tspiggy

A week into eating gluten-free and feeling somewhat physically better, but emotionally still fragile.  I'm having a very difficult time dealing with my DX despite reassurances from so many of you.  My moods are all over the place and I have a meltdown every day at the most unexpected moment (today's happened while sitting in my stylist's chair having my hair cut and colored...thankfully she's a friend of mine and had a box of tissues ready).

A few minutes ago I came across a story one of my friends posted on Facebook about Hostess Brands shutting down and liquidating its assets today.  We all commented on how sad that one of our childhood icons, the Twinkie, will be no more.  Now, I haven't had a Twinkie or a Ring Ding (my favorite) in years, but now that I can't have one because of celiac I suddenly wanted one.  It's one thing to choose to pass up something; it's entirely different when that choice is taken away from you.

Realizing that whatever Hostess items currently on store shelves are the last opportunity for my husband to have his beloved Ring Dings, he just took off for Sam's Club to stock up on as many boxes as he can get a hold of, leaving me simultaneously fuming and sad.  I can't begrudge the guy his Ring Dings, and I've certainly put him through the ringer ever since my DX.  He and our daughter have been insanely supportive.  But man, it seemed so insensitive of him.  So here I am venting because I don't want to make this an issue with him.  All I said to him was, "Just please be kind and hide them and don't eat them in front of me."

After my tantrum here I'll put on my big girl panties and deal.  I just needed a place to vent.

Thanks.

I wasn't entirely sure where to post this question so if I'm in the wrong place I apologize. Bear with me; I'm a newbie.

I'm now on day 6 of my new gluten-free life and am discovering that because much of my diet already consists of whole foods it's not as difficult as I originally expected. Avoiding cc because I share a kitchen with gluten eaters is the bigger hassle but again not terrible because my husband and daughter are helping. I'm still feeling emotionally fragile as I process this new, completely unexpected news but I'm hoping that will eventually subside as well. On the upside, I noticed that after only a few days the brain fog has lifted and the myriad odd little aches and pains are gone. It's amazing what gluten does to a body.

Anyway, my husband is a firefighter and we're attending his chief's 20th anniversary commemoration party on December 8th at the La Quinta hotel in our town. It's a full sit-down dinner with a limited menu offering a choice of beef, chicken or fish but I naturally worry about gluten-containing ingredients and cross contamination. We accepted the invite before my DX and because my husband is an officer he's expected to attend. I also don't want to miss the fun, so we agreed to go ahead with our plans to attend.

I'll deal with the emotional aspect of this when it comes...I'm hoping I'll have so much fun dancing and partying that I won't feel as isolated as I do now. But how do I handle the meal? I've read advice to eat before going to a party or bring something with me that I know is safe. But how do I handle an event with a dinner that's going to be prepared the same way for everyone? Should I contact the hotel ahead of time and explain my situation or seek out the maitre d' at the event and explain it to him privately? Or should I simply eat before we go and avoid the hassle altogether?

I'm 49, newly diagnosed and started the diet this weekend. Eliminating gluten from my diet (at home, anyway) isn't going to be as difficult as I thought because it turns out that about 90% of what I eat is already gluten-free and there are gluten-free versions of the remaining 10%. I've eaten pretty healthy all my life so I can deal with the dietary restriction.

But the emotional aspect of the disease is affecting me. First of all, I was shocked to learn I have celiac disease, as I don't know anyone in my family who has it. If it came from one or both of my parents then their undiagnosed (and therefore, untreated) celiac has had no affect on either their health or longevity. My father is 92 and my mother is 86 and they're both in remarkable health. My brother, who's 63, doesn't appear to have the disease. Lucky me; I crapped out in the game of genetic roulette.

Anyway, my quality of life and emotional well-being are becoming compromised. Taking the necessary precautions to eat safely all seem to require a level of paranoia that can't possibly be good for my mental health. I made the mistake of reading all the medical websites that describe the potential complications of untreated celiac disease, and I'm terrified of the consequences of accidentally ingesting gluten. I will never knowingly cheat on the diet but accidents are inevitable. I'm lucky to be a “silent” celiac who doesn't have an extreme reaction to gluten but I'll know the damage is on the inside and increases the risks of worse things happening to me down the road.

I don't want to adopt a victim mentality or define myself by my disease. By all means I have to be careful when I eat but otherwise want to live a normal, healthy life that includes (eventually) dining out, socializing and traveling. I'm hoping that in time taking the necessary precautions becomes second-nature and I'll go about my life as usual. But right now my condition and its potential future health implications are all I can think of.  I feel as if I'm walking around with a sword over my head.

So how do you stay sane and not let celiac disease adversely affect your quality of life?

Hi,

I just received a celiac disease diagnosis a week ago today. My GI had ordered an endoscopy looking for gastritis based on my symptoms, and while the procedure did indeed reveal mild gastritis, a biopsy taken during the scope confirmed celiac disease. I'd heard of the condition but knew nothing about it except that it had something to do with gluten. The doctor explained it as an allergy to gluten, that there was no cure and that the only treatment was to go on a gluten-free diet for the rest of my life.

Because the news was so completely unexpected, I couldn't come up with many questions on the spot except to ask what happened if I accidentally ingested gluten. He said I could occasionally lapse from the diet with no harm. For example, if it's my birthday and I want cake, I can have cake. He pretty much made it sound as if the condition was no big deal and that it could be easily managed simply by eliminating gluten from my diet. I was given a prescription for a nutritionist for more information and said he and I would talk more over the next several months.

He also ordered another test called a capsule endoscopy, which I accepted unquestioningly at the moment because I was still processing the news, and we scheduled it for October 26. He said I also needed to have blood work done (celiac panel) before the test, so I spent last weekend looking for labs in the area that would accept my insurance. Because eliminating gluten from my diet would affect the test results, I was advised not to make any changes until after the capsule endoscopy.

On Monday of this week (the 15th) I found a lab near my home that accepted my insurance and went on their website to make an appointment, but had to call the doctor because I had no idea if I needed to fast for the test. The doctor's assistant referred me back to the lab, but I insisted on speaking to the doctor. Because he wasn't available I left a message asking him to call me asap. He called me on Tuesday night. By then I'd also started questioning the necessity of the capsule endoscopy.

The doctor told me I didn't need to fast for the celiac panel, but he asked me to call my insurance company because they had denied approval for the capsule endoscopy. He added that if my insurance didn't cover it he didn't want me paying out of pocket for it and we could work around that. I took the opportunity to ask him if the test was even necessary and he gave me a vague "Yes and no". I asked him when I should see the nutritionist and he said "Whenever you'd like". Then I asked my doctor if there was any follow up involved. He said yes, but didn't elaborate. I had to press him to get some sort of answer. He said we'd meet every 2 - 3 months to discuss how I was feeling, and I'd need another endoscopy in
"a year or so".

Then he rushed off the phone before I could ask him anything else.

Yesterday my insurance carrier confirmed that they had denied the capsule endoscopy because they considered it an investigative procedure rather than a diagnostic one. I agreed and didn't fight their decision. Then I called the doctor's office and canceled the appointment for the procedure next Friday. Because I wasn't having the test done I also decided not to make an appointment for the celiac panel, either. The nutritionist was covered so I located one who accepts my insurance and called to make an appointment. I've yet to hear from her.

Meanwhile, I've been Googling celiac disease (which is how I found this site) and am overwhelmed by the amount of information, some of it conflicting. Someone on a forum on another website said that celiac disease isn't always accurately diagnosed with blood tests or even biopsies. My symptoms are very mild compared to those of others who have posted on different forums, including this one. I'm still on my regular diet and actually feel better than I did when I first went to see the GI in August. This is all leading me to question whether or not I actually have celiac disease. I don't know when -- or it -- I'm supposed to see my doctor again, and I can't get a hold of him. Now that I'm not doing the capsule endoscopy or celiac panel I don't know if I should start eliminating gluten. I feel lost and in limbo.

Adding to my confusion is that three weeks ago my husband and I had our annual physicals which included a complete cardiovascular workup and blood/urine tests. I gave five vials of blood, which were tested for a wide variety of things. We were told that we'd only get a phone call if our lab results came back abnormal. Our follow up with the cardiologist to discuss the results is in two weeks and so far neither of us has received a phone call about our results so we're assuming that everything is fine. It's entirely possible that they've forgotten to call, but they were quick to call my husband last year when his labs showed high cholesterol and high triglycerides. I didn't receive a call and all my numbers came back normal. My point is that if I haven't gotten a call this year then it's safe to assume that my bloodwork is fine, meaning I'm not anemic, which also leads me to question my diagnosis.

Clearly I need to switch doctors, perhaps get a second opinion. I don't feel sick; in fact, ever since I started working out again last month I feel great. Should I start eliminating gluten from my diet anyway? Should I have the celiac panel done even though I'm not doing the capsule endoscopy? Can somebody please shed some light and clarify my situation?

Thanks...sorry this is so long.