This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc. Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
Nope. He was sure of it based on looking at it and hearing my history. I did explain that I have celiac and have been eating gluten and that perhaps that the rash is DH. But he was adamant and completely confident that it is shingles.
On another note, my thyroid is watched closely - every 6 weeks I am tested. I was hyPERthyroid for a little bit, but none of my symptoms were relieved (constantly cold, forgetful to the point of being unable to remember to take my meds which is unusual for me, fatigued).
Yes, the dermatologist said that he has no doubt whatsoever that it is NOT DH, but shingles. And, he would NOT give me medical clearance for any of my procedures. I'm to go back in 2 weeks to hopefully get clearance. New dates for my biopsy and surgery, which doesn't make me happy.
This is VERY interesting. I HAVE decided to get back on the diet, but just not yet. And I am probably going to try to focus on whole foods in general, as opposed to the processed foods. I figure, if I'm going to diet for my health, I might as well go all the way. Processed foods can be something I eat as a treat or on rare occasions, but not as a regular thing. It might be a good time for a life-change. I just have to get to the point where I'm ready to do it.
As for the hysterectomy, my doc thinks that ablation has an "abysmal" success rate. If I had the option of taking hormones (can't due to the liver disease), then that would have been our first option, I'm sure. The ovaries will remain unless there is a medical need to remove them. I already have osteopenia and I can't take any hormone replacement, so it's in my best interest to keep them if at all possible.
Going to the dermatologist today for the shingles.
Oh, and I got an antiviral (even though it is a bit late in the game to take it, my doc thought it would still be in my best interest to do it anyway) and an antibiotic (because one of the areas looks like it's getting infected).
Ok. I've been off the prozac for at least a month now. It just wasn't providing any benefit and, in fact, made things worse. I feel SO MUCH better off of it.
The hysterectomy (and this will be TMI) is due to several issues: heavy bleeding to the point of ruining clothes and sheets every month; cramps; uterine, colon, AND bladder prolapse; and the possibility of something being off because of a fishy finding on pelvic ultrasound. I'm SUPPOSED to get a hysteroscopy D&C (to rule out cancer and hyperplasia via biopsy) THIS Thursday. If that is postponed, I might have to postpone the surgery because what they do is dependent on the biopsy results. So we need the results prior to surgery, which will be laproscopic barring any complications. Technically, I probably *could* put off the surgery for another year. And that *might* be a consideration if I didn't have my liver to consider. Although I am stable and have been for 4 years, this disease is unpredictable. So, there's no telling that I'll be in better shape in one year. All I have, for sure, is now. And I'm in the best shape I've ever been in my whole life. If I put it off, I'm taking a chance that my liver disease will progress to the point of being unable to undergo an elective surgery like that. The recovery period will be 3 months and then I can slowly start adding in my normal routine (which includes running). And I have hopes to run a 5K Zombie run on Sept 1st. Additionally, I'm sick of being down for a week each month in the summer and telling my kids I cannot take them to the pool for an entire week.
As far as the other stuff, the studies I read about PSC (the liver disease I have) have demonstrated that there is no effect on the disease regarding the diet. And, I have to say that none of my blood values have been affected by the diet. Well, except for the IgG gliadin. My Sedrate (chronic inflammation) is still high, as are other inflammation markers. My abdominal lymphnodes are still just as inflamed as they were pre-diet. The diet has had no effect on anything except my IgG gliadin and my villi. That is it. I have so many docs and so many tests to monitor all the crap I have. On the other hand, I am quite lucky in that over the last 4 years, I have remained stable. Although nothing has really improved, nothing has gotten worse either.
Even this rash is mild. There may be a total of 10-15 bumps that are spaced in groups of 4 or 5. The doc mainly asked about my symptoms. She does know that I'm off the diet. And, this rash started on the 29th, I believe. I went off the diet on the 23rd. I did mention to her about the DH, but she didn't think it was that, and I'm assuming that was not only due to the presentation but also due to the symptoms (pain versus itching).
There was no biopsy taken, but these don't itch. They just aren't healing normally. They aren't oozing or anything, but if it were a normal scab, they'd be done and over with by now. Instead, they are still there. They hurt more than itch. And, it's not the skin that hurts. It's a deep hurt, like a bruise or something. Like someone hit me in the rib with a small rubber hammer. I figured they were bug bites since they don't have a rash-like appearance at all. There's just 4 little groups (one on my back, one on my flank, one on the abdomen, and one just under my breast - all only on the left side). Honestly, if you looked at it, you would not think rash either. You'd think a few ants had their way with me.
.....aaaaaand now, the doc says those painful "bites" along my bra line are not bites at all, but SHINGLES. WTF? I'm more stressed about all of this than I realized. It upsets me more that I'll probably have to put off the biopsy and also possibly the hysterectomy that I had scheduled for this month. Freakin' A.
Funny you mention this. Right after my diagnosis of celiac, I wrote hate mail to my body. On facebook. I won't write what I posted on here because there's a lot of "colorful" language.
And, I feel terrible for airing my trials when I KNOW so many of you here have been through a much more nasty hell than I've ever experienced. But...it's my journey, I suppose. And I can only draw from my own experiences and, hopefully, learn from others.
I cannot tell you how much I appreciate all who have responded. I've been in a mentally dark place, and I don't wish to go back. I'm not fully out of it, but at least, I'm now in a place where I can hear what people are telling me without having it fall on deaf ears (which was the state I was in last week).
Thank you, again, everyone, for caring and taking the time to write.
I have to admit that I'm surprised that many of the responses are not what I expected to hear. So, I have been proven wrong in assuming I knew what all of you would say.
I've been given a lot of food for thought. Not just from you all, but also from friends.
I'm just trying to make some sense of my feelings. I know, rationally, what the correct thing to do is. I also know what I would tell my children. I know I need a new perspective, and, really, that's what it all boils down to. I am capable of doing the diet and sticking to it stringently. It's a matter of having the will to do it. It makes no sense that I'm doing so much to try to temper the one disease I have absolutely no control over and give in to the one I have full control over. It's not logical in the least.
I talked to a friend today who cried about her frustration and sadness about two people in her life that are making choices that only hurt them in the long run. And I could see my husband in her tears. She wasn't even talking about me. But the theme was the same nonetheless. I'm not one to believe in signs or fate or the intervention from a God. But I found it uncanny the running theme of our discussion. I felt horrible for her pain, yet could not come up with a way to make her feel better since I was that person she was describing. I am the one making a choice to cause harm to myself in the long run.
I just need this to be a choice I make for myself, I guess. I need to look at the food, not at something that I can't have, but as something I don't want. There is a difference between the two. And, yes, it's a matter of perspective. It's going to take me a while to get there. Months, maybe. But I'm feeling more hopeful that I can be in a mental place to make a healthy choice for my body.
I truly appreciate all the responses because it has really helped me to think through this.
Mainly, the freedom. The freedom to just eat whatever is available. I have 3 young kids, so picnics, family gatherings, PTO meetings, etc are frequent. I stayed home all summer because I cannot mentally handle being around food I LOVE, but cannot HAVE. I have no desire to bring my own food in a bag while others are enjoying a buffet of food. I skipped DH's company party because of celiac. I skipped too many picnics to count. I skipped too many club meetings because cake was being served. I became a hermit because I cannot pretend to be happy and I cannot "suck it up."
I walked into MIL's house for dinner and there were dinner rolls on the table. (I think I wrote about this before.) I about near had a mental freaking breakdown. It was that incident that got me on prozac because I had visions of cutting my arms and taking oxycodone to cope with being in the same room as a dinner roll, let alone watching people eat my most favorite of foods in my presence. It was a horrible experience and really set the stage for a great deal of fear when it comes to food. I feel like I cannot trust myself any more because I don't know how well I'll handle surprises like that. I wasn't expecting to have such a strong and psychotic reaction to being in the presence of dinner rolls. And this was only a few months ago. August or September maybe? As a result, I don't trust myself to go anywhere that I'm unfamiliar with and certainly won't be going back to MIL's house for any sort of dinner while gluten-free. I miss dinner rolls. I miss cinnamon rolls. I miss being able to walk up to a buffet and just eat. I miss the ease of eating out. I miss feeling like a normal healthy human being.
yes. I know. I've called 3 different therapists and have reached dead ends. One wasn't accepting new patients. The other isn't a participating provider. Another hasn't called me back.
I really DON'T want to deal, though. I don't WANT to face my uncertain future. I don't want to focus on the shitty hand I've been dealt. I can't imagine any good coming from it. Nothing but feeling impotent. And fear. I don't want to face my fear.
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!
And, yes, I think that is what I'm saying. I don't think I've acknowledged my liver disease. My doctor was actually somewhat surprised (and noted that during my office visit with him) that I didn't break down in tears at my liver diagnosis. I want to live in ignorance. And the celiac does not allow me to do so because it is constantly on my mind. I adhered strictly to the diet. I always had something available for me to eat. Nevertheless, I always felt "without."
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?