Lisa

I don't think I ever once mentioned how I think you feel on the diet. I only mentioned how I feel on the diet. I don't transfer my feelings onto any other people who face this disease. In fact, I find it unnerving that I seem to be the only one who felt and continues to feel this way. I cannot say why I am having these feelings. But it's not something I've taken lightly. It's not something I want!

Nevertheless, I always felt "without."

Sooo, what missing?

Some of you probably remember me from my rantings of being on the God-forsaken gluten-free diet. You may also remember that I was having a lot of trouble coping. Well, I'm off the diet. Here's the story.

First, I have a number of autoimmune diseases. The worst one is Primary Sclerosing Cholangitis, which, my doc tells me, will likely require me to have a liver transplant 10-12 years after diagnosis (which, by the way was in 2007). After a 6 month depression trying to deal with that diagnosis (I'm not going to go into all the statistics and crap I read about because it's depressing), I decided to ignore it and live my life like I never heard the words, "primary sclerosing cholangitis."

This past January, a routine biopsy (endoscopy) for Crohns discovered crypt hyperplasia, blunted villi and other stuff indicative of celiac. Blood tests were done at my insistence, with the only "mild positive" result being the IgG Gliadin. I think I was just a few points above the upper limit. Everything else was negative. Doc "strongly recommended" going on the gluten-free diet and directed me to a dietician who has celiac himself.

Due to my other autoimmune issues, I have a lot of blood tests and other diagnostic tests. They discovered inflamed lymph nodes in my abdomen that they are keeping tabs on. With this information, and the fact that villi *could* be blunted due to other conditions like soy or dairy intolerance, lymphoma, intestinal cancer, and a few bacterial infections, I wasn't wholly convinced that I actually HAD celiac. In fact, I realize now, I was in FULL DENIAL of it. Even when discussing it with people, I would say, "I've been diagnosed with celiac" not "I have celiac." Unfortunately, the ONLY way to rule out celiac was to go on the diet and then redo the endoscopy.

It took a little cajoling to get my doc to do a follow-up endoscopy. At this point, my depression had gotten so bad I went on prozac to try to control it. The ONLY REASON I was depressed was because of the diet, which I LOATHED, and made note of here on more than one occasion.

The endoscopy was the Thursday before Christmas. Friday, I had my first gluten-filled meal and ate it with much enthusiasm. Those four days after the endoscopy were pure bliss. No worries about what was going into my mouth or what they had been in contact with. It. Was. Awesome. Then, Tuesday, I received the call from the nurse that changed everything. There was NO note of blunted villi. The duodenal biopsies (he only took 2) came back NORMAL. All I can say was that I felt like I had been shot just as I was making flight toward freedom. I tried to rationalize that maybe he didn't get the right spots. I mean, he only took TWO biopsies. He could have MISSED the area. Don't they say that all the time - that it's a crapshoot on whether you'll find the blunted villi??? But I KNEW what it meant. It meant that the 9 months I spent on the diet healed my villi, and the blunting was, indeed, due to gluten. I was (and still am) devastated.

For 2 days, I cried. I debated whether it was worth living. I couldn't go back to my gluten-free prison again. Couldn't do it. The mere thought made me want to vomit. I had visions of escaping this life. I couldn't decide whether it was better to live a short happy life where I'm essentially killing myself, OR to live a long life filled with bitterness and misery and wishing I could kill myself. Because, I'll be honest, I'm not sure it is possible for me to be happy on a gluten-free diet. I have suffered NOT ONE ill consequence from going off the diet. NOT. ONE. Additionally, I never tangibly benefited from the diet either. I didn't get more energy. I didn't feel any better. And, if anything, I feel better after going OFF the diet. Mainly, because the stress of it is gone.

And, really, it's not just the diet. It's what the diet represents. I KNOW my health is precarious at best. After the liver disease diagnosis, I had to dig myself out of the trenches and DECIDE to IGNORE it. I could live a happy life pretending that I wasn't sick because I didn't FEEL SICK. The gluten-free diet reminds me EVERY DAY that I'm sick. EVERY DAY, several times a day, I have to think about what's in my food, what it came in contact with, and will it make me sick. Every day, every time I eat, every time I see someone else eat, every time I see a commercial, pass by a restaurant or just get hungry, I am reminded that I AM SICK and I WORRY and STRESS and HATE IT. I cannot live my life like that. I can't live my life in constant worry about my future. Waiting for the other shoe to drop. Waiting for more bad news.

I don't know if I can go back to that prison. I know I'm killing myself by eating gluten, but I'm not sure I care. I KNOW people will bring up my kids, but it's no good if I'm doing what's physically responsible, and then turning into a shell of a person who is emotionally unavailable as a result of it. I don't want to live my life dependent on an antidepressant merely because I can't handle being on a gluten-free diet.

I NEVER imagined myself being in this position. I Never understood addiction. I could not comprehend how someone would choose drugs, alcohol, or whatever the addiction is, over their friends, family, children, even their own life. Yet, here I am, making the same damn choice without the excuse of a physical or chemical addiction. I don't know what to say for myself. There is no defense. It really doesn't make any sense especially considering how much I've been fighting to maintain the health of my liver and my overall physical health. I took up running to increase my chances of putting off a transplant. Yet, a dinner roll has managed to undermine it all. It has a hold on me greater than the value of my own life.

I don't know why I'm even writing any of this. I know exactly what you all are going to say. But I can't say it will matter. All I can say right now is that I have decided to not make a decision right now. Which means, I'm off the diet indefinitely. I'm living for today. And that may kill me tomorrow. But tomorrow isn't guaranteed, is it?

And it's not such a dreadful place to come back too! A BIG hug to you Suz! Life can be really sucky at times and the people who post here are truly a testimonial of that. I can point you to over a dozen people on this site that have recovered from the deepest, darkest places (both physically and emotional) and came out on the other side with a love of life and a renewed appreciation of good health.

Life carried no guarantees. Walking across the street has no guarantees. Waking up in the morning is not a guarantee. But life is a gift. Family and friends are a gift.

And how did you ever come to realize that a life long gluten free diet is the kiss of death! It's just real life with slight tweek...that's all.

If you struggle with it, we can help. Just ask

2012 is a new beginning. Make a wish! Make a plan!

Some interesting reading: Open Original Shared Link

In a recent paper published in the journal Science, the team presented analysis indicating that 2 to 4 percent of the genes in the maize genome experienced artificial selection.

Meaning? That 2-4 percent were genetically selected by the ancients for propagation of crops = artificial selection?

Open Original Shared Link

Sometimes it takes a while to heal. Although Boost is okay, I would keep your consumption of dairy to a minimum for the time being.

You know how sometimes its says maize (from corn) but most time it doesn't say where its from. I always thought maize was corn, but then I was reading through the coeliac societies handbook and it say we shouldn't eat any maize is that true? If it is I have been glutening myself over and over!!

Maize is corn.

Since 2008 you have been gluten free. I would expect that you are in, what I call remission. For me, it would take repetitive glutenings over an unknown period of time, creating damage, for me to be symptomatic again. Or, built up to the point where I can be aware of a symptom.

But, everyone is different.

I just wanted to add, as Karen did, that Campbell's US and Campbells' Canada , have a very different gluten free listing. Canada gets more,the US gets SQUAT!

Reflux is very common with any pregnancy. Your body parts are moving around to make room for the baby. And the longer you are along the stronger your symptoms my be, with the baby growing.

Eat well, eat simply and keep a good diary. Your poo symptoms indicate some gluten or non absorption, which could be an issue for your baby. I would contact you GYN and describe your symptoms, as soon as you can.

Wavy "Hi" Janet! Santa came through with your gifts on time! Hope you had a wonderful holiday with your family. AND to everyone else.

We had a great holiday and fun to watch the 9 year old and 2 year old enjoy Santa. The nine year old is waaaaayyyy to smart to give up her notion of Santa.

Wish all a happy and healthy new year and I hope my girls make very smart choices in this new year.

I would HIGHLY recommend:

Open Original Shared Link

She is well versed in Celiac and it's issues. And is one of us.

OK, so I got a hold of someone who actually know something. The info on the company email was wrong.

They are in the process of switching over to gluten free gravy. It seems to be a little messy. She advised me not to eat the gravy yet, but that it appears I got one of the new ones.

I told her that, was good.

I also said it is dangerous to place Gluten Free on top of a package, with a small disclaimer at the bottom regarding gluten in the gravy. This seems to have been the old practice. She said it met FDA guidelines to do so. I said it may, but it is bad practice. She promised to pass that up. I should receive hormel coupons in the mail for my trouble

What a great thing you did, to follow up. I think Jenny-O/ Hormel is a great company, but this should have not happened. Thanks for calling this to their attention.

All of Sweet Baby Ray's are gluten free and the best!

We had standing rib roast (and some surprise gluten free gravy from Indiana ), creamed potatoes and beans. And oysters Christmas Eve...yummy.

Did not get glutened, but got a severe reaction to the boy-man or man-boy my daughter brought home!

So...Charlie (my 2yr old) is at hospital tomorrow for his pre-op assessment before his biopsy on 4th Jan. Eager to get it all over with. Does anyone know...will he have to go on gluten free diet before we get the results or wait for them 1st?

I had blood tests done over 3 weeks ago. Rang for results today and theres a note with them saying make an appointment to see doc...looks like i may have it too then but shall see at my appointment on friday morning...!

One minute none of us have it (or so we think) and then suddenly 2 of us possible have it! My daughter will need to be tested next if either me or my son come back 100% positive. What a snowball effect!

Would like to go on holiday abroad 2012 but VERY apprehensive...even eating out seems like a daunting thought...or even eating round at other peoples houses!

If Charlie is done with all his testing, go gluten free asap.

HI Everyone and Happy Holidays!

I was just wondering if anyone knows if B&L French Onion Dip was gluten free? I can't find any information about this product and I'm a little unsure about it. It has " Hydrolyzed Vegetable Protein" in the indregents label.

Thanks for your help!

If the "Hydrolyzed Vegetable Protein" contained wheat, it by law must be listed. And as a side note, anything Hydrolyzed (the process of) would remove any of the offending gluten is it were to be wheat, rendering it gluten free.

Bob and Ruth Travel and Cruises are wonderful!

Open Original Shared Link

I've been searching the forum to see if the hams and turkeys are now gluten free. I went to their site and will call. I didn't find out any info for my state.

I know we all react differently, but I wanted to know if anyone has eaten these rescently? My family will have both the ham and turkey for an upcoming dinner. I was planning to bring my own complete meal, but thought to find out if they are gluten-free and soy free.

Thanks!

Open Original Shared Link

Gluten free, yes.

I have never found any bugle that was gluten-free...not even the plain one...are you sure it is bugle's that you seen gluten-free????

Nor have I. They used to be my favorites.

Hello and welcome to the Club!

This is a great place...take a walk around and ask any questions you may have.

CK, I certainly hope that you feel better soon and your symptoms are relived. Could you have the flu or sumfin'? But, if you are concerned about other issues, you might need to consult a doctor.

You posted this on the Sensitive Thread and hopefully someone will respond soon.

Hope all had a wonderful holiday.

states contains "in big letter "NO GLUTEN. Under ingredients for gravy. only possible mention is modified food starch. No where including inside, does it states contain gluten. To top it off, the ingredients are first listed for the turkey, then the gravy and right below the gravy is the no gluten indication.

Turkey..........

Gravy........

contains milk, NO GLUTEN

Kantoquad

If the Modified Food Starch contained wheat, it would be listed as "modified food starch (wheat), or listed on the ingredient listing,by law in the US. It should be gluten free.

Perhaps the reference that Raven listed has not been updated.

Butterball, recently modified their wheat ingredient in their gravy. It was good too!

The gravy packet ingredients should be listed on the exterior or the packaging as well. Was it not.

...and if you can't find a support group in your area, we're good to hand around with. We have lots of information here and I would encourage you to walk around this site.

And welcome!

I don't see the need to point out they are gluten-free. They asked for rolls, you're bringing rolls. If they don't like them, they likely won't ask you to bring rolls next year.

If someone asks, tell them.

I like this answer too. Life is way too complicated, especially in our lives. Keep it simple for yourself and enjoy your holiday.