JulesNZN

Hi Julez, currently my G.I. doctor only has me taking Reglan 30 minutes before I eat something and has me on a low-residue diet. She want's me to consume 6 small meals a day and that just isn't happening! I have no desire to eat with the way I feel, it's hard enough to eat once a day for me. Maybe because i'm just starting this...i'm not sure. I'm definately hopeing for a change soon!! Thank You for your reply!

I TOOK REGLAN AND IT HAS SIDE EFFECTS WITH THE WAY YOUR BRAIN FUNCTIONS. IT DID NOT HELP ME BUT MADE ME VERY SICK AND I ALMOST DIED. I AM SEEING A SPECIALIST IN BOSTON AT TUFTS MEDICAL AND I HAVE NOT FELT THIS GOOD IN OVER 10 YEARS. I AM NOT SAYING IT DOES NOT HAVE SIDE EFFECTS BUT I HAVE NOT BEEN NAUSEAUS FOR 3 DAYS AND I DON'T GET NAUSEAUS EVERY DAY. I EAT ONLY 3 MEALS A DAY. I TAKE MOTILIUM, I HAVE TO HAVE IT MAILED TO ME FROM NEW ZEALAND. REGLAN CAUSES ALTERED THINKING IN YOUR BRAIN AND CAN BE DANGEROUS.

IF YOUR DOCTOR WILL NOT PRESCRIBE SOMETHING ELSE, FIND A NEW DOCTOR. REGLAN IS NOT THE ANSWER FOR A LOT OF PEOPLE. IF YOU WANT TO EMAIL ME, MY ADDRESS IS JULIE.ENZIAN@STATE.MA.US.

IT WAS A VERY HARD UPHILL STRUGGLE FOR ME TO GET BETTER AND I DID NOT HAVE ANYONE TO HELP ME FIND THE RIGHT ANSWER. I HAVE TO SAY MY DOCTOR IS AMAZING NOW AND I AM SO GLAD I LIVE NEAR BOSTON!!!

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This is where I learned some of my information, I have several other websites.

I also have gastric paresis and I also have Celiacs.

It is two separate yet related and I do not have DIABETES. actually the one thing that is good is my blood sugar. What medication are you taking for Gastricparesis?? That could make a difference!

I take a medication not approved by the FDA that is approved in every other country in the world, not a joke. I also take an antiemetic (its expensive) but covered by insurance and only allowed to give me a days worth a week so I supplement with Dramamine as it is OTC and inexpensive. The antiemetic I take that is Rx cost about 200 dollars for one day supply!!!!

Julie

I have had that some times, not so much so more. Talk to your GI specialist, for me it was because my stomach was swelling from irritation and was pushing against my ribs. It was excess acid because I don't eat grain. It may just be that simple. It was for me, thankfully.

I was told by several physicians that the ingredients in grain assist in the digestion of dairy. I have been lactose intolerant since I went totally gluten free, it was about a year later that it became obvious to me that it was the problem. Try a lactose medication when you eat dairy, see if it helps. It takes about 2 or 3 days to see results, but it works for me.

Good luck!

I live alone, so my place is 100% gluten-free. Even my cats are gluten-free.

I don't know what I'm going to do when my situation changes. When I have kids, I know that I will raise them vegetarian, and gluten-free. It is a healthier lifestyle, and would be much easier than cooking 2 meals and having to worry about CC. I work with teens in a group home. I'm supposed to eat the same food as them, but the CC issues are huge. I won't even cook my own food there. Kids aren't capable of keeping their gluten to themselves. I think it isn't realistic for me to expect a child to keep a kitchen safe for me. For that reason, I would not allow gluten in the house.

I too live alone and my policy is my home is gluten free at all times. If it has gluten and crosses into my house it goes directly into the trash. My friends and family at first were upset but did learn to respect it. At this point, I have decided I that living with others leads to gluten everywhere and that makes sticking to the diet EXTREMELY Tough!! I don't know how anyone can live with others eating gluten foods in front of them every day. I know those in my family with Celiac's are unable to keep themselves from cheating and eating the gluten in that situation. GOOD LUCK!!

There's a Boston/Brookline Celiac group on meetup.com. If you go to the main site and search for it, it should come up. I've only been to one meetup, but it was great. Really nice people and they know where to get the good food in the area! I live in Brookline and work in JP.

Thanks! I will definitely check it out.

I have been doing this for a long time over 25 years since i was 6. I got a good handle on it when I moved out on my own but watching others eat gluten and have dessert is still very difficult for me. My family has been supportive around birthdays my immediate family and I have moved all our birthdays to a restaurant and dessert is banned from these occassions. They actually like it better but for the rest of the family, I do not attend events that are filled with glutenous food and temptations such as cookouts and birthdays because even though my family know of my allergy I am not usually able to eat adequately and they make me feel guilty for being hungry. I have found avoidance of these types of gatherings including pizza parties at work if explained is understand and with family matters you could always set up a one to one event which is often more appreciated by the guest of honor at another time.

Good Luck,

hi out there,

I am a 26 year old female and i was just diagnosed with Celiac...I have been spending the week mourning the loss of cake and Chinese food, but really happy they finally figured out what was wrong with me. From reading so many of your posts it sounds like it was a long journey for most to finally figure out what was wrong as well. Anyways, as a new Celiac I was just hoping someone could tell me it gets easier to read food labels, and gets easier to figure out what I can and cannot eat. I am feeling SOOO overwhelmed at the moment and feel like I have so much to learn, and if I dont learn it fast I keep feeling bad. Anyways, how long does it take to really feel like you have a good grasp of what to eat, and it becomes almost second nature?

You do not have to do with out Chinese, it is actually one of my primary food groups. True ethnic chinese and Thai food is often gluten free. Just ask at the restaurant, once past the language barrier I have found that these Asian restaurants understand more than an American or Italian restaurant and if a frequent customer will warn you of an ingredient change. Just stay away from Americanized Chinese restaurants. Spring roll at an Asian restaurant are always made with Rice Paper. Its delicious and better than an Egg Roll, you would be suprised.

Don't eat at an unfamiliar place, the best thing to remember is go to the same place and order the same thing. It reduces errors and the chefs are usually very proud of the specific special meal they make for you. I have found that to be the safest and most fun way to eat out. All the enjoyment none of the worry. Stay away from Chain restaurants because the cooks on when you are eating usuallt do not do the prep themselves and are often unaware fo minor ingredients. I have also found that Brand Loyalty makes for less stress. It is easier to notice a change on label you are familiar with and it doesn't take as much reading while shopping which can often be time consuming.

Hi Violinist. This is a tough one. I am Catholic and really struggled with this issue. Because of beliefs revolving around the sacrament that are central to our faith ( and not really necessary to discuss here) I was fearful that I would be committing a serious transgression by not receiving the host (communion wafer). I was told that I could ask our priest to bless a low gluten host for me. We go to a Cathedral and there are several priests and lay ministers in attendance and several mass times to choose from, so the logistics of making that happen would be great. Even if I provide the gluten free wafers (which I actually found at my local grocery store under the brand name EnerG!) the issue of cross contamination is there and as long as it is there I am not willing to risk it. And remember that there are alcoholics who cannot take the wine either. What do they do?

I was told by someone in my faith, (and my guess is that it would apply to you too), is that there is spiritual communion with Christ that has nothing to do with eating bread. It is perfectly fine to either sit quietly and say a small prayer to God that even if you cannot partake of the physical act, you aks to receive the blessings bestowed on those who are receiving communion at that time. Like your church, we also go forward to receive and it was sooooo hard for me to just sit in the pew while my family went forward so I started going forward with them. I step off to the side as they receive communion and silently make my appeal to God at that time. No one has a problem with it and I feel like I am not being left out of something so important to me.

I like the way ryebabyO's church handles it but if that would be too difficult, I am sure that if you spoke to your pastor, he would be more than happy to offer his blessing over you without your needing to partake of the bread and wine.

Good luck and God bless.

At my church growing up my pastor said Erroneously that My faith in God would keep me from getting sick and many ministers might say that to you. I stopped taking communion because of the gluten but depending on the church I have taken the wafer and pretended to eat so as not to draw attention to myself or have quietly wiaved the wafer away when I reached the front. The looks from the other parishioners is often too much to handle consistently as it is seen as a personal failure not to participate in communion. It may be very hard for you at such a young ageas I do not attend services that often but the judgement on those who do not participate in communion is often harsh even at a funeral service!! I wish I had a more positive message for you.

Thanks for all your suggestions. My 2 parents were in the hospital for 6 weeks and are now in long term care. 3 days from now they are moving to assisted living and I have to sell their apt over one hour away etc so I am truly stressed out. I was diagnosed in the middle of this whole thing so I am truly greatful to all of you for your help. The "squishy" toes really scared me and I hope it is not permanent as it is really unpleasant. I had a complete blood count 8 weeks ago and the doctor tells me my levels are fine but I have been reading about low B12 and toe trouble. Having known diabetes who can not feel their feet at all concerns me. I do not understand how malabsorption would cause this and it is only in my left 3 toes so far. I was having night time leg/toe cramps immediately when diagnosed and the dr told me to drink quine/tonic water at lunch and dinner and it does stop the cramps!! I thought symptoms would stop once I was on the diet. I did not think new ones would start up.

I had the same problem and it cleared up with Quinine Tonic Water but that is just a quick fix, its usually a potassium deficiency, check into potassium rich foods such as bananas, spinach etc. to keep it from returning.

also neuropathy can be anywhere, its in my stomach and has caused gastric paresis and is permanent and degenerative. Get treatment from a qualified expert for any neuropathy as it does not clear up on its own! Speaking from experience the sooner you get qualified help the better off you are.

I'm nervous about buying deli meat, is there a safe way to do it? Do you buy the pre-packaged stuff or ask the store to use a different slicer? Sorry, I'm still learning.

Boars Head Deli Meat specifies which meat is gluten free- you can go online or get the ingredients brochure from your deli. Buy Large leaf lettuc and put your meat and condiments on that and roll it together and wrap it with a napkin and it is suprisingly filling (make sure you don't eat the napking

I have found that it makes a decent sandwich substitute.

Also go to your local supermarket and health food store and ask for wheat free french rolls. They tend to hold together better than the bread but they must be toasted first so condiments are helpful with the aesthetic of the sandwich.

Good LucK!!

I live in Mass on the south shore and am looking to talk to new people who also have a wheat allergy. I have a few relatives with it as it is hereditary in my family and have had it long enought that my friends are familiar but still don't really understand. My other family members with a wheat allergy choose not to follow the diet as strongly as I.

I work in Boston and live down on the South Shore near Cape Cod.

I used to throw up. I haven't recently, though. Everyone's symptoms are so different that I'm not surprised that the small group of celiacs you talked to didn't have the same symptoms as your daughter.

I have had Celiac's since I was 6 years old. I have always vomited and still do. It is more severe when I have been religiously gluten free, often eating a 2 crackers with gluten will stop it, it is the increased acid in the stomach according to my GI specialist and he is trying to reduce it through medication. I am sorry to say it won't get better but may get worse the longer she is totally gluten free.

Sadly from experience eating baby food is the best nutritional answer at this time for him and getting the right medication. I am taking a medication I order that is not FDA approved but has saved my life. I did not need to eliminate dairy. I see a specialist in Boston at NEMC for gastroenterology and he specializes in this and is familiar with Celiac's. I ate baby food for about a month when my illness was severe and that got me closer to the Caloric intake that I needed to live. Good Luck.

The test should come out correct if you have been consuming gluten,however if there are still doubts ask for a colonoscopy - they can tell by the damage.

Keeping a food log with symptoms - using total honesty for both food eaten and how you feel each day for several months and bringing it to your next apt can diffuse the psychsematic statements that they give. also I have found with multiple GI problems like me, doctors listen to your much better if you have a therapist who you see who says you are balanced and not paranoid. Unfortunately that is often necessary for doctors to believe you. Anything that make you healthy and happy is worth pursuing. GOOD LUCK!

I see a great gastroenterologist at NEMC in Boston, they have several different MDs all for adults all with different specialties. You should try there, they are very informed about Celiacs I found when I went in for my gastoparesis.

Hospitals are VERY BAD about Gluten Free!!! Bring your own food and plan ahead! The hospital is very cooperative when you bring in your own items, they will label it for you and keep it on the same floor you just need to ask for your food. The nutritionists are not usually well informed, be prepared to do a lot of explaining. Do not count on the hospital to be able to handle your special dietary requirements they are set up to feed large amounts of people and can not be trusted to give you safe food. They kept trying to feed me JellO!

Have a motility study done.

How are any of you with this diagnose eating/ I was told with gastric paresis to eat low fat, low fiber, with the celiacs thats my primary diet! High fiber and high fat just to keep the weight on but now its working against me and I feel like I'm running in place. I am taking Domperidone as I can not tolerate any of the other medication and I tried them ALL. Don't even want to remember that experience the psychiatric side effects of those meds was a true living nightmare. Now I just have biological side effects which I will have to live with apparently as long as I want to live and I did not struggle to learn to live with Celiacs to succumb to gastric paresis! Any suggestions would be great. Never found a competent nutritionist to help me with Celiacs never mind this connundrum. Any Suggestions would be great! I live in MA.

I have endometriosis, celiacs, and gastric paresis. All of these disorders according to my GI specialist are related. They are immunodifficiency disorders or otherwise your immune system attacks things that are supposed to be left alone. The endometriosis can make intestines flair up and it is caused by similar things but in that way only are they related. If you have endometriosis you should get it treated. You can be tested for Celiacs its a simple blood test if expensive but you MUST be eating wheat before you take the test or it wont come back correct. Good Luck. Either diagnosis is no picnic.