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Member Since 04 Feb 2007
Offline Last Active Jan 21 2013 06:50 PM

#633796 Stupid Things People Say

Posted by on 22 August 2010 - 12:38 PM

...and people have ACTUALLY said "people would LOVE that problem of weight just falling off for no reason no matter what you eat!"

I'm with ravenwood. If someone says that comment on a bad day, I'll blow a gasket. In fact, last week I went to the hospital lab for my monthly blood work (vitamin levels, etc...) and the intake lady looked at my lab sheet and said, "oh, 'weight loss', that's a convenient problem...poor you!" And she was very sarcastic. I kindly replied, with a sweet smile, "I'm happy to switch places with you for a week and you can have my explosive, uncontrollable D, muscle aches, and chronic nausea after every meal." :D

I hope you get your answers. I'm not as shocked that an intake lady at the hospital was so insensitive about my medical issue as I am about a neurologist who clearly is uneducated. That's a scary realization!
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#632178 On The Couch For 2 Days!

Posted by on 16 August 2010 - 01:41 PM

I am not sure if I understand. What fruit are you eating ? Most fruit is off the FODMAP diet. I am Celiac + FODMAP myself.

Is there a reason for being Dairy Free ? FODMAP does not promote Dairy Free. If you react to lactose ( as per testing ) then you need Lactose Free which is another thing altogether. Hard cheese has virtually no lactose. Cream. Butter. And Dr Sue Shepherd also advises that small amounts of lactose may be fine ( ie milk in coffee) to help prevent the "super sensitive" situation. And then there are always lactose free milks and lactase tablets of course.

Is there a reason you are not eating bread, waffles and cakes ?

Are you able to get to a Sue Shepherd trained dietician or get her books or tapes? She does phone consults as well. As FODMAP is new - some info from the web is old and out of date. Monash University in Melbourne has the latest research.

A glass of wine is OK though :)

You are making my brain work...I like it!! I have been reading the Sue Shepherd information, as well as what comes from Monash. I never thought about a phone consult! Good idea. I've got the Patsy Catsos (IBS-Free at Last) book and it follows what comes from Sue and Monash. Although, I don't think the book is highly scientific, it gives the basics.

I'm eating bananas (but only 1/2 per day in my protein shake), and some berries, and 1/2 a grapefruit...never at the same meal. I'm eating carrots, broccoli, fennel and some lettuce (green leafy, spinach), pumpkin and potato...maybe a few more too that I'm forgetting. I'm very NEW to FODMAP...like 2 weeks.

And the dairy isn't a lactose problem (that I know of), but a whey & casein issue. I can't tolerate those proteins to save my life. Most everyone on the planet can tolerate whey isolate, but not me :( .

I'm refraining from most grains because "they" told me too. ha! Most everyone on here recommends abstaining from grains in the beginning, but I had voluntarily began that because I was following (and loving) the Paleo diet before I started hyperreacting to foods. I'm not much for processed foods anyway. But, I'm not against learning to love them either!

I'm going to request a dietician from my GI this week. I've been wanting to see a nutritionist, but they aren't covered under insurance and they charge crazy fees! I think a dietician should be covered and, hopefully, a Sue Shepherd one!

Any other ideas, keep'em coming! Give me some more info about FODMAP. What's a typical day of food look like for you?
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#632169 On The Couch For 2 Days!

Posted by on 16 August 2010 - 12:59 PM

Perhaps you need to be tested for FODMAP. You may be reacting to the fruit. Or Fructans.

Great minds think alike! I'm actually avoiding all FODMAP's at the moment. Which, is probably why I feel like I have no variety when you add that to the no dairy, soy, corn, legumes, etc...

I'm still having issues despite no FODMAP's. My doctor doesn't do the breath testing for fructose malabsorption as it's unreliable. But, he said trying the diet is a better indication of how my body responds. Unfortunately, my body doesn't like anything :angry: . I wished the FODMAP diet included margaritas because I would get saucy on tequila :D
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#632154 On The Couch For 2 Days!

Posted by on 16 August 2010 - 12:14 PM

Thanks guys for the good cheer! I'm going to mention to my GI about the microscopic colitis. In fact, that's the only test I haven't done lately...the rear shoot :blink: colonoscopy! So, that seems to definitely be a possibility. I know I'm positive for SIBO and that runs hand in hand with microscopic colitis. Hmmm. Thanks for the idea.

dilettantesteph, I sure hope I don't have to be so picky the rest of my life. However, if it means not running to the toilet every 5 seconds, then I'm game. Why don't you eat chicken? I try to buy organic, or even buy a full-on locally raised organic chicken from my neighbors when possible. I live in the country ;) What type of meat are you eating? I don't eat seafood. Never have been able to tolerate the smell, no matter how fresh. Makes me want to projectile vomit. So sad because that would greatly increase my food variety!!!!
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#632018 On The Couch For 2 Days!

Posted by on 16 August 2010 - 04:16 AM

I just need to vent. Probably, blow a gasket!!

If you've read my posts before, you know that I don't lay around. EVEN, if I'm tired. I might take it slow, but I don't lay around. I have never felt worse in my life. I'm approaching month 4 on gluten free and I feel miserable. I'm pretty much anxious or scared to eat anything. I'm down to a few meats, rice, 4 different veggies, 4 different fruits and some oils. I constantly have "D". If I cut anymore out of my diet I'll will flat out starve to death. This cannot be normal!!!! I am reacting to EVERYTHING. My husband felt so bad for me yesterday trying to cook me some chicken that he had tears in his eyes. And he isn't a baby...at all. And why does my "D" show up at the same time every evening? Like clockwork.

I'm headed back to the doctor Wednesday to get results of all my testing from the last month. I know that the pill camera still shows signs of Celiac, there is also SIBO, blood tests showed rheumatoid arthritis, amino acid deficiencies, plus some others. My previous blood tests showed low white blood cells and hemoglobin.

All I have to say is that when this SH*T is over, I'm sending my story to Mystery Diagnosis. Because, I'm no gambler, but this cannot be just Celiac. I think I went gluten-free and body decided it was time to shut down.

If this is any indication of how miserable I am, I am skipping the gym today. And I usually go despite feeling like I'm going to pass out!

This crap sucks! As Justin Timberlake once said, "Cry me a river" :angry:
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#632016 Anyone Immune To Poisin Oak/ivy?

Posted by on 16 August 2010 - 03:52 AM

I am immunue (knocking on wood just in case ;) ) to poison oak/ivy. It's funny this topic even came up because about 2 weeks ago I was out running in the woods with my girlfriends. There was loads of "ivy" brush hanging down on the trail...it's not normally that overgrown. I can't tell the difference between oak, ivy, or regular ivy that grows on a house :blink:. So, naturally, I knocked the ivy down with my bare hands. My friends freaked out, "that's poison IVY!!!"...But, I had no reaction. I was holding large quantities in my hands, but didn't have a reaction. So, yes, that is bizarre!
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#630079 gluten-free Diet Confusion

Posted by on 08 August 2010 - 05:58 AM

Hi merbear & welcome. I'm 3 months into this diet and I can tell you I wasn't very reactive to wheat or gluten before. I just had sporadic bowel issues. My real issue was NOT in my gut (so to speak), but my chronic low blood sugar and low vitamin levels. The blood sugar finally got so out of control I demanded answers and went to every doctor I could to get that answer. Going gluten-free "cured" my low blood sugar, but now I'm so sensitive to gluten that even looking at it makes my intestines panic :P .

There is so much misinformation out there on Celiac from the "professionals." This sight has the real professionals;) ...the ones who live with Celiac, or gluten intolerance and know the effects. Each one of us reacts differently. Stick with whole, fresh foods that are naturally gluten free. Stay away from most processed foods until you learn the ins and outs of where gluten lurks. I did the Paleo diet in the first month just because it's naturally gluten free because reading labels was WAY too overwhelming for me!!

I went to Chili's last night (my son was STARVING after his flight). I had no intentions on eating there. They do have a gluten free menu, but I still don't trust them. Well, the waiter talked me into trying the chicken & cilantro soup. Umm, yummy! And, I didn't pay for it later. Eating out is always a risk! But, sometimes to be normal the risk is worth taking as long as you explain your situation....but, aim for restaurants with gluten-free menus. Also, I bought some "dining out cards" online and those have helped. They will explain to the chef what you can't eat and help them to know what ingredients are safe. I bought the ones in 8 different languages that speak directly for each type of cuisine.

Good luck! Come here with all your questions. Someone always knows the answer!!
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#629613 Starting Out

Posted by on 06 August 2010 - 05:08 AM

Howdy aderifield. There are two ways to go about this. Either you NEED a confirmed diagnosis (like me), or you will become satisfied with the improvements brought upon by the dietary changes and that will be all you need. If you need the diagnosis to be confirmed, stay on gluten. Otherwise, stay gluten free.

When I first went gluten-free I thought I had been ran over by a semi! I believe it was 2 weeks of hell. Might have been longer. Then, when the nausea and "D" started to subside, the other food intolerances started to creep up. The first was dairy. The beginning stages of gluten-free can bring out other intolerances!! Next, I cut soy. Then, I cut corn products. Now I'm working on a new found fructose malabsorption issue, which means no more fructose. Yes, it's very limiting, but I now this is par for the course for many of us. I also know that many of these things are temporary and most of these foods can be reincorporated back into the diet after healing. I would strongly suggest cutting dairy. You may not need to cut anything else ;) My GI said dairy could cause significant intestine damage for a healing Celiac. Better safe than sorry! My insatiable thirst is resolving day by day. I also was considered pre-diabetic, but at the opposite end of the spectrum with chronic low blood sugar as this can also result in insulin resistance. My blood sugar problems are completely resolved, unless I get glutened :blink:

I'm still working through my personal Celiac journey. Each person has a different healing path and this forum can be a great source of information. I wish you luck and let us know how you are doing!
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#629423 Gluten Free Party

Posted by on 05 August 2010 - 01:22 PM

I second the Mexican food night! Yum yum! Tacos, tostados, taquitos, enchiladas (tons of variety there!), nachos, quesadillas, salsas, margaritas...Can you tell my favorite food fair?!

2 days ago was my birthday and when I showed up at the gym, my workout mates had made me gluten free cookies, brought in all the ingredients so I could verify and then went into a 5 minute explanation of how they cleaned the kitchen to prep the food, used a one time disposable pan to keep from CC, etc... I nearly cried because the gesture was so dang sweet! It's friends like these (and your dinner party ones) that we should cherish!
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#628244 "But You Can Eat Whole Wheat, Right?"

Posted by on 01 August 2010 - 02:24 PM

I've had a few folks recently tell me that "a little wheat won't kill you." So, I've politely offered to eat the wheat, but ONLY if they would politely spend the night with me and read me stories while I spend an entire evening on the toilet with "D." While it may not kill me, they will most certainly want to die after an evening spent with me trying to de-gluten myself :P
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#628150 That Cupcake Just Fell Right Down My Throat!

Posted by on 01 August 2010 - 05:46 AM

I am going to be baking my own bday cake for my bday on Thursday and I am glad I ran across this!! It'll help me with the times lol. YAY for good gluten-free cupcakes/cakes!!

Happy early birthday! Mine is on Tuesday.
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#625557 A Weeked Long Family Vacation

Posted by on 21 July 2010 - 01:14 PM

Well, for example if I am considering a baked fish dish and it doesn't say on the menu if it has a topping I will ask and tell them I can't have any flour or breadcrumbs. If they don't know they will ask. For example buffalo wings can sometimes be breaded and I will always ask. I don't bother with the whole celiac explanation. I just say I can't have flour, or breadcrumbs or wheat. I just let them think it is an allergy.

Yeah, that seems to go over better using an allergy. Do you explain about CC? Or just roll the dice? I ordered from the gluten free menu at a restaurant 4 days ago and was sick as a dog, but I never explained about CC. I think that's where I went wrong?
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#625550 A Weeked Long Family Vacation

Posted by on 21 July 2010 - 01:07 PM

I am still sensitive. I would get symptms with a small bite of something with gluten. You just get used to doing it.

I'm glad I read your post. You are a 20 year veteran and give me hope! I am happy that this adjustment period will fade and I will also become good at eating out. I desperately miss eating out on a regular basis!

Just curious. When you visit a restaurant, especially a new one, what do you say to them? Exactly what types of questions and directions should be going down?
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#625331 A Weeked Long Family Vacation

Posted by on 20 July 2010 - 03:40 PM

It all sounded good. But here was the problem...I felt left out. :(
So basically, I'm early in my diagnosis, finding out that I am VERY SENSITIVE (like an unclean plate can send me into a 2-day nightmare), and scared of other people's CC! I mean...SCARED! I am terrified that a waiter will grab a bread basket before taking my possibly gluten free meal to my table and cc me! Or maybe a crumb will jump onto my food from the crunchy bread an unknowing family member sitting next to me flings at me while buttering their little piece of poison! Again, I know I'm going over the top and paranoid, but I'm really scared!

Within my 4 walls of "controlled space" I have a comfort zone. I suppose the enormity of my diagnosis has hit me heavy all of a sudden, and I am trying to come to terms with this new chapter in my life.

In addition to my general question, here are some more specific ones...How do you all "deal" in public? How does your family support you while on vacation or eating out? What small changes can you make to have a positive experience at a restaurant? Is eating out always a roll of the dice?

Wow, your post really hit home for me. I just returned today from a 4 day river rafting trip with my good girlfriends that I work out with EVERYDAY. We know each other very well. They've been with me through this diagnosis, but they've never stared at it in the face as they did when we stayed in this super tiny cabin. It was a big reality check for me. It was my 1st trip out of my comfort zone and I thought I had it in check. My husband and I made all my food, pre-packaged everything neatly, labeled them with what meal and day it was to be eaten. But, the first night we got there they planned for us to eat out, but made sure I had the choice on where to eat. I called ahead, found a restaurant with a gluten free menu and a nice helpful manager, but I still got glutened. That set things off from there. I was so upset and annoyed that my trip was off to a bad note and that no matter the precautions I had taken, it was still out of my control to NOT get sick.

I did feel left out as well, but I know that is something I'll have to come to terms with soon. In fact, they kept asking if I missed eating the things they were and my response was, "I only like food if it doesn't make me sick!"

I don't want to miss out on these fun adventures, but I feel like there will always be a risk. My friends bought me an economy box of matches for the bathroom and told me to "have at it." Aren't they sweet :P But, I did feel like a pesky, sick, annoying hypochondriac. We are both new to this, so social situations will just take more getting used to. My biggest complaint right now is having a balance of explaining the severity of my intolerance and the person on the other end "getting it" without dismissing me, or me having to sound like a raving lunatic :)

The fun part about the trip was everytime something went wrong, or somebody did something silly we would all say "they must have Celiac Disease." We got a few laughs out of that!
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#618375 Do Doctors Normally Do "maintenance" After A celiac disease Diagnosis?

Posted by on 21 June 2010 - 04:42 AM

Not sure if this helps or not, but I finally had my appointment with "THE" guru celiac doctor here in Houston last week. He spent 2 hours with my mom and I discussing the testing he would do, what tests need to be done, what sort of follow up plan needed to happen, the seriousness of Celiac, etc...

Basically for post-diagnosis, he told me I need to check in every 3 months to monitor vitamin deficiencies as he doesn't want me toxic from taking the higher amounts. Since it's an autoimmune disease, he wants to check my overall health status (how I'm feeling, any new symptoms, celiac blood work to check for CC, etc...) about every 6 months. He ordered a bone density scan, endoscopy, colonoscopy, CT of gut, blood testing through Prometheus. He also mentioned that the endoscopy needs to be done a few times throughout the recovery process to monitor the healing and to check for CC.

So, it seems to me that follow up is pretty essential even if the gluten-free diet has eliminated most of our symptoms. He was also pretty intrigued that my mother had a ton of secondary Celiac problems (never diagnosed), but zero gastro issues (thyroid disease, liver disease, osteopenia, etc...). So, he demanded she get tested too. It was such a thorough appointment, which most of us never experience, so I wanted to share what the best doctor in Houston would suggest. ;) Good luck!
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