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
In November I came to Hawaii (Waikiki) to present on Celiac Disease at the Pacific Coast College Health Association Conference in Honolulu. And trying to find info on where I could get gluten-free food was a *joke* - So, now that I'm back for a couple weeks (met a cute surfer boy last month! ) I thought I'd give you updates as I find places to eat!
Stores: "Down to Earth" is a health food store with lots of gluten-free and dairy free stuff - but, for all you carnivores out there (like me!) keep in mind that it's totally vegetarian so you aren't too likely to find any gluten-free sausages, shelton's products, or fun stuff like that. Everything here is madly overpriced so.. plan on that too if you are coming on vacation (and I thought things were expensive in Utah! Man!!)
Another store is "Vim & Vigor" in the Ala Moana shopping center. They have a lot of gluten-free stuff also (not as much as Down to Earth but the store is right there in the big shopping center, as opposed to in the middle of nowhere like Down to Earth). I was a bit disappointed that they didn't have something I wanted and then (amazingly!) found it a few stores down at "Foodland" (keep in mind that not all Foodland stores carry gluten-free products!). So... if you're in the Ala Moana shopping center - you will find food! Yay!! The place is huge though so here's a map so you don't wander around for hours without finding anything (like I did when I first went there!) http://www.alamoanacenter.com/mallmap.htm
The best store I've found is the Umeke market (http://www.umekemarket.com/) - (maybe it's because it's the cleanest and least frantic looking) Anyway, they have a great selection of gluten-free foods. But - again, out of the way.
Dukes: (right on Waikiki beach) had a divine baked fish dish. They don't have a gluten free menu but I asked a lot of questions and basically told them I would die if I came in contact with wheat and the servers where fantastic. I took a chance on the baked fish dish because it was cooked in a pan all by itself and wasn't too likely to come into contact with a contaminated grill. It was sooooooo good!
Yard House: I was shocked when I asked for a gluten-free menu and they actually had one. Be careful of the servers though and always cautious. They brought fries out on my supposed gluten-free plate even though I'd read on the gluten-free menu that the fries weren't gluten free. I'd ordered the spicy chicken "sandwich" (without bread!) and it was tasty - I didn't eat the fries and didn't get sick
Roy's: I haven't actually eaten here yet but stopped in and talked to the servers who know all about gluten & food allergies. I've heard the place is great but.. again, everything is pricey!
There are also Outback Steakhouse & P.F. Chang's establishments here. So... that's always comforting, eh? (haha - sorry, the surfer boy's Canadian - I think it's rubbing off on me!)
OH! And don't forget sushi! Bring your own soy sauce - you wouldn't want to miss the fresh sushi here! Yum!
I'll keep you updated as I find more food! Love to you all!
Well... I have no idea what is going on now! These are results I got from my doctor today (regarding tests I had Monday):
Complete blood count and iron studies looked good. No sign of iron-deficient anemia.
Liver enzymes are normal.
Thyroid screen (TSH) is normal.
Magnesium is normal.
B12 and folate are normal.
Vit E, A, and D are normal.
Tissue transglutaminase IgA is 3.9 (normal < 7.0, it was 23.4 when we screened and detected celiac disease in May 2005).
So... I'm interpreting this to mean that I'm not getting gluten in my diet.
What could be wrong?
I *did* (however) discover that both my birth control pills (ortho tri-cyclen lo) and allergy medication (Zyrtec) have a lactose base, and yesterday was the first day I had a normal bathroom experience. (yay!) So, the dairy hit that I had on Christmas was enough to wipe them out, and then the lactose was enough to prevent healing..? I don't know.
My friend thinks that my body is very passive aggressive - "If you're not going to take care of me exactly as I want you to.. I'm just not going to heal! Ha! "
I think she understands, since she has Celiac too Maybe all of our bodies are passive aggressive
Anyway - I'm open to ideas if anyone has any! Still don't know why my villi are flat and my gastroenterologist is out of town! (Before he answered *any* of my question! Punk!)
The good news is that my doctors office called this morning to tell me that the biopsies were benign. (whew!)
The bad news is that I *still* haven't talked to my doctor (gastro) and when I called back to ask questions, they said he was out of town until next week. (argh!!!)
So, I went to my general health practitioner with my book on Celiac Disease and the article (from celiac.com!) on Refractory Sprue by the Mayo Clinic doctor. She ran a lot of tests (so many blood tests that they made me lie down for twenty minutes after because they thought I was going to pass out!) - including a new tTG test, a bunch of vitamin/mineral tests, thyroid, etc.
Hopefully the tTG will tell me if there is gluten in my diet somewhere that I don't know about. I hope that test will work, anyway. Theoretically, I've been gluten-free since May 11, 2005 - almost two years. So... what the hell??
Hey, I haven't read all of the posts on this topic - but thought I would add something (forgive me if you've heard this before). I had a wicked yeast infection & obviously intestinal candida for over 18 months. What finally helped me was a no sugar, no grain diet, lots of probiotics, fish oil (3-4 teaspoons/day), and a 4 month run on Lamisil (the anti-fungal that is commonly used to treat toenail fungus). If you know that your liver is already having problems, obviously this isn't the way to go. But my doctor checked my liver function every month and I was fine. He said that he'd heard of people having liver problems with it - but had never actually seen it in his practice (and he was very strict on testing).
I know it's a bit out there - but you might want to consider it. I know that Candida is awful, and I had tried everything too.
About Candida - yes, I did read the link - and find it very interesting. I had a yeast infection for 18 months - and Candida for who knows how long.
I'm still waiting to talk to my gastroenterologist about the results. I haven't had the chance to talk to him for even a second after the procedure. And, obviously, I am very anxious. Hopefully I will get a call from him soon.
I spoke with my general practitioner - after emailing her the results - and she said that, it looks like refractory sprue. I'm not sure how familiar you guys are with that so I'm going to quote the section on it from the book, "Celiac Disease" by Peter Green.
" I've been really good about the diet - I watch everything I eat. I do eat out a lot, but only where I know I'm safe... But my last biopsy was still totally flat. I don't know what I'm doing wrong or what more I can do. Maybe stop eating. (Anonymous, 50)
Primary refractory sprue is the term used for patients with celiac disease who have ongoing diarrhea and persistent villous atrophy after going on a gluten-free diet for at least six months and in whom pancreatic insufficiency, bacterial overgrowth, microscopic colitis, and small intestinal lymphoma has been ruled out. This is mainly a diagnosis of exclusion. It is not just the persistence of villous atrophy in a patient who is otherwise doing well with the diet.
Some patients initially appear to do extremely well on the diet and then relapse despite compliance. This is secondary refractory sprue. In these patients, refractory sprue develops during the course of celiac disease, but in others the cause is unclear. Studies have been done to determine whether these patients actually have celiac disease. In terms of pathology, both conditions are similar.
Refractory sprue can have serious consequences - one is malignancy. Some patients with refractory sprue have abnormal lymphocytes (white blood cells), called clonal lymphoctyes. Patients with refractory sprue are also seen with clonal proliferation. If clonal lymphocytes are present, patients may progress to lymphoma.
Patients with refractory sprue may need hospitalization and treatment with intravenous fluids and nutrients as well as antidiarrheal agents. Many receive steroids, immunosuppresive therapy, and antibiotics.
After eliminating any other possible reasons for the condition - double-checking the diagnosis, ruling out dietary indescretion and bacterial overgrowth, and using pancreatic supplements - drugs such as cyclosporines and azathioprone (Imuran) are used as treatment for patients with refractory sprue. They have fewer side effects than steroids."
Needless to say, if it is refractory, not happy news. I do not have pancreatic insufficiency, as I have taken pancreatic enzymes in the past with no benefit. I was tested for bacterial overgrowth last year and that's not it. And I'm pretty sure that I don't have microscopic colitis. (Wouldn't I know on that one?) So, I'm waiting to get the small intestinal lymphoma ruled out. (Yikes.)
Obviously there could be other food intolerances that I don't know about. But I do not have active Candida now.
What worries me the most is that I haven't had a reaction (i.e. "glutened") since last June. And I developed a pretty bad depression in August - which (now that I know what's going on with my villi) leads me to believe that this has been going on for some time. If I *do* have refractory sprue, it must be the *secondary* refractory sprue, because I was doing really well for a while. But in August, for whatever reason, I started really breaking down and could hardly function. By November, I was crying every single day (to the point of sobbing most days). I started taking anti-depressants again November 1st (Wellbutrin).
I really don't know what is going on now. I do believe that Candida can play a role - but I don't think that's the case for me now. (I even posted on the Candida link a long time ago - not sure of the forum link, but here is a web page that I linked to: http://www.denvernaturopathic.com/news/celiac.html ) (Please read that if you haven't already!)
Thank you so very, very much for your support. Sorry I haven't responded yet - I've been slammed with work & school & dating & trying to get my living space organized (I was living with my boyfriend for almost 3 years - left him on Christmas, possibly -in part- because of this active celiac business that I didn't know about).
You guys are wonderful. Thank you thank you thank you!
I know that villous atrophy can occur due to casein. I also found out that I'm seriously allergic to dairy (plus beef & gelatin) a couple of months before I was diagnosed with celiac disease. I also react to eggs and sesame - but not so intensely. I had the ELISA blood testing in March 2005. Since then, I have RARELY ingested any sort of dairy product. The last time I "cheated" with dairy was on Christmas, when I had some cheese (and became really emotionally upset) (but I also broke up with my boyfriend that day so it could have been that!) - I would think that the villi would have regenerated by yesterday, if it was the dairy.
No more "cheating" though. I am more than a little terrified of the cancer risks I'm looking at.
I thought I was doing so well I *never* risk exposure to gluten. I emailed my primary care doctor with these results but haven't heard from her. She's wonderful & brilliant, so I am very anxious to speak with her.
This morning I had an endoscopy and these are the findings:
The examined esophagus was normal.
The Z-line was irregular and was found thirty-six cm from the incisors.
The entire examined stomach was normal.
Atrophic mucosa was found in the 2nd part of the duodenum. Biopsies were taken with a cold forceps for histology.
The duodenal bulb was normal.
So... I don't know what to think. I have been gluten free since May 11, 2005. And I am *extremely* careful about it. I actually now give presentations on the gluten-free diet. Nothing that I eat, and no medication that I take, is anything where I haven't contacted the manufacturer. I check ingredients in a serious OCD sort of way. I don't eat where I am not sure that it is safe.
What is going on with my villi?
Since the beginning of November, I have had "esophageal spasms" - and the main point of the endoscopy was to try to determine what is causing that. The only thing that stops the intense pain of the spasms is a calcium channel blocker called "Norvasc" - and when I miss *one* pill, the pain is unbelievable within 24 hours. But - after the endoscopy, I received a printout that said, "No cause found for symptoms. Await pathology results."
Anyone know what the Z-line is, or (more importantly) what the significance of an irregular Z-line found thirty-six cm from the incisors is?
I am terribly, terribly afraid that my osteoporosis is never going to improve if my villi aren't healthy!
I came home from the appointment and just cried. I am so careful, I am cautious of every single thing I put in my mouth. Why isn't my body healing?
Here is some info. on the possible relation between celiac disease & elevated pancreatic enzymes. (Just found this abstract, thought I would pass it on)
Title: Unexplained elevated serum pancreatic enzymes: A reason to suspect celiac disease
Author(s): Carroccio A, Di Prima L, Scalici C, Soresi M, Cefalu AB, Noto D, Averna MR, Iviontalto G, Iacono G
Source: CLINICAL GASTROENTEROLOGY AND HEPATOLOGY 4 (4): 455-459 APR 2006
Abstract: Background & Aims: The frequency of elevated serum pancreatic enzymes in patients with celiac disease (celiac disease) is unknown. The aim of this 'study was to evaluate the serum levels of pancreatic enzymes in celiac disease patients. Methods: Serum pancreatic isoamylase and lipase levels were assayed in 90 adult and 112 pediatric consecutive celiac disease patients at diagnosis and after 12 months of gluten-free diet (GFD). Serum elastase and trypsin levels were assayed in a subgroup of adult celiac disease patients. Pancreatic ultrasonography was also performed. Results: Twenty-six adult (29%) and 29 pediatric (26%) celiac disease patients exhibited elevated values of serum pancreatic amylase and/or lipase; trypsin was elevated in 69% and elastase in 19%. The frequency of elevated serum pancreatic enzymes observed was identical in the patients with "typical" and "atypical" celiac disease symptoms and in the asymptomatic patients. Most of the elevated values were lower than 2-fold the threshold limits. Elevated pancreatic enzymes were not associated with alcohol consumption, drug use, presence of abdominal pain, or diabetes mellitus. Abdominal ultrasound scan showed no abnormal findings in the pancreatic region in any of the celiac disease patients. After 12 months of GFD, pancreatic amylase was elevated in 3 cases and lipase in 2 cases; these patients had not strictly adhered to the GFD. Conclusions: We demonstrated a frequency of about 25% of elevated pancreatic enzymes values in celiac disease patients, including subjects without gastrointestinal manifestations and apparently asymptomatic subjects. The finding of elevated serum amylase or lipase level, in the absence of signs of pancreatic disease, would appear to suggest a need to screen for celiac disease.
Thanks for your encouragement! I need to get more involved in this board again. I miss having all of these great people to talk to who actually know what I'm talking about
Once this semester is over (mid December) I'll come back to the board more often and try and make myself useful I really have learned so much about celiac. It's kind of wild for an OCD person like myself to have (nearly) full access to medical journals. But hey, at least I'm learning!
Hi there I am doing a presentation on Celiac Disease at the Good Earth Natural Foods store in Sandy on Monday night. I know this forum was so much help to me when I was first diagnosed (and still is when I have questions) and I thought I would announce this here. Hopefully, I will be able to add to your understanding. (Which I know is vast if you spend much time here )
I'm currently a student at the University of Utah who is studying Health Promotion & Education. I'm also someone with Celiac Disease who has a mad fascination with it I've read at least 50 peer reviewed medical journal articles on the topic, read many books, done numerous presentations on the disease (in my classes) and have learned a lot of medical information about our disease and what happens - or how likely things are to happen.
Oh, and I know this is going to be at a natural foods store, but I promise not to tell you to eat spelt
I hope that someone from this forum will come!
Here is my little anouncement :
* Living Well with Celiac Disease!
On Monday, November 27th at 7:00 pm, Michelle Larsen (University of Utah Health Educator and a woman with Celiac Disease) will offer a presentation on the gluten-free life. The meeting will take place at the Good Earth at 7905 South and 700 East, in Sandy.
We will discuss:
- Gluten-free supplements & medications
- Complications of Celiac Disease (Neurological, Autoimmune, Osteoporosis, Dermatitis
Herpetiformis, Emotional, etc.)
- The Genetic Component of Celiac disease
- How gluten affects your intestinal tract
- Prevalence of Celiac disease