, return to your doctor. You will need to rule out any furthur complications. I bet you will begin to feel much better soon.

Stay with us on this forum. The support here will get you through the hardest times. The people on this forum, for the most part, are caring experienced people who are living full happy lives.

[TTNOGluten]

thanks for words of uncouragement, often feels like I am on an island with this disease and that few others understand the severity of the symptoms, fortunately along with my original evaluation, I did have a host of other studies completed, cat scan of abdomen, multiple labs and even stool studies, all of which otherwise looked OK much to my dismay, I figured feeling this bad nearly everything would be amiss. Thankfully I have a good support network of family and freinds, but it is sure helpful to here what everyone else has experienced, to make me feel like I am not alone. I will certainly stay tuned to this web page for any and all advice, as I am sure I have alot of learning to do

You are not eating enough, for one thing. Shop the perimeter of the grocery store. There you will find fresh (unprocessed) fruit, vegetables and meats. Eat a varity of colors. That will give a varity of nutrients. Prepare them simply, without sauces or strong spices. You might want to stay away from dairy for a while to give your intestines time to heal.

Celiac is a rough disease to deal with at first. The depression will lift as you realize that the gluten free diet will allow a wide variety of really tasty foods. If, after a few weeks of gluten free diet of unprocessed fruit, vegetables and meat, you don't see any improvement, return to your doctor. You will need to rule out any furthur complications. I bet you will begin to feel much better soon.

Stay with us on this forum. The support here will get you through the hardest times. The people on this forum, for the most part, are caring experienced people who are living full happy lives.

[cougie23]

Hi there ,

Welcome to the forum...you are so in the right place! I'm pretty new myself but have learned SO much in the last 2 months!You need to read as much as you can on this site! Its really important...you will learn so much about this thing! there are so many different reactions and symptoms! you may even find things you've been suffering from and didn't even realize were conected with this. Ask as many questions as you need...look at the other posts...there is soooo much advice and comaradery...understanding! you are not alone in this...everyone has a story and everyone shares there experiances....a lot of people and Doctors just don't understand and its easy for them to just wash there hands of this and desmiss this as all in our head...or worse give a wrong diagnoses..(I thought I had MS, Fibomialgia..you name it).

But being diagnosed is just the begining..it takes time to get clean...and remember you are probably malnoutrishoned as well...lack of vitenins(It doesn't matter how many you take if you aren't digesting them)will cause so many problem in themselves...thats why DIET and KNOWLAGE is sooo important to you right now...you just need Time!

Hopefully the others will answer soon they have alot more experiance...but keep reading...google any thing questionable...i.e:does toothpaste have gluten in it...(the answer is yes...some do/some don't) some shampoos have gluten..deoderent, instant coffee..you name it...look at the different lists of gluten free/gluten things to look out for on Celliac.com home site (seperate from the forum but you can axcess from there.

google HIDDEN GLUTEN INGREDEIANTS...its used as a filler and a binder...there are WORDS you need to look for on labels BESIDES wheat!Gluten is insidious stuff!You need better noutrishion...you'll be able to eat more soon...your body will be really out of whack at first...we all went through it..just hang in there and learn what the others have been through..learn from there experiances...it will get better! also alot of people tend to be sensitive to OTHER foods as well...it takes time and trial to get your diet right for you...but right now...I'm sure nothing seems to set...read about how the others dealt with this..and just hang in there! (google any questions literaly...and when all the options come up..look for the celiac.com its the easiest way to find the thread your looking for...I noticed even if you post on an old thread..it becomes avalible to comment on and becomes active again!)

See ya around!

also, to keep track of any posts or to go to your profile ...click on your pictue/box on the top right of the page, a drop down will give you options like my content..(what you've posted or responded to)...or my profile..have fun with it.

[TTNOGluten]

Thanks for the support Cougie, try as I may I am sure that I will screw a few things up, I have heard a number folks say that it does take some time to start feeling normal again, and when days turn into weeks, it sure gets very frustrating waiting for the cramping to settle down. I hope I can get to the point when I feel well again, it sure seems like the symptoms vary so much from person to person, I am glad to be stuck with very little diarrhea, but think sometimes would rather trade that for the constant belly pain and cramps--Yuck

thanks again

[notme]

it takes ALOT of time, in many cases. i was just back to my GI a week and a half ago (been gluten-free for over a year) and i am complaining of being soooo tired, thinking maybe there is something else going on. but all my vitamin levels were good and she did thyroid test, etc, all normal. she said i have 25 years worth of damage and my body is most likely tired from healing. the upside is that, unless i really screw up, i am back to eating pretty normal as long as i don't overdo it, my digestion continues to improve. i can eat pretty much anything that doesn't contain gluten. so, hang in there. depending on how much damage you are dealing with/how long you have gone undiagnosed will determine how quickly you feel better/get your energy back. i am still having to limit my schedule to make sure i don't get wiped out. good luck. you are in the right place

[GlutenDude]

Welcome and I'm sorry you have to be here. If I can give one word of advice it would be "patience". It took me two years after my diagnosis to fully feel normal. And three years later, it's still a hit or miss journey. Give your insides time to heal. Be extra,extra careful with every single thing you put into your body. I know it sounds overwhelming right now, but eventually it just becomes part of your "normal" routine. Find a good support system...people who know how serious this disease is.

[TTNOGluten]

Thanks again for the words of encouragement, it seems patience when you feel like dog doo-doo, is a hard thing to come by, one thing that seems to be really aggravating in addition to the abdominal pain is the mid back pain and muscles aching. I have always been a very physically active guy, but this is kicking the snot of my muscles with aching and fatigue. Sometimes I wonder if it is or isn't related?? I have read that muscle pain can be associated with celiac? not sure, seems odd, often seems like when the bloating is real bad I feel those cramps in the back. Regardless I am going in to have my thoracic spine evaluated soon, at least I might feel better knowing nothing else is amiss.

Again thanks for all the words of encouragement, it is good to know that I am not alone in this battle....

[cougie23]

Thanks for the support Cougie, try as I may I am sure that I will screw a few things up, I have heard a number folks say that it does take some time to start feeling normal again, and when days turn into weeks, it sure gets very frustrating waiting for the cramping to settle down. I hope I can get to the point when I feel well again, it sure seems like the symptoms vary so much from person to person, I am glad to be stuck with very little diarrhea, but think sometimes would rather trade that for the constant belly pain and cramps--Yuck

thanks again

Google:"Honey medical benifits"Like I've said in a previous thread...It's amazing the benifits of honey.But my backs really jacked up right now and I'm too tired to get into it.

But google it it's very benifitial too us...antioxident, heals the digestive track...vitemens...you name it! You can saute your veggies in it(I recomend cooking broccoli and carrots in a pan of cold water..its done when it comes to a boil...in a nother pan cook some sweetpotatoes till ALDENTE...drain both and put aside...take a frying pan with some olive oil and a little EARTHBALANCE margerane or Smart balence light also gluten dairy free..and saute some mushrooms...eggplant and golden raisins if your up to it...throw in your veggies and saute putting a generous amount of honey over the top...mix it all up...sauteing another minute..then throw in your sweet potatoes...fold it in getting all the flavoring on the potatoes and yum!!!...your done you just made a REALLY YUMMY glutenfree veggie dish FULL of ANTIOXIDENTS and vitemens to heal with!!! you can use this as a base and throw in chicken,scallops,shrimp, pork,steak...use your imagination...have fun with it!!!

And the honey...there are sooo many ways you can get your honey!Sliced fruit together or seperate(bannanas,apples,strawberries,pears,peacches...the list goes on).If you want something warm and soothing(and nothing is setting..this is what I do when I can't eat anything) is to slice some apples,and peaches(opptional)put a little gluten/dairyfree margerine and just a tiny bit of water in a pan with the apples and alot of honey and cinnimen and poach them(basicly i stir it on a medium/high until the water evoporates and the fruit gets soft and carmelized),throw in your peaches(allso works with strawberries or bannannas and /or golden raisins) at the last minute because they are delicate and cook fast...stir it all up..maybe adding alittle more ciniman to taste...and let cool a few minutes! its good anytime of day..very soothing on an upset tummy..especially be fore bed with a nice cup mint tea! you can put it on gluten free gronolla..glutenfree yogurt,glutenfree oatmeal..warmed bannanas cinimon and honey with golden raisins makes a great fruit burritoe with corn tortillas(just read your lables carefully..some CORN tortillas have wheat,some don't...I've been using MISSION and that has been working ok by me.put your honey on your glutenfree yougurt...there are so many ways to eat healthy...we just need to change the way we look at things..eat unprossesed..the possibilities are endless you don't need to compomise just explore new possibilities...the less chemical and the more real ingreadients the better...you'll wonder why you never ate like that before..and really apreciate your food.

Take care..gotta go...check out the treads about cooking we have some great cooks here with great ideas...get healthy!

[Roda]

Make sure you have replaced any baking items/herbs/spices and condiments that may have been cross contaminated before you went gluten free. Have you replaced any scratched cookware/bakeware, wooden spoons, wooden cutting boards, toaster, pasta strainer? These are all hard/nearly impossible to clean out all the gluten residue that could harbour in them. Try to be patient, I know it's hard, but one morning you will wake up and realize that you feel good. Welcome!

[AVR1962]

You mentioned your stomach is burning. Were you given anything to help that? If you are not taking a prescribed med, try an antacid 20-30 minutes before meal. Even if you have never had acid reflux issues before. It is acid in the stomach that is causing the burning, I had it real bad. If you ahve to take Pepto in between meals do so but you need to protect your stomach, it needs to heal. I went on a low acidic diet and it did help. If you are eating dairy, I would suggest you cut it out until your stomach heals as it is very hard on the stomach.

Besides CC in the kitchen and the products you use you might be aware that other things can cause issues for us like soy and high fructose.

What do your vit levels look like? Being new, it is likely you may be low in areas of d, calcium, magnesium, iron, and B12. You can easy find out what the symptoms of each deficiency is by googling them. This won't take care of your stomach issues but supplements can help those who are deficient. Make sure you read what other ingredients are in the vits, many have soy.

[TTNOGluten]

Had vitamin levels check and they looked ok, and have been trying some Nexium 40mg and occasionally Zantac, it seems my diet is still quite erratic and I have never been without abdominal pain for the past two months to really know what makes it worse or better as it constantly hurts. I guess I just need to start eliminating other things to see if it makes a difference, maybe starting with soy and lactose. The fructose is quite hard as it seems to exist in a lot of unprocessed foods as well like fruit.

[nora-n]

too much starch I think.

When your villi are damaged, the enzymes to digest sugars and starches cannot be made since they are made at the tips of the villi.

Check out the emergency suggesteions at scd diet (cooking a pot of chicken broth) for example (scd was the old form of celiac diet before the celiac diet was rediscovered by doctors, and it worked well, it is gluten free)