Jump to content



   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Ads by Google:
Celiac.com Sponsor:                                    


sandsurfgirl

Member Since 12 Jan 2010
Offline Last Active Jul 26 2014 05:00 PM
*****

#922916 How To Convince Bf That Cross Contamination Is A Problem...

Posted by sandsurfgirl on 06 July 2014 - 10:14 PM

If I could get on my knees and beg you not to move in with him I would. You say it is an otherwise great relationship, but you may be a bit lovestruck and missing some things. At any rate, the things he is doing to you are abuse in my opinion. 

 

I don't mean to be harsh but here is how it reads to me. From what I read of what you posted he sounds very controlling, abusive, and narcissistic. Here is an example to give you a comparison. When I found out I had celiac my husband INSISTED the entire house go gluten free. He busted his butt learning about CC, how to handle it and what to do in the house. When he found out our son also had it, he became vigilant. 

 

He never ever questioned me about my food. As a matter of fact he will err on the side of caution and if there is something I am willing to eat that HE feels is unsafe, he will ask me not to eat it. HE will ask ME not to make my own self sick because he is so worried about me and it gives him pain to see me suffer. 

 

One time he was starving after working a 10 hour day and commuting for 2 hours in traffic. I had not made dinner. Kids and I ate out. So he grabbed a quick teriyaki bowl at a local place and brought it home. My son was crying because teriyaki bowls were his favorite. My husband could not apologize enough and he has never once  brought gluten into our home again.

 

Our home is a zero tolerance gluten free zone because of my husband. I was willing to try a shared kitchen and he was adamantly against it. 

 

If all he was doing was arguing over the blender I wouldn't think it was that bad. But the man is arguing with you to the point that you feel so incredibly harassed and beaten down that you are eating gluten and making yourself sick in order to avoid a fight with him.

Do you see how that sounds? Pretend that you are your own mother and you're hearing that some dude is treating your daughter that way. What would you tell her?

 

My last piece of advice is don't shack up with anybody. The odds go way up that you will not get married and if you marry your chances of divorce are significantly higher than if you had not shacked up. When you shack up with someone, it's generally because deep down in your core you have doubts about marrying them, so you rationalize that you are saving money, getting to know each other, etc. I have been divorced when I was younger from my first husband (who reminds me A LOT of your boyfriend) and I have broken up with a boyfriend I was living with. Both of them were equally hard and equally traumatic. I wanted to break up with that guy for two long years but because we were livng together I could not extricate myself from him financially. It cost me more money to break up with the live in boyfriend than it did to get my divorce because of how we handled our finances.

 

This guy has so many huge red flags, I would run screaming like my hair is on fire and never look back. It will only get worse when you live with him or God forbid marry him.


  • 2


#922914 5 Years Gluten Free- Encouragement For The Newbies

Posted by sandsurfgirl on 06 July 2014 - 09:58 PM

I used to post here all the time. I don't have time anymore, so I come on once in a great while. I just wanted to share where I am at 5 years into being gluten free as encouragement for the newbies.

 

I was diagnosed at the age of 40. Extremely ill at diagnosis. It took me a full 6 months gluten free to have one symptom free day. I had horrible withdrawals from gluten. I highly suggest that newbies use the search function on here and read all the old threads about withdrawals and the healing period so you know it is normal.

 

I was so overwhelmed when I found out I had celiac that on my first shopping trip after diagnosis, I had a massive panic attack. I left an entire cart full of groceries in the line at Sprouts, ran to my car hyperventiliating, barely made it home because I felt like I was going to pass out and cried hysterically on my couch for over an hour. 

 

But I got used to it. My little boy was diagnosed after me so our whole house went gluten free. I got a gluten-free bread maker and learned to make my own bread. I found plenty of safe restaurants in our area we can eat at.

I learned to bake cookies and cakes that will knock your socks off. As a matter of fact we went to a campout with some other families. One guy made peach cobbler in his dutch oven, so I made us a gluten-free version in my dutch oven so we wouldn't be left out. A couple of friends tried mine and secretly told me my gluten free on was way better, no comparison.

 

My son used to have a hard time feeling left out with snacks and things. I always bring him matching alternatives to what is being served at gatherings and parties. But eventually he came to realize he is healthier because of it and he is happy being gluten free.

 

I was intolerant to soy, dairy and night shades at first. Now I eat dairy all the time with zero issues and love my night shades. Soy still gives me a stomach ache so I avoid that one, but it's livable. 

 

Parties and pot lucks are a bit more difficult for me but they are no longer stressful. My friends have actually started making gluten free stuff for me at get togethers without me even asking.

 

I came here to write up a review of a great restaurant that is nearly all gluten free, and then I thought I would like to share with others. I know when I was new to celiac I was a total wreck. I was so sick, so miserable and I felt like I would never get better, that my suffering would never end. I'm Italian and I cried my eyes out over pasta and raviolis. Then I learned how to make gluten free pasta taste amazing. Whatever you are going through now WILL get better. Some of us still have other intolerances like me with soy, but you deal with it and you learn to make things less about food. I am okay going to a party and letting it be about the friends and not about the food. 

 

So hang in there newbies! If you feel sick and horrible, pamper yourself. Spend lots of time in bed. REST. SLEEP. Eat clean until your body feels better. Eating clean and going off almost all grains is a gift you can give yourself now. 

 

I just ate the most scrumptious homemade gluten free cherry cupcakes with creamy homemade gluten free ice cream. And my tummy is stuffed but it is not sick.

 

Blessings to all of you! 

Sandsurfgirl


  • 4


#834422 Exhausted And Venting

Posted by sandsurfgirl on 04 November 2012 - 07:25 PM

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.
  • 1


#796621 Doctors Still Not Diagnosing Me, Need Advice!

Posted by sandsurfgirl on 18 May 2012 - 06:33 AM

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.
  • 1


#796620 My Prediction

Posted by sandsurfgirl on 18 May 2012 - 06:27 AM

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.
  • 2


#796370 Shouldn't Have Had The Mike's Hard Lemonade

Posted by sandsurfgirl on 17 May 2012 - 10:32 AM

I still wouldn't touch it. Too scary.
  • 1


#796299 Shouldn't Have Had The Mike's Hard Lemonade

Posted by sandsurfgirl on 17 May 2012 - 06:50 AM

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.
  • 1


#796004 Gluten-Free Food Taken Away At Sea World

Posted by sandsurfgirl on 16 May 2012 - 07:57 AM

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.
  • 0


#795642 Deeply Frustrating LGBT Issue

Posted by sandsurfgirl on 15 May 2012 - 06:12 AM

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.
  • 2


#795390 My Prediction

Posted by sandsurfgirl on 14 May 2012 - 06:48 AM

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.
  • 1


#795321 My Prediction

Posted by sandsurfgirl on 13 May 2012 - 10:15 PM

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.
  • 3


#795311 Can You Explain This One?

Posted by sandsurfgirl on 13 May 2012 - 09:31 PM

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.
  • 2


#795204 Negative Test Result

Posted by sandsurfgirl on 13 May 2012 - 11:36 AM

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.
  • 1


#795176 How Do I Handle Family Functions That Revolve Around Food?

Posted by sandsurfgirl on 13 May 2012 - 07:26 AM

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.
  • 1


#795142 Beware B Vitamin Toxicity!

Posted by sandsurfgirl on 12 May 2012 - 10:29 PM

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?
  • 1