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
A few years ago, I was facing a very frightening diagnosis. In the end, it turned out that I didn't have the disease after all - but when the doctor raised the possibility I quite frankly freaked out and stayed that way for weeks. Barely could function.
He referred me to a therapist who specializes in helping people cope with medical difficulties - cancer, diabetes, mental illness in themselves or a family member, severe allergies, that sort of thing.
I only met with her twice, but it was extremely helpful - and I was able to put her concrete suggestions about coping with overwhelming emotion to work in other parts of my life!
It was just non-threatening talk with some venting on my part, some good listening and acknowledgment on hers, and some encouragement and ideas for how to cope.
Jason, maybe if you have a heart to heart with your doctor about this, s/he could refer you to a counselor like that?
Went to a friend's birthday party last night. The hostess, bless her heart, greeted me at the door almost in tears. "I didn't know what you could eat and I was afraid you'd be upset if I asked you but now I'm afraid there's nothing here you can eat. You can eat a hamburger can't you? Please say you can."
So, of course, I did.
The hamburger itself MIGHT have been ok (but it was of the pre-formed frozen offbrand Bubba-burger sort) ... Cooked on a grill with multiple seasonings and previously toasted bread. And hot dogs.
But what could I do? Just eat a slice of tomato and smile? She'd have spent the evening so upset over it all.
Next time someone grills out, I'll volunteer to bring my own hotdogs (cook in tinfoil) and a big bag of gluten-free chips to share.
But this time, I'm stick with raging nausea, a terribly hurting gut, horrible moodiness, joint pain, itchies, malaise, and a headache right behind my eyes.
I know that the goal is to never get glutened, but I also know that unless I move to a cave somewhere, this will happen again. Is there ANYTHING one can do to help get past it quicker?
I considered eating and then (I know it sounds gross) making myself throw up later. It wouldn't get all of it out, but some?
How about activated charcoal? Huge amounts of Vite C? Alka-seltzer?
There's a few recent discussions on here about PCOS+celiac ... but let me add my current personal experience to the list.
A ways back the docs suspected PCOS and so sent me to a gynecologist who confirmed the dx. My primary symptom labs-wise is outrageously elevated testosterone. Despite an assortment of meds, it just kept climbing higher and higher.
In addition to this, my thyroid levels kept getting more and more hypo- my last TSH was 91.
Fast forward. My research never found anything conclusive but I kept seeing links, nuances, hints, that both thyroid and PCOS have a gluten intolerance link. I'd been gluten-free years before, but after a doc told me I was not celiac, I resumed eating gluten. Most of my current health probs showed up in the 2.5 years or so I've been back on gluten.
August 1, I decided, "Hey - if I'm suspecting a link, I should go gluten-free just for a couple weeks and see what it does to the labs."
I saw a new endocrinologist on 8/18.
My celiac bloodwork is negative (she's sending me for biopsy)... BUT...
- my testosterone level is now actually slightly low (and my cycle this last month was the most normal it's been in years).
- I'm losing weight rapidly (17lbs total so far) when I was unable to lose weight before no matter how much I dieted.
- My stomach issues are gone.
- I have boundless energy.
- She's going to re-check my thyroid in about 3 weeks to see if that # is normalizing now too... we suspect it might be!
So - based on this, she's put in my medical records that I have a severe allergy to gluten and under no circumstances should I ever eat it again - regardless of what the celiac tests show.
It'll be interesting to see what bloodwork turns up in a few weeks!
I think the first thing I would try is using 2/3 tapioca to 1/3 cornstarch. The corn starch has a heavier consistency than the others, so it might be more like 2/3-plus-some and 1/3-minus-some to make it taste like the original.
It sounds like you're looking for more of a sit-down restaurant, which I can't really help you with... but I was in the Raleigh area twice last week and discovered that
a) the mall on 540 has a starbucks that still had quite a few gluten-free orange valencia cakes left
Five Guys, which is a burger joint with locations all over the area, made me a ROCKIN' hamburger and fries - all natural meat, and potatoes are the only things fried in the whole store so no CC issues with the fryer. (They do cook with peanut oil and serve peanuts in the store, so if that's an issue you might not want to go there)
I *love* SunButter!! It's made from sunflower seeds and is gluten-free and nut-free. It tastes looks and spreads almost like peanut butter... in fact, if you were to serve it to friends and say, "It's a gourmet peanut butter" they'd be delighted with it
I would be very, very careful about using other nuts, because the possibility for cross-contamination with peanuts is quite high.
Three (no actually 4) things I would do, if I were in your shoes -
#1 - try Olive Leaf. It's a supplement that my Mom uses; she hasn't had a respiratory infection in years. WalMart sells a gluten-free version of the stuff very inexpensively.
#2 - get checked for parasites; look at sites like curezone.com and humaworm.com and cross-ref that info with your doctor (and if he poo-poohs the whole thing, consider self-treatment)
#3 - ask for a referral to a doctor who specializes in immune system problems. Long-term antibiotic use when the antib's aren't working indicates problems of some sort - either you're on the wrong ones, or you're not fighting infection the way you should, or something is going on.
#4- Tell the doc that you don't plan on getting used to it, either, so he'd best send you to someone with a different attitude toward health and wellness.
#1 - Dr. Balen (endocrinologist) is in Greensboro, NC. I can post the name of her practice, phone #, etc. if anyone's interested. She's part of a largish conglomerate of docs of different specialties.
#2 - I'm 99% sure that she will be referring me to the GI docs within her team either to do more advanced testing for diagnosis, or if the labs come back positive, to check for cancer and other trouble.
#3 - I've only been gluten free for 18 days - she said generally speaking 3 months for it to be false-neg on the blood test. However if it's negative we're not stopping there, so it's ok.
#4 - I'm going to have to research on the 5-year endoscopy thing. I've never had a 'scopy of any sort and I'm hoping to avoid them as much as possible I try to balance my own health and sanity with what docs want to do, which might mean having one now, and then having one in ten years, or something... unless they can use the little camera, or MRI technology.
She did allude to "the longer one goes before diagnosis" and also "if you cheat on the diet" - she didn't say in so many words, but I have read that those people tend to be at higher risk for complications. Given that I'm pushing 40 (and pushing hard!) I'd definitely fall into the first category.
I am so encouraged by my appointment with an endocrinologist yesterday that I'm practically floating on air this morning.
I sort of unloaded on her - all the gastro problems, the off- then on- again gluten free lifestyle, the possible false negative blood test due to me being gluten-free at the time (she was outraged that a doc did that!)... the complications from the synthroid and the other doc's refusal to put me on something else...
And so here's what she's said -
#1 - a diagnosis of celiac disease is absolutely essential. She says all celiacs should have endoscopy to look for (lyphoma??) cancer of the intestines, and this should be done every five to seven years. She alluded to other potential complications but didn't say what they were.
#2 - Even if my tests come back that I am not celiac, I should stay gluten free for life. Period. No more arguing or going back and forth, and no more doctors telling me I'm off-base or silly or wrong, because *obviously* gluten is my problem. She's already put in my chart that gluten-free is a necessity for me.
#3 - She's going to arrange for a compounding pharmacy to make all my medicines - gluten-free and acacia-free (a binder that might be what gives me trouble with the synthroid). She might even be able to get them to combine everything into one pill (bliss!)
#4 - Despite other doctors looking at me like I just stepped off the spaceship, there IS a link between gluten intolerance (celiac and otherwise), thyroid disease, and PCOS. (She also knew that there's a LOT of overweight celiacs out there who lose weight once they go gluten-free)
This is what I was hoping and praying for!
So it leaves me with a question. Someone gave me a helpful list of tests that should be done, but I forgot to print it out before I left. What Dr. B ordered was a "celiac panel" -- is that the same tests? Or, when I go back, should I ask for more?
I was at the health food store the other day and discovered something called Job's Tears. They're a largish grain/seed looking thing... I actually thought that each grain looks like a cross between barley and a black-eye pea.
I inquired and the staff was pretty sure that it's gluten-free, so I decided pretty sure means "don't buy it yet". Researching online I find that they're not related to a barley at all and they seem to be gluten-free.
Anyone eat this? I thought if it cooks up somewhat soft but firm it would be a great side dish, or a barley replacer in stew.
That looks like the #1 possibility... tho my initial reaction would be "how". If I was gonna cook corn on a stick it would be in plain water with some butter or margerine. Cross-contamination, or maybe they put some boil (seasoning) in the water????? Lots of spices and seasonings have gluten and it's not exactly declared well on the labels.
The other possibility I can think of is that you cooked a gluten-containing food on your grill (er... barbie) previously, and tiny amounts remained.
There's a great list here on celiac.com of foods and ingredients to avoid - (back up to the main celiac.com page and it's linked from there) BUT you'll probably want something Oz specific (assuming you're Aussie because of the 'roo and barbie reference, but it's getting to where you can get kangaroo meat here in the US too <yum!>)