sandsurfgirl

Why does your nutritionist have you on a high protein diet? When you are healing the last thing you need is unnecessary restrictions. You need carbs and grains for energy!!! My nutritionist is a college professor in nutrition and she is against high protein diets for a whole lot of reasons, and for someone who has been sick those reasons are all doubled. No wonder you're so tired. Get off the high protein diet and eat carbs!

It's too late for a biopsy. You are already gluten free and unless you have zero gluten issues you will get very sick going back on gluten long enough for a biopsy. A biopsy is looking for  intestinal damage, which means you have to intentionally cause destruction to your intestines with gluten to get a positive. You have to eat a lot of it for many weeks to do enough damage to show up on those shoddy tests.

Eat healthy, whole foods, but please eat plenty of carbs to give you energy.

Healing takes time. It took me 6 months to have one symptom free day. Give it more time.

People with autoimmune disease (I'm going to assume you have celiac and the test was a false negative), tend to get dehydrated. I needed to replace my electrolytes for several months, I drank good old Gatorade and it helped a ton. I tried other electrolyte supplements and all of them made me sick.

Hang in there. It will get better.

This is the quandary that celiacs face all the time with ignorant doctors. IBS is a junk diagnosis. It's what all of us were diagnosed with. My GI doc told me there was no way I had celiac and it was IBS. He talked me out of testing and I suffered for 8 long years. Then an ER doc told me it was celiac and to get tested. My blood tests were through the roof.

I don't know what to tell you to do. That doctor sounds like yet another one who doesn't really know celiac. Gluten makes you sick. You have classic celiac symptoms. Why would she say it's not likely celiac? Kickbacks from the drug company to get you to take that IBS drug? A prejudice against celiac diagnosis?

To get tested you must be eating a ton of gluten. So you have to weigh the benefits versus the risks. Is it that crucial you have an official diagnosis from this doctor? If it is, then you need to eat the gluten, take copious notes to prove it to her and get the blood done. Trouble is, those tests are not that sensitive so you might still come up negative.

Enterolab is promising but as far as I know he still hasn't been peer reviewed has he? It all takes so much time and red tape for studies to be done too. And then there is the American know it all syndrome where we don't always take studies and testing from other countries into account because we think we have to invent everything for it to be valid.

I still wouldn't touch it. Too scary.

This stuff that contains gluten grains but supposedly is gluten free is being pushed on us and I don't like it. There are beauty products with hydrolyzed wheat protein that are being labeled gluten free, but I got the leave in conditioner on my hands and then ate and was glutened bad by it.

I avoid wheat, barley and rye like the plague. I don't care what their testing says. It's bad for me and I don't chance it.

Sea World does let you bring in food for allergies. The security person was wrong and doesn't know their policy. You should have insisted on speaking to management.

It's a stupid policy they have. Disney doesn't question you one bit. We have annual passes and always bring in food. They never say anything to us about it.

I would follow up by calling the managers at the park that you visited. Be very firm that you want them to make sure this is handled. Go as high on the chain as you have to go. Give them a description of the security person and the time you entered if you don't have a name. Then tell them you are extremely disappointed with your visit, you were starving all day. EMBELLISH. Tell them you had a headache and you felt nauseous from low blood sugar. Tell them it ruined your trip.

Then say "I'd like to know what you can do to compensate me for this. I think a free return trip would be a reasonable compensation."

See what they offer. Most likely they will offer you something IF you are firm, but not belligerent. Don't yell and scream or they'll say screw you. Just be firm, polite and business like.

In the future if you go again, go straight to a manager if you have a problem.

Dating is just plain hard no matter what your circumstance. It takes time and a bit of luck to meet someone you want to spend years with and are compatible with.

I can't fathom how anybody can be vegetarian and celiac. It would be so very hard.

My advice is to just date casually and not have expectations that are too high. There's that old saying that you find the right person when you aren't really looking and I think it's true. The right person may surprise you and end up being someone you wouldn't have thought you would date.

The biopsy results are 99.9 % accurate that's what I have been told by several nurses . I don't get how any celiac could have negative biopsy tests unless the doctor don't do the test right . Lately I read cross contamination or a coin sized amount of gluten can will cause damage to the villi for 6 months , so if people have eaten gluten there whole life the tests would see the damage .

Doctors and nurses will tell you all sorts of things but they are sadly WRONG. I wish I had the link to that article. It was something like only 30% accuracy on the biopsy precisely because they don't do it right, and because the test is inherently easy to screw up. Your small intestine is so many feet long and they take 4 tiny teeny weeny samples. Very easy to miss the mark. They also don't go very deep. One woman on here was part of a study where they used a camera after negative biopsy and then they found her villi damage much lower than the biopsy goes.

Then there are those docs who just don't read it right. Any villi blunting or damage means celiac and some of them look for all out war in there before they will give a positive DX.

The anecdotal evidence is a nuclear bomb to the 99% accurate b.s. There are loads of people with positive blood tests and negative biopsies. Then they come here crying and losing their minds because they were told they don't have celiac yet they are so sick or they improved on gluten free.

The celiac biopsy is a medical travesty in America. It's the "gold standard" becuase it makes the doctors so much GOLD! Why do a simple blood test when you can charge my insurance for a surgery? It's despicable that after positive blood tests they insist on biopsy to "confirm." It's a dietary change! They torture patients by keeping them on gluten and putting them through an invasive procedure for what?

Yeah nurses and doctors "say" a lot of things about celiac but stick around here long enough and you'll find that they are sadly so misinformed.

I for one hope you are right :l I know how I feel and it isn't good when I eat that crap!!

I tell everybody if you are undiagnosed or think you are "intolerant" please save your sanity and tell people you have celiac. The last thing you need is to defend your health decision or have people not take you seriously. Tell family and friends you had a blood test.

Have you been diagnosed with celiac? Have you ever been on the gluten free diet? It seems from your post that you are not diagnosed and you haven't been gluten free but are searching for answers. I'm going to answer you under that assumption so correct me if I'm wrong.

While you are eating gluten, celiac symptoms can wax and wane and they can move around your body. So you have tummy issues for awhile. The tummy issues go away but you start having headaches. Headaches clear up and you get sinus infections. Tummy problems come back mysteriously and you think it's dairy. They go away and you think okay that problem is gone. But the bronchitis starts or the anxiety attacks, or whatever odd symptom.

That is one reason celiac is so hard to diagnose. The textbook example rarely exists. There were so many times my weird stomach issues would go away and I would think I was cured of whatever that odd condition was. Then they would resurface mysteriously.

So it's not weird for a celiac to be able to eat bread and then all of a sudden not be able to.

If you are not diagnosed and have never been gluten free keep eating gluten and get tested. The tests are crap garbage and have way too many false negatives so if it's negative, give gluten free a try anyways.

But you have your diagnosis!! Gluten free has made a big difference for you. If you don't have a problem with gluten then you won't feel any different. My DH eats gluten free at home and eats gluten when he is out and at work. He doesn't notice a difference either way because he has no problems with it.

You need actual copies of all tests. I personally know people (and have seen it here on this board) who were told they didn't have celiac because the docs didn't know how to interpret the tests.

Any positive, even a slight one points to celiac.

The tests are so unreliable I think it will be years before we truly know if all the Non Celiac Gluten Intolerance people are really celiacs for whom the tests failed. They aren't sensitive enough and maybe there are other markers that haven't been discovered yet. Or like Enterolab, he has his own markers but he hasn't been accepted by the larger medical community.

For your sanity, if you choose to stay gluten free, which I 100% recommend, and very strict I  might add... do NOT tell people about your diagnosis debacle. Tell them you  have celiac and it was a blood test. You don't need the hassle of proving yourself to ignorant people or the emotional pain of them not believing you. Make your life easier. They won't know the difference and when it comes down to it, it's YOUR body and your business, not theirs.

Why are they telling you not to call? That's ridiculous and rude. Banquet halls and hotel ballrooms where they hold weddings and parties are the best at accommodating gluten free. Those types of events are where I've had the easiest time. They won't mind at all making you something. I even had great luck at a couple of things where it was a buffet. The chef came out and gave me a personal tour of the buffet before we got started so I knew what I could eat.

If they are embarrassed or feel like it will be extra trouble they need to get over it. These people are professionals and they are used to doing this. It will be fine and have ZERO affect on the people having the party.

I'm so upset for you that your family is treating you like this. Are they super uptight or something? I just don't understand why it matters to them if you call and get your own food straightened out. Do they have some weird idea that the banquet hall will be offended? They deal with thousands of people every year. They won't even remember your event.

Personally, I really HATE reading posts like this because they could actually harm someone if they actually have vitamin deficiencies and read the original post and just stop taking their supplements. Since you are not a medical professional, it may have been better to add that supplementing vitamins should be done with your doctor's knowledge and blood tests to monitor vitamin levels rather than to suggest that someone discontinue a supplement they are taking. Especially if they are taking it because they were instructed to by a doctor for an actual deficiency. Because those mega doses of b12 that you are so hard on are the only thing thing that is keeping me from becoming anemic and stops the neuropathy due to the deficiency.

1. The original poster DID say check with your doctor.

2. Anyone who would stop their supplements just from reading one thread here is a ding dong.

3. Doctors don't know  much about supplements. I was really sick from supplements and THREE doctors shrugged their shoulders and said "I dunno. I dunno. Duhhh." A friend from this board said it was likely the large doses of iron I had been taking for a month of pure hell. I stopped the iron and hey! I wasn't vomiting my guts out every single morning and afternoon.

4. We ALL give each other advice on this board. That is the POINT of the board. I would guess that it is assumed that we are not doctors and that you take the advice as patients trying to help patients. Do we really all need to put disclaimers on our threads now? Is this what we have become as a society?

That's an interesting thought. I think there  may be some parallels, but the difference is that it's not an addiction we are overcoming. We are unable to eat most of the foods that the rest of the world is eating. If we can have them in a gluten free form they aren't readily available whenever we want them like they are for everybody else.

I think the grieving process is similar to what you go through with a death or any other big loss.

It's so much more than food. Food is culture. Food is history. Food is family. Food is tradition. Food gathers people together and it is a major part if not the major focus of cultural celebrations, holidays and major events for every culture in the world. You can get a PhD in anthropology with a focus on food!

When you lose gluten you lose freedom and you lose some social connection. The fact is that you are now forced to plan ahead in ways you never had to plan before. I can't just jump in my car and head out all day without thinking about what and where I will eat. I always pack food with me in case.

I can't just go to a party or potluck and eat whatever is served. I have to ask embarrassing questions or bring my own food. It ALWAYS makes at least one person, usually the hostess, uncomfortable in some way or other. Mostly they are worried about me and they feel terrible that I can't eat the way everyone else is eating.

Treasured family traditions are altered and sometimes abolished for people. If your family has been making the same gingerbread recipe for 3 generations and everyone gathers together to make those cookies each year, it is hard to ask them all to make changes. Yes it can be done, but still... the tradition is altered. Your grandmother's treasured recipe box may not have the meaning for you that it once did.

Christmas is especially hard. My fondest Christmas memories are going to  my aunt's house to bake for 3 days straight and handing out cookie plates to all our friends and family. Gluten free is expensive and many couldn't afford to bake for everyone now.

I know that giving up alcohol can be socially isolating for alcoholics because they generally tend to travel in social circles with others who drink. But avoiding gluten is across the board. I don't know anyone who is an alcoholic except my stepmother's obnoxious sister who I avoid like the plague. So you can find large groups of people who do not get drunk. But it's going to be tough to find large groups of people who don't consume gluten.

It may be that your body is taxed by trying to repair celiac damage and you're worn down a bit. Flu happens. It can last quite awhile sometimes.

If you are already gluten free for over a month, your endoscopy is likely to be negative because your body may have healed the damage in the spots they take biopsies from. That does NOT mean you aren't celiac. If you had a positive blood test then you have celiac. There are no false negatives.

There are some threads about the problems with endoscopies in this forum you may want to read. Honestly if you got a positive blood test and are responding well to the gluten free diet, why are you getting the endoscopy? It's likely to be negative and it's an invasive procedure. I chose not to have one. I didn't want a surgical procedure just so they could tell me what I already knew and put some more money in their pockets.