lynnelise

Everyone has given you really good advice. I tend to agree that subjecting yourself to gluten will increase inflammation and could worsen your liver condition, so that is something to think about for the sake of yourself and your family. So while I'm in favor of being 100% gluten free maybe instead of always eating whatever you want you could pick certain occassions (Christmas, B-day, ect) on which to eat gluten being vigilant the rest of the time? Again I personally do not think this is a good idea but I have heard from a lot of celiacs and GI people that they do this and being strict with the diet 95% of the time has to be somewhat better than eating gluten daily! Maybe it could even come to the point that these occassions come up and you decide you don't want to eat something glutenous. Maybe you'll feel better just knowing that you have allowed the option.

I do understand the frustration of giving up so much for very little visible benefit. I have chronic mono so basically I feel like I'm coming down with the flu every single day. I hear many stories of people who have great energy and feel years younger on the diet. Personally I have seen some relief of joint aches and a resolving of my stomach issues but my fatigue and general malaise are unimproved. Most days my energy and well feelings are much less my parent's who are in their 70s!!! You just have to make peace with yourself and your body. Easier said than done I know. It's a long process I have been dealing with for three years now. I used to go to the gym daily, spinning, kickboxing, weights. Now I am restricted to gentle walks and meditative yoga. Anything more and I have a major flare and will be basically stuck in bed for 2 weeks. It's hard to accept that I have limitations. It made me angry. Then I think of how much worse things could be and slowly I've come around to being grateful for what I can do!

I have a coworker who started bringing those cup of noodles after she had a stroke. She said she was trying to eat healthier...yes I'm serious. Not only are they full of fat, carbs, and chemicals the sodium is through the roof!!! There could not be a worse combo for preventing strokes!

I started taking Citrucel on the advice of a friend who is a PA and it has changed my world. I thought it was just for constipation but it isn't. It makes things look normal again. Plus I swear it even seems to help some the few times I've been glutened since taking it. It makes the GI effects less severe.

For me it's GI symptoms that bother me most. Once they hit I have a very small window of time to find a bathroom. It's miserable and embarrassing. Also I have chronic mono and it seems to cause a major flare up of that if I'm glutened. I never feel good but I do have some good days...a glutening leads to about a week or two of bad days!

Merry Christmas and enjoy your holiday! Glad you are feeling well!

My husband was being pouty about being the DD at his own company Christmas party. It's a fancy dinner at a lovely resort with the best food and I can't eat anything but salad. You better believe I'm taking advantage of the open bar! lol! Trust me I love food, I'd much rather pig out at the dinner than drink!!!

Aside from celiac I have chronic mono so I feel beyond tired and generally horrible the majority of the time. I get a lot of people who say they understand because "I was too tired to get to the gym this morning" or "the holidays wear everybody out". I guess they are trying to be supportive but really they are just minimizing my concerns.

That would annoy me too! I guess the person was probably thinking they were being generous and giving you an upgrade. Who would think wheat was in chocolate? Crazy.

Of course the people I work with offer me cookies all the time and don't seem to understand that flour=wheat=gluten. I will tell them I can't have one and they look so surprised and say "gluten is in everything!" lol.

If pressed I say eating gluten is like giving myself dysentery. They can draw their own conclusions from that. lol

I had an allergic reaction to a pneumonia vaccine a couple of months ago and was told by my friend who is a PA to take a combo of benadryl and zantac. I thought it was strange but she too explained that it was a histamine blocker! So glad you found something that works!

It's a personal decision and only you know if the risk are worth the benefits. At least your doctor is aware so he can keep an eye on you and monitor for issues. I know how miserable you've been and I do wish you luck whatever you decide!

Give it time and it will get easier. I've been on the diet for 2 years now and other than croissants and phyllo dough there is nothing I cannot find a suitable replacement for.

Udi's and Rudi's both have really good bread. Udi's makes a fantastic pizza crust. I made a bbq chicken pizza for dinner last night and it was delicious! There are so many good brands of gluten free pasta. I make spaghetti and lasagna regularly. I'm able to make wonderful cakes, cookies, and brownies. In fact the food is so good that my husband and daughter willing eat gluten free at home and seem to feel no deprivation!

This weekend is my husband's company party. I'm pretty well dreading it. It's at a new venue this year so I really don't want to eat. I'm hoping they call our name for a prize early the in the night so we can leave!

I too have been diagnosed with bursitis of the hip. Of course this was only after negative ANA and Rheumatoid factor. I'm really not certain how they could rule that out without the bloodwork though. Even with the bloodwork being negative she advised continued monitoring of the condition as there are sero-negative cases.

I had to go 30+. I hate antibiotics but I was such a sick kid. Constant strep,ear, and kidney infections. Even as an adult I get strep at least 5 times a year. I now have only a handful of antibiotics I can take that still work and don't make me violently ill. Luckily my new doctor is on board with avoiding them as much as possible. He suggests I mix honey and apple cider vinegar and drink a spoonful each morning as in his experience it can help ward off strep. He's also given me a few herbs to take to help my immune system.

Good luck to you! It's so nice that you are looking on the bright side! Hope your next treatment goes as comfortably as possible!

In short no I would not keep experimenting with eating gluten. You are diagnosed celiac so you know it's harming you in some way whether you feel it or not. I would say that after being strict for a year and half you've had a lot of healing so your symptoms are naturally not as bad. However damage is being done and could be substantial by the time you exhibit symptoms! Don't play with fire!

OMG! I'm laughing so hard! That is soooo true!

I'm holding out for a Titanium digestive system transplant. I have one in his first year of mechanical engineering with a friend in bio-engineering. I'm hoping to get them working on this soon.

That titanium digestive systems sounds like a dream come true! I want one too!

I tried one and didn't get any of my usual glutened symptoms. I did think the artificial sweetner taste was too much and I know a lot of people are sensitive to those.

Edited to add that my Starbucks says this drink is safe but I've heard that some locations make the mocha syrup in house so that could cause issues.

Have you had a HIDA scan on your gallbladder? Sometimes you may be free of gallstones but still have a non-functioning gallbladder.

Have you had an EGD to look for ulcers or gastritis? Both can cause a gnawing/burning pain, especially when you are hungry.

Thanks. Sounds as if two of you have had good luck with Chipotle. There is one about 45 minutes from me. Maybe I'll give them a try. I'll tell them exactly what you guys said. Until now, I have only eaten out at the gluten-free bakery/cafe near me--owned by a celiac--and that's all they serve--gluten-free all the way! It's heaven!!

That does sound heavenly! Happy Birthday!

How does changing the gloves protect you from the bits of wheat tortilla that are already in the cheese, lettuce, etc? I have heard this before but the flour or bits of bread or whatever are already in the toppings. New gloves, spoons, etc won't change that.

Edited: Sorry Lynnelise, that wasn't meant to sound snotty to you. Just a frustration I have with food places.

At the ones I've been to things are just dumped on the tortilla. The first person touches the tortilla when they lay it out but everyone else just dumps things onto it without physical contact if that makes sense. I'm sure it's not like that everywhere but the ones I frequent it is. I don't know. I'm pretty sensitive and out of 20 meals I've not gotten sick.

After two years on this diet my mother in law still does not get it.

Once I brought hummus w/ tortilla chips and carrots to eat at a party and she found a bag of pretzels to dip in it!

Another time she told me the dessert she made was safe because it had no corn in it. I have no issues with corn.

At my sister in law's birthday dinner she said she made a pan of lasagna just for me. I cautiously asked what noodles she used and she said "the healthy brown ones" so I say "where they brown rice noodles or whole wheat"? Of course she answers whole wheat. I was so glad my husband was standing there to say "are you an idiot? Whole wheat obviously is made from wheat mom! She can't have that!". Pretty sure me calling my mother in law an idiot wouldn't have gone over so well! lol

Not to sidetrack this funny thread , but you find Chipotle to be very gluten-free friendly, then? I am taking my first gluten-free looooong road trip in March (having to bunk two nights in hotels) and am just a teensy bit apprehensive about eating out on the road. I rely on tips from everyone on here and that has kept me "safe" so far. Thanks!

I love Chipotle! I always go when we travel. Tell them you are gluten free and ask them to change gloves and you shouldn't have a problem! I've been to various locations in about 4 different states and so far no issues!

Instead of the thin celiac where you can't keep weight on, I got the celiac where my metabolism got messed up and losing weight has been very hard.

My thin friend was moaning about not being able to lose 5 pounds. I said something about how I was a size 16 at one point and was so frustrated.

She said "I would kill myself if I was that big."

I cried the whole afternoon.

I hope that guy felt bad for what he said to you.

Wow, that is the rudest thing I have ever heard! How insensitive! I've had a similar thing happen because my boss and I used to be almost the same size. I think she was one size above mine. Well she lost tons of weight a couple of years back and goes on about how she never wants to get that big again and how when she finds her old clothes they are so enormous she can't believe she was that huge. I truly think she has no idea how insulting it is to hear this since I am almost that same size!!!

I sometimes get a feeling similar to this when I'm about to break out with shingles. I believe it's a nerve issue so you may have some nerve damage which can be common with celiac or you could be low on B12.