Shanmegjilal

Thank you so much for all of the input.I'm trying so hard to not let this ruin my life but instead of getting better at dealing I feel like it's getting harder.I just feel like EVERYTHING involves food.I go and pretend I'm fine but inside I'm so upset...It's definitely the psychological part of this disease that's wearing on me.I guess somedays are better than others and I don't want people to not include me yet I just dread anything where food is involved....If I don't want to go to someone's party because I feel awkward and just don't feel like explaining my restrictions is that ok or am I giving in to this??? What excuses can I use to not go without saying "my diet"? Thank you

Hello, I have been going to parties,BBQ's,etc for the last few years since being dx'd but now I have started to decline invitations because I find it so hard to go and watch everyone else eat and comment on how good everything tastes and  having to pretend it doesn't bother me. I find it's easier to eat at home first rather than bring my own food to events because it's hard to heat it etc. with a lot of people around and I've had people ask to try my food,etc!!!.  People ask what they can get for me to have and can't understand why I won't use their grill,etc.I just don't like explaining it all the time....I guess i"m kind of burnt out from this!! I try but I feel like I'm becoming more and more antisocial....Anyone else go through this? Thanks

Thank so much.That's a good idea.Do you call the restaurant and ask them if it's ok first?Have you ever had a restaurant not allow it?

I am in a similar dilemma and so worried about how to handle it.A large group is meeting at a Sports  Pub  and when I called they said they can do grilled chicken and "we have vegetables".The girl on the phone didn't sound that confident leading me to believe they may not do this too much.I usually only go where they offer a gluten-free menu or where I feel confident they can handle this.With it being a large group on a weekend night I am nervous.What do I do?Go somewhere else where  they do a gluten-free menu without the group? I think I would feel very awkward just getting a drink plus I am away so it's not like I can go home and eat...It's so hard always feeling "anti-social".Thank you for any input.

Thank you for your help.I definitely need to cut back on the breads!!!I just find this diet so hard as I was always a bread lover!A lot of vegetables bother me such as spinach,broccoli,summer squash and zucchini.Also, different types of lettuce.The gluten free bread type products have just been easy but I'm paying the price.I do exercise but will try increasing it!Thanks.

I believe I have read and I certainly believe based on personal experience that the more processed carbs you eat, the more you crave, the more you eat, the more you crave. Science has definitely proven that this is true of high fructose corn syrup, which may be in the gluten-free processed prepared carbs you are eating. If I remember correctly, it interferes with the production of leptin, preventing you from ever feeling full. So you eat a muffin with HFCS, you don't feel full because your body is not producing leptin correctly to signal your brain that you are full, so you eat more, take in more HFCS, still don't feel full . . . it becomes a vicious cycle. I now make (or am planning to learn to make!) gluten-free bread so my son can take sandwiches to school, I make gluten-free pancakes maybe once a week, and the crackers and cookies are only treats for the kids. For treats, I, personally, have a scoop of So Delicious coconut milk ice cream or a bowl of watermelon, but I think you have to feel good to get to the point where you can make the switch. You need some incentive and not really in the way of a reward. The way I do that is with exercise. If you hate exercise, I think you haven't found the exercise that floats your boat. Take a dance class, walk on the treadmill with your ipod, row a boat (or a machine), play recreational soccer . . . whatever makes you feel alive. And if none sounds good, just pick one and get started. If you don't like it, try something else. When you exercise and have fun and release those good chemicals in your brain, you will likely stop wanting the foods you are wanting to eliminate. I'm neither a nutritionist nor an exercise physiologist, but I try to stay educated on these kinds of things, so hopefully, it is meaningful to you. If there is a nutritionist out there who wants to correct me, feel free! Best of luck to you, my friend. I hope you find your groove.

Hello,I was dx about 1 yr. ago.I crave breads,muffins,cookies(I eat the gluten-free ones) and chocolate.I find that I like a a couple glasses of wine at night now as my "treat" from being "deprived"!I've been gaining weight.I'm always hungry and find that a sandwich with udi's bread doesn't fill me at lunch so I snack on peanut m&m's in the afternoon,etc.I've tried to substitute with fruit but it doesn't help.I was never like this before dx!!!Help!!!!

Has anyone had any positive experiences in dining at either of these places?I wrote to both but didn't get any specific recommendations except Cedar Steakhouse at Foxwoods .I've dined there and found them to be very knowledgeable and helpful but expensive!I was wondering if anyone else has tried any of the other restaurants at either of these places.I'm going to a show there in Sept.???Thank you

I've been going to the 99 restaurant because they have a gluten free menu.I always get the gluten free hamburger roll so I know exactly what it looks like.The other day I received a different roll and questioned it.The server said he had verified it was gluten free with the chef before he brought it out.He offered to recheck because I said it looked totally different.He checked and returned to tell me "it's good to go,it's gluten free".I figured they may be using a different vendor.It also looked different from my daughter's "regular" roll so I ate it and was ill the next morning.I emailed the restaurant and received a prompt reply by phone.The manager informed me that he was sorry this happened and didn't know what roll I received!!!He said he'd speak with the staff and send me compensation...Who cares about compensation!I feel like I've "undone" all the hard work.I've given up other social functions,not eaten at cookouts,etc.This totally undoes everything!!!How could this have been avoided?!It's so frustrating!!! I feel like I need to sit at home and never go out!I feel like EVERY time you dine out it's a HUGE risk!!!!!

I've been getting worried,too.I've been gluten free for 5 weeks and my symptoms of numbness and tingling in my extremities hasn't changed at all.In fact my back has gotten even itchier!!!Is this normal?People who had these symptoms, it's months for them to clear sometimes??????????????I've begun to worry that something else is going on????

I just tried Trader Joe's English Muffins Gluten/Dairy free.They are VERY good but as I'm finding they HAVE to be toasted which you do with English muffins anyways.I've been making sandwiches with them as they are pretty good sized....I was so happy to find these!!!!

Has anyone read up on research to see if there's any hope that someday this disease may be treated by meds or cured??!!!!I've only been gluten free for 1 mnth and am dreaming of having some of my favorites again LOL!!!

My symptoms prior to diagnosis were only neuro symptoms.I've had and still do (dx 1 mnth ago by bx) have toe numbness and pins/needles in my feet.For a couple mnths I had vibrating from my feet up.My left hand has less sensation than my right and in fact my left foot seems worse than my right!Very weird.My Dr. never thought of celiac and had been going through all the neuro checks,thyroid,diabetes type workup.I goggled my symptoms like crazy and found people talking about celiac dz.My Dr. agreed to the antibody tests but even when they were pos. didn't think it was celiac because I wasn't having GI symptoms!!!!

I just started the diet 1 mnth ago and am finding it very difficult and discouraging right now.What a HUGE lifestyle change.I have a husband and children who eat "regular" food and I'm trying to keep it normal for them and gluten free for myself.I end up skipping meals sometimes because it's too much of a pain to look everything up,etc.We used to love to eat out once a week now I just get nervous and don't really want to.I pray that I can accept this but it's so hard.I even get nervous when invited to someone's house for a "get together" as I don't want to single myself out and look like a picky eater,etc.....Thank you for this encouraging post.I hope someday it will be me writing this!!!!

I just had the Bone density test and was told I had osteopenia and need to start 1200 mg of calcium w/ vit. d per day.Does anyone know if there is a certain brand that is safe?I know it's over the counter.Thank you.

Hi , I found out by bx that I have celiac about 1 mnth ago.The GI nurse called to tell me and said to do the diet and the Dr. wants to do another endoscopy in 4 mnths.Thats it???!!!My health insurance doesn't cover a nutritionist consult which my Dr. ordered.I'm figuring it out but don't even know when my numbness/pins and needles in my feet will/should go away.How do I know the diet is working(I've been doing it 1 mnth)???Can I really wait 4 mnths to see?I kind of thought I should have more bloodwork to see if I have any other vit. deficiencies,etc.I know my B12 was low but that is high now after supplementing....How long did people's symptoms continue on the diet?Thanks.

Hi, I'm new to this forum.I was dx with celiac by bx 1 mnth ago.My hair started to get VERY greasy last October!It was definitely something totally different for me.My B 12 level was very low.I received B12 inj and now my level is up.My hair doesn't seem as bad but I think it takes some time.I think greasy hair could be related to vitamin deficiencies, maybe check with your Dr.Hope this helps!

My 17 yr old dd washes her hair everyday. Today she washed it before and after school. Her hair was greasy even after she washed and dryed it after school. She recently changed shampoos/conditioners. She has woken up with greasy hair every morning for several years. She has been a vegan for 7 months and mostly gluten-free for several months. She is not diagnosed celiac but is gluten intolerant. Her only symptoms are overweight, keratosis pilaris on her shoulders and an itchy head when she used shampoo with wheat in it. Could she just be detoxing??

My 20 yr old had greasy hair at the back of her head when getting glutathione injections, doc said that was her liver detoxing. It stopped when the injections stopped. She is gluten intolerant.

Anyone?? Thanks!

Thank you for all your info.I really appreciate the help.I had been receiving B 12 inj. for 3mnths prior to dx of celiac due to a low level and was also taking B-complex supplements and now my level is >1500!!So, now I'm off the supplements of course but I hadn't thought of Mg and Zinc....Should my Dr. check these levels?

This sounds crazy but if I eliminate soy,corn,eggs,nuts,etc what's left!!!!!This is sooooo hard!

An itchy back with no rash was one symptom I had growing up. Nobody every knew what from.

For the tingling and numbness, I'd recommend a few supplements. A sublingual methylcobalamin (active form of vitamin B12), and magnesium are the two which seem to help most with such symptoms. Not surprising, since Celiacs are often deficient in both. A B-complex is also widely recommended. Zinc may also help.

Lastly, you may find it helpful to avoid a few other things while healing. Dairy is very often troublesome at first. Other top allergens like soy, corn, nuts, eggs, etc may need to be avoided as well.

You might want to start a food journal, to keep track of what you eat, and how you feel each day. Some patterns may emerge which you'd not recognize otherwise. It is not uncommon for symptoms to appear the next day, or even several days after eating a certain food.

Sooo as I am reading I may possibly need a biopsy. Well I will say I am not excited about this at all. Not one bit.

Reasons being. I had my second endoscopy this last summer. They found polyps in my stomach so they took a few boipsies of those during the endoscopy. This would have been fine and dandy if I wouldn't have WOKE UP in the middle of this. So therefore I am now super traumatized. I woke up during the biopsy. I remember feeling pretty much everything.. hearing everything yet I couldn't open my eyes.

I still have issues from this as I can remember feeling the tube going from my throat all the way down to my stomach area. My throat would constrict on it making it hard for me to breathe and I remember gagging pretty horribly my whole body was heaving. I remember the nurses and doctor tell me to "Breathe Kristin.. We need to you to breath.. " then I heard them scrabbling to put more of the junk in my IV. After that I did fall asleep again but.. man I cant get that whole thing out of my head. Even now just typing that out it gives me anxiety. What was worse is I remember being in a shared recovery room with like 5 other people and the nurses would ask them if they recalled anything that had happened.. each person said no. They never asked me!!!!! geez I may seriously need to go see a counselor about this now!! anyways I don't want to scare anyone. My first endoscopy, was super I remember nothing about it at all.

maybe I wont need get another one.. i hope.

Hi, I was diagnosed 4 weeks ago by biopsy and my main sx are pins and needles in both feet and a numb toe.I also have decreased sensation in my left hand and a very itchy back!Anyone else with this?How long on the gluten-free diet until symptoms resolved?I'm trying not to worry but read that these sx can be present in lymphoma and I know celiacs are at a greater risk for that.Please help!Thanks

I am curious what everyone's age here was at diagnosis. Whenever I heard of someone having Celiac before, I assumed they knew since they were babies. So, imagine my surprise when I found out at 36.

Now, I know better.