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
It's interesting to me how defensive people get about their coffee!
The same site that mentions his degree ALSO states that the university was accredited when he received his degree, and lost its accreditation 15 years after his graduation, after an administration change.
But it wasn't Cherniske who convinced me. It was all that pesky science he used, and the many, many studies he referenced. I paid most attention to the parts regarding gut and immune problems.
If it isn't for you, or you're too addicted to even consider it, that is nothing to me. I posted because I thought it might help someone. But you don't have to make ugly comments or try to discredit it based on faulty information. You could always just IGNORE the post, you know. You might be discouraging someone else who would really benefit from the info.
I'm willing to try anything to improve my health. I'm not going to compromise it by clinging to a drug addiction. If it turns out going caffeine free doesn't help my stomach, well, at least I'll be sleeping better and have whiter teeth!
PS... Out of curiosity I searched Pubmed (referenced above) and found SEVERAL published studies that say caffeine affects the immune system in numerous negative ways...
I thought I was getting mystery glutenings all the time, too. But it turns out I have secondary food sensitivities to foods I was suddenly eating a lot more of. Sometimes these mimic gluten in my body's response.
A recent gluten convert should not be eating dairy anyway, or Should at least be limiting it. Either way, I think you should look into other things before you bad mouth a good company. BB never bothered me where gluten was concerned, but I checked every single flavor.
Right now I am reading a really interesting book called Caffeine Blues.
What has gotten my attention is how frequently the author goes back to auto-immune problems being exacerbated or even CAUSED by excessive caffeine.
It works two ways - caffeine exhausts your adrenal glands so that your body either can't respond to allergens or over-reacts. It also destroys the mucosa lining in your gut ("leaky gut" anyone?) so that food gets through the lining under-digested and your body responds to it as an allergen.
There are other things, but those are the two things that stuck out to me.
More than anything, though, I'm really concerned about my own auto-immune problems and all the various ways caffeine could be making it much, much worse. Not to mention the dependency on it means that I have such terrible problems getting out of bed in the morning, so I don't get up early to exercise, which contributes to feeling even crappier and having more weight issues.
The authors points out study after study that shows there is NO "moderate" amount of caffeine. Different people are affected in different ways, but no one gets off scot-free.
Today I'm going to start working on going caffeine-free. It takes three weeks to rid it from your system, according to this guy (that seems to agree with my previous experiences), so sometime around the New Year I'll try to report back on how it has gone - how it has affected my stomach problems, energy problems, etc.
I'm hoping to draw some attention to this, since EVERY person on this board has an immune problem! And hoping to hear from anyone here who has gone caffeine-free and seen an improvement. Wish me luck! And I'll report back.
In the meantime, the book is Caffeine Blues by Stephen Cherniske. I'm in no way affiliated with the author, etc. I read many nutrition & health books, and find most of them to be total junk. I only pay attention when the facts presented are backed up by heavy research, and this book is full of HUNDREDS of references to research published in respected journals. Otherwise I wouldn't give it a second glance.
I was having terrible nausea and recently found out through testing that I have secondary allergies to corn, milk, and a couple of other things. In my case it was the gluten-free cornflakes for breakfast that were making me sick every day.
If it is your meds, talk to your doctor about necessary they are, and whether taking them at a different time of day or under different circumstances would help.
This is not about me, but rather the "friend of a friend". Unfortunately I don't have much more information than what I give you here.
A young teenaged boy who was formerly very athletic developed severe neurological problems. Now he has to use crutches to walk.
He has been tested for everything under the sun. The only thing that came back positive was ONE marker for Celiac's.
A second doctor told his parents that it didn't matter, not to worry about gluten, that it was something else and they would keep searching. They still have no answers at this time.
What I'm wondering is - I had assumed that any Celiac's markers being positive meant you DID have it. I'm quite worried that one really ignorant doctor could ruin this young man's life. I wish I knew which blood marker had been positive, but unfortunately I don't know that much.
Can some of you more experienced chime in? Is it possible to have a positive marker and not have Celiac's? Or should I pass along how dangerous this is, and that they should seek another opinion?
You are getting some really interesting replies from people who apparently have much worse gluten problems than you do.
I will liken this to my problems with dairy. I KNOW that it gives me gut problems & acne. Is my face clear right now? NO. I have about five knots on my face because I just CAN'T HELP MYSELF. And this morning even the dog ran away as I'm sitting on the couch polluting the atmosphere with my stomach problems...
With gluten, there's no way. No temptation is worth getting a migraine and looking nine months pregnant for a week and feeling like I've been drugged for a few days.
But with dairy? Ugh.
If gluten for you doesn't invoke a really serious reaction, I can totally understand why you have trouble like this. Unfortunately, it is doing so much harm to your body. So much more harm than my dairy does.
I wish you the best in not giving in - but don't get too "down" on yourself. Every day you go gluten free is a success. Focus on that, and not on when you slip up.
When I first took gluten out of my diet, the most minor exposure would send me to the bathroom for an entire day, plus I would have a migraine. This from a woman who spent sixteen years with constipation and bowel obstructions!
I've been gluten-free for about a year now (it flew by!) and now it isn't nearly so bad. Getting glutened makes me miserable, but it isn't debilitating like before.
A friend of mine IRL is still debilitated by it, but I think she is much worse than me. Everyone is different. As your body heals, it will continue to change. I hope that you are like me, and your body will settle down and just complain a little bit when you get glutened.
What I do know is that the cleaner your diet is, the easier it is for your body to heal. Don't go overboard with gluten replacements, which are mainly rice, tapioca, bean flour, potato flour, etc. Very low in nutrition. Your body has been depleted for a long time. Focus on lots of fruit & veg, replacing those depleted vitamins & minerals. You'll heal faster & better. Plus you'll be focusing on the positive rather than thinking about how BAD most of the gluten-free replacements are! LOL
Hi - this is more of a report than a request for help. I had just submitted a note to the site letting them know I haven't been able to log into the forums for weeks now. Right after sending it, I wondered if the problem was my browser.
Lo & behold... I opened up the long-abandoned Internet Explorer & the forums are working FAST and I was able to log in finally.
In Chrome the forums are slow, and login (for me, anyway) was impossible. The operation "timed out" every time. I'm not sure if Chrome had an update, or if the forums did, or what - because Chrome worked fine until recently.
I'm adding the topic for future reference, and for the staff to look into, if they choose to do so. For now I'll just open up IE when I'm visiting this site. Thanks!
You're in the angry phase, that's what is wrong with you!
I was happy to be well when I found out that I thought I would never have an "angry" phase. Wrong! I got glutened at a restaurant and the frustration took over for a while. Eating bread or something straight-out would have made me too sick, but I took lots of chances and did gluten myself by mistake several times.
Being gluten free is
It takes over everything! You can't just have a cracker on your way out when you're starving. If the store runs out of the ONE brand of whatever-it-is you can eat, you feel like snatching out of other carts and yelling, "you have a choice! I don't! Pick a different kind of potato chips!" Eating out is a minefield. The kids are constantly into MY stuff, hubby is not careful with the bread, I can't use the toaster... agh!
I will never, ever be able to return to Bernalillo, New Mexico and have the most fantastic green chili enchiladas ever conceived by man, my most favorite food ever ever ever ever. That is truly heartbreaking. It makes me want to cry, right now.
The good thing is... this will pass. If you persevere, this will go away, and besides the occasional moment, you'll get used to it and stop being so mad. You'll find new favorites and frequently manage to forget the old ones.
It's like a phase of grief. It seems stupid, but we have to put down a whole way of eating, a way of interacting socially, and pick another way that is hard and frustrating and annoying. Of course we grieve a little, even if it seems selfish and trite.
So grieve, and try not to hurt yourself too much with it. Tomorrow is always a new day.
I noticed the lactaid, and noticed the "leaky gut" thing in your signature, and I am going to ask if you've thought of going dairy free.
Celiac's is caused by a immune reaction to a PROTEIN. My daughter had a reaction to cow's milk as a baby - it was not to the lactose, but rather to a protein in it. Lactose-free didn't help her (we tried that first).
I was thrilled to think I could go back on dairy after being gluten free for a few months, and it didn't give me any stomach problems - but it did (apparently) cause me to break out in acne. That is NOT a lactose reaction! That is another immune problem. So no more dairy for me, it seems.
To me it sounds like you still have a problem you haven't sorted out yet. Whether it's dairy or something else.
How I've dealt with eating out is that I figure out what I can eat at every restaurant. My husband loves Chili's, for example. I can have the salmon, or I can have the house salad with no cheese & no croutons and the house vinaigrette. I don't even have to look at the menu - I decide ahead of time if I'm in a fish mood or not. I do this with every restaurant. When in doubt I have a salad with oil & vinegar dressing.
We already know our options are limited. It's much better to know ahead of time & not torture yourself with the thought of that cheeseburger, or worry about what is in that dipping sauce.
The biggest difference now is that instead of eating out being a treat, a chance to splurge, it's the time when we eat more carefully, and home is where we splurge and have safe treats. It's just a reversal.
Also, when I feel really badly, I do a week on my old elimination diet to clean my system. Rice & raw veg and fruit (no high-acid foods like citrus or tomatoes). It never fails. If you get this all figured out, you should be able to eat, even though it's restricted, without fear or constant problems.
Hi - I just replied to you about the hair loss! Just realized both topics were you.
I've never been tested. After years of being told a million different things - IBS, hormonal problems, HYPOCHONDRIA (that is my favorite, told me by a doctor who suggested that if I just went on Prozac I would stop trying to make myself seem ill, AHEM) - I had a deep distrust of doctors.
After the stress of an overseas move, my body just broke down. I couldn't find a doctor and got so weak and dehydrated that I couldn't walk on my own. A pharmacist (which can prescribe everything but painkillers here) put me on a strict elimination diet and prescription-type hydrating fluids, and told me I must go to the ER if I wasn't better in 12 hours.
I was so sick then that I did three days on plain rice. Then I added in salad vegetables, one per day. By day four, when I was eating nothing but rice & cucumber, I felt AMAZING. Fantastic. On day 8 when I ate a bite of something with bread in it and completely relapsed (complete with neurological symptoms, including a migraine), there was no going back, ever. We live in a country where medicine is fairly third-world, so my husband begged me not to risk the endoscopy. (One of his coworkers died of complications having pins put in his broken leg.) I didn't care. When I have gotten glutened, it has been so obvious so fast that I will not challenge for a diagnosis - I'm not sure I would survive it!
I told you in the other post that I was also low on Vitamin D. I was chronically tired, had terrible stomach problems from acid reflux to terrible pain & bloating, to excruciating constipation. The kind where you wish you were dead every time you have to poo. And migraines, dizziness, muscle aches like I was always on the verge of "coming down with something". I had joint pain. So many different things that I wouldn't tell anyone everything that was wrong with me, because it DID sound like I was a hypochondriac. Sometimes I even wondered myself, if I was just crazy and didn't know it.
And EVERY. SINGLE. ONE. has resolved completely by going gluten-free. I haven't had a migraine since that day I realized it was a gluten problem (that I mentioned above). There was a time when I could not even drive to the store without a migraine pill, because I never knew when one might hit me suddenly & I would not be able to drive myself home. And now not a single one in many months!
So I told you all of this to say...
- the tests are inconclusive
- doctors know little about this problem
- it could be celiac
- it's worth a try
The advice you got to not go gluten free if you plan to test was very good advice. If you think it might bother you later to not know "for sure" - get tested now. But I would suggest that as soon as they have done the tests, go gluten free anyway, just to see. The tests aren't terribly conclusive. They could be false negative & you should try the diet anyway, and even if they are positive, you'll be already on your way to good health.
Best wishes to you - I hope you find an answer soon.
My hair was much thinner before I found out, and grew very slowly. It's healthier now & grows pretty fast.
Also, I had vitamin D deficiency. My doctor was stumped and insisted I take a huge supplement - and said I needed to be outdoors more often. I was already outdoors for 1-2 hours per day! My body just wasn't processing it properly. I'll be tested soon & see if that has resolved itself. I never took the big supplement because I was worried what would happen if I ended up with too much of it - that can be really bad. Vitamin D doesn't just flush out of your system like other vitamins.
Are you taking any other supplements? If you're taking anything in megadoses, make sure it might not be the cause.
And have you done a gluten-free trial with a challenge to see if it is a problem? If you don't have gut problems, it might be hard because my hair didn't improve for a few months - that was just a happy side effect I noticed later.