Lynayah

Even if I eat a small amount of low calorie, low fat food, if there's gluten in it, I feel bloated and I get the same feeling I get when I overeat -- similar to that "uh-oh, I feel like I'm putting on weight" feeling that I get when I blow it on a weight loss diet.

Stuffy, hot, cranky, tired. Sometimes my nose runs. I will feel a slight heavy pressure in my forehead and in the sinus area under my eyes. Also, I get loose stools very quickly, often incontenence. If I eat gluten before bedtime, I will wake in the middle of the night feeling stuffed and hot. No fun.

When I saw the doc last week, she asked me if I am prone to sinus infections, which I am. Not sure why she asked or if sinus infections are common for those with gluten-intolorance. I'll have to ask her next time.

Something interesting is happening to me right now, and I've posted it under another topic (Gluten Challenge: Symptoms Improve?), but I thought it might be worth mentioning it here as well. I've had to do a gluten challenge for the past 6-8 weeks, and just over the last few days, my loose bowel symptoms have lessened, and in the last 24 hours, I've gone from having D to barely having bowl movements at all, even though the doc has me on a laxitive. This is so weird! I'm not sure what to make of it.

I wonder your body starts to readjust in an effort to . . . well . . . adjust!

Oh, and when I eat gluten, I also get more body aches and numbness in arms and sometimes legs. Feet and hips hurt.

Now that I've been on a gluten challenge for over six weeks (prep for my celiac test), my symptoms have started to improve what's with this? I seem to be able to eat more gluten without getting as strong of a reaction. Is this common for some?

Yep--it won't be long now! Just think about how good you're going to start feeling once the test is over with and you can ditch the gluten once and for all.

The laxative may prove to be overkill though--so be careful. Best of luck on Monday--take care.

Thank you, Jerseyangel!

Here's a note for those reading this thread who may have to go through the same thing:

Amazingly, the laxative has been fine -- no problems, and not really any changes (and they say I have a lot to clean out).

Without the Immodium, it is knowing I need a bathroom close by if I eat gluten, but I haven't had any other major "runs," as it were! It feels like old times.

This stuff seems pretty mild. It says on the label that it can take a few days to work, that someone typically sees results on one or two days, so we'll see.

You only have two more days until you can happily toss gluten from your life. You can do it!!!

I have to say though.... if eating gluten gave me diarrhea, there's no way I would take a laxative on top of it. That just sounds like multiple changes of clothes waiting to happen...

As I found out this morning, it is, it is, it is!

That's why I was so tanked up on Immodium! I couldn't do the gluten challenge with out it, well, unless I wanted to carry a wardrobe with me everywhere!

Thanks for the words of support.

Hi, Everyone:

I'm sure this has been posted here before, but as an update I'd like to tell you about my experience with planning a gluten-free Disney World vacation.

My husband and I go to Disney in October. (I am the one who needs gluten-free.)

I called for dining reservations 90 days prior, as is recommended, and I let the reservation desk know about my having to eat gluten-free. They marked it on all of my reservations.

I thought that would take care of everything, but when I was speaking to a Disney World Cast Member earlier this week, she reminded me of something I knew but forgot: It is important to contact the Special Dietary Request Executive Offices as soon as possible once you've booked your dining reservations. 1-407-824-5967.

If you're not booking reservations and just doing quick service, it's STILL important to call. They have a ton of excellent information for you.

Leave a message telling Disney exactly what your allergy needs are. You'll get a call back from the Dietary Department, AND they'll email you a packet overflowing with info:

A letter linking you to Disney dietary info

An attachment that explains how to handle special dietary requests

An overview of what the park restaurants offer

A special attachment that shows all the restaurants that have allergy-free chicken tenderloins.

A copy of the allergy-free chicken tenderloin nutrition label

A dietery request form to send back to Disney

A list of prepackaged snacks

A list of specialty products (did you know you can get a baked potato at Liberty Square with advance notice?)

For my gluten-free needs, I received a specific no-gluten guide to dining in the parks that shows what foods are naturally gluten-free as well as what substitutes can be made at Magic Kingdom, Animal Kingdom, Epcot, and Disney Studios (sit-down and counter service).

Wow!

Also, the Dietary Department told me that Main Street Bakery offers a to-go box which allows you to go to Main Street Bakery early in the day, order what you'd like -- just about anything -- for the restaurant you plan to attend later, and they'll have it there for you!

I assume you can just order carry-out, too. I need to check it out. Not sure.

So, from what I understand, if you're dining at a restaurant that, say, doesn't have allergy-free chicken tenders, all you need to do it order it at Main Street Bakery, and they'll make sure you have it there.

I assume you need to order very early or maybe even the day before. Again, not sure.

I hope this helps! I'm going to post this at disboards.com, too. (For those planning a Disney trip, this site is very helpful.)

Thanks everyone! Hope this helps.

Just wanted to say hang in there! Also, while you are there, ask for a copy of your bloodwork. And, before your procedure, make sure you talk to the doctor to ensure he takes multiple biopsies from multiple locations in order to increase the accuracy of the procedure. ("at least 4 to 6 biopsy pieces need to be taken" - Open Original Shared Link

The end is in site - you can go gluten free very soon!

Luv ya, Happygirl! Thanks for the support.

Everytime I eat wheat, I end up with lower stomach pain, nausea, and diarrhea or crazy stools, in addition to increased anxiety and a depressed mood. I also end up "foggy" and I find it hard to think/make decisions/complete tasks. Inevitably my lower stomach ends up with a burning feeling and when I start eating again it especially burns when food touches my stomach (not heartburn).

So far my results are negative for celiac. I have not eaten much wheat (maybe a beer once a week, a tortilla or pie crust once every two weeks) for a very long time since college when I ate bread every day. I hear that can affect the tests but I'm not willing to eat more wheat for the sake of testing.

I have had a few tests so far:

IGA 158

ENDOMYSIAL AB NEGATIVE

FECAL FAT NORMAL

TISSUE TRANSGLUT. AB 0.3

Reference range: <4.0 Unit: U/mL

TISSUE TRANSGLUT. AB IGG 0.3

Reference range: <6.0 Unit: U/mL

I don't know if I should keep pressing for more tests, or if it's enough to know that when I eat wheat, I get sick? Many others in my family avoid wheat and other grains, also, although none of them have been diagnosed.

Thoughts?

From what I've learned, you absolutely MUST eat gluten for at least six weeks to get a proper diagnosis.

I totally understand how you feel about not wanting to eat gluten. I've had to do it for the last six weeks so I can test, and it's not easy . . . but it is what it is. No fun, but necessary.

Hi,

Please help me get through the weekend?

I go in for my endoscopy/biopsy on Monday. In the meantime, I am told my Deamidated Gliadin is high (86) but my antibody inflamation is low (less than 9). I spoke with the office to get the results, not the Doc., so I'm unsure how to interpret this.

Might anyone offer some thoughts?

In the meantime, I am told that all the Immodium I've been taking to enable me to eat gluten for the last six weeks (I've had to take a TON each day to keep from having diarrhea as well as incontinence) has me so seriously clogged that I need to do something. SO, now I'm on a laxative indefinitely -- Miralax starting tonight -- and no more Immodium allowed.

This is going to be a VERY interesting weekend.

<laughing> Hubby has been lovingly teasing me with, "Gee if they wanted to know if you were full of it, all they needed to do was ask me!"

PLUS, I still have to eat gluten!!! They don't want me off of the stuff until I've been tested on Monday AND they've confirmed they do not want to do a re-test. And I have to work . . . while taking the laxative . . . and eating gluten at the same time. Oh good grief.

Looks like I'm in for a "crappy" time until this whole thing is over. Augh!

Okay, more: I was diagnosed with a dangerously low Vit. D count last year -- I've been taking mega doses of D since, and now I'm testing high which gives me hope that I'm absorbing nutrients and maybe this is just gluten intolorance instead of Celiac, but who knows.

I am so confused about everything.

I love this forum and am so grateful for the support here. Thank you for your help!

reposted under "Please Help Me Get Through This Weekend"

I've been working for about 8mths to get an article written locally about Celiac awareness & it's finally come to fruition! I'm hoping it helps get the word out especially with school starting in a few days.

Open Original Shared Link

You ROCK!!!!!

Open Original Shared Link

This article has some good resources.

Thank you so much for this post. I, too, didn't know about the flex spending option. I don't know if mine will cover it, but it's worth a check. This was an excellent article.

Thank you so much for your response. We have been looking at everything he's eaten and all supplements since we read your post.

The only thing we can identify is that he has been eating TONS of red meat. He says he wanted to get his weight and iron up. I read online that it's possible that too much red meat could cause arthritis. We're going to try cooking more fish and chicken and see if that helps.

The weight gain alone could be causing it. Adjusting to carrying around more weight can put stress on joints, back, etc.

Vit. D deficiency -- he might want to ask to have this checked. I was seriously depleted of D and my joint pain was HORRIBLE. I also became very weak and tired. Note: Do not self-diagnose this one -- it is important to not take excessive D unless under the care of a health care provider.

Kathi,

Can you share your research on hormones and thyroid issues? I believe that my weight and gluten issues are also connected to hormones. After watching something on TLC about the science of obesity I think it as all more connected than we realize. (ie I didn't realize it was hormones that tell your brain that you're hungry.) I also didn't know that Cushings Disease is a pituitary problem.

It just seems that the older I get the harder it is to lose but it sure is easy to gain!

Also...when I gain weight, my libido decreases. I realize that this can be psychcological as well but hormones seem to be the answer to most everything!

I think that we get worse after abstaining for a while is like what we see in the nedical field as a rebound effect.

Rebound effect is the tendency of a medication, when discontinued, to cause a return of the symptoms being treated more severe than before.

We also see this in repeated exposures to allergens such as latex. (Which I am allergic to.) You are exposed on a regualr basis then all of a sudden, one day...BAM! You break out in a rash and can't breathe.

Tobasco,

You might enjoy reading Jillian Michael's Master Your Metabolism: The 3 Diet Secrets to Naturally Balancing Your Hormones for a Hot and Healthy Body. It addresses some of the issues you mention.

No matter what the test results it sounds like your body has give you the answer. I would go back to the diet the day the tests are done and not even wait on the results. False negatives are not uncommon and some times the body tells us what the tests cannot.

Ravenwoodglass:

Wonderful words of wisdom, as always, from you. You -- and so many others here -- are such a blessing to this forum. It makes me think that all your years of suffering were not completely in vain -- not sure if that counts as a silver lining or not, but for those you've gone on to help from all you learned in your hardships, it certainly is one.

I really don't know how these tests will play out -- I'm assuming they will do blood work first and then decide whether or not to biopsy after the results come in. I can't help but wonder how long I'll have to wait until all the tests are completed. I hope not long. I have weird blood so it might take an extra test or two. For example, I've had a low white cell count all my life and no one has ever been able to explain why -- could Celiac have something do to with this as well, I wonder????

I agree with you about not waiting for the final results before switching back to good eats. I KNOW I need to be gluten-free and am counting the days until I am back to eating healthy again.

Ha! I guess it must sound a little crazy that someone could actually look forward to giving up gluten completely, but I am so there.

Whatever tests they did, it sounds like they didn't do the gluten antibody test, so if they didn't do that specific test, sensitivity to gluten would not show up. You have the right as a patient to a copy of all of those test results, ask for them so you can at least see them and perhaps take them to another dr.

My doctor did a full blood panel last August (CBC, white cells, all that stuff including thyroid, liver, kidneys, cholesterol, etc). According to all of the tests, I am the picture of perfect health. They did not explain why I was so tired (tired seems like an understatement, lol) all the time or any of my other symptoms. He thought I might have environmental allergies due to my severe sinusitis. It wasn't until I quit eating gluten a couple months later that my symptoms started going away. This is a dr. I really liked and respected but he didn't catch it. Of course, I don't think I mentioned my digestive symptoms to him, so....

Keep switching doctors until you find one that actually LISTENS to you. It may take several, since most are idiots, in my experience. If a Dr. starts lecturing you about not following up with your previous doctor, or you feel he/she isn't listening to you, get up and walk out. Many celiacs are overweight or even obese before they start the diet. One of my problems was I could not lose weight no matter what I ate or how much I exercised, and when I went gluten free, I lost 10 pounds in less than a month. I am overweight, but nowhere near obese. I think it has to do with whether you have diarrhea or constipation as a symptom. If you have the diarrhea, you can't keep any weight on. If you have the constipation, well, if you're ingesting food and can't poop it out....

Anyway, I hope you feel better soon.

In my case, I have a horrible time losing weight when I eat gluten, and I have diarrhea as well as bowel incontenence.

Just want to say thank you for all the posts here. I am going for my second opinion tests this week and I am actually living in fear of the tests coming back negative. I have horrible bowel incontenence and loose stools shortly after eating gluten . . . but no symptoms when I go gluten free. Gee, whadayathink? Also malabsorbtion issues last year.

Dear Lord, please help all of us who are struggling to find the answers we need.

In the meantime, thank you for this forum!

Love to all here,

Lynayah

Glad to hear there are other people with this problem. It seems to happen to me if I get glutened or if I eat a lot of things with artificial sugar, like candy that is sugar free. It is so uncomfortable that it can happen and we are out among the public.

I've since talked with others who have the same problem. We're sooooooo not alone. Problem is, we never want to talk about it, so it goes hidden. I'm so glad for the responses to this post.

Thanks again.

I found this:

Open Original Shared Link

You'll find a nice selection to get you started. Weber Grill is one of them -- it is indeed a wonderful restaurant. I haven't been there gluten-free yet, and I'm happy to see here that they're Celiac friendly.

Thank you!

How do I pull up my subscribed threads in the forum? Thanks.

That's so amazing!!! Thanks for sharing your experience!!!!

Hi, Crayons574:

I agree! Even though the original posts are from some time back, reading them helped me so much NOW. We're going to WDW this October -- I am being tested for Celiac in a couple weeks, and it will be the perfect place to go while coping with it all . . . assuming of course that I need to give up gluten (which I most probably will).

I am glad you all liked my roll story! We (my husband and I) did cry! We were sitting there wiping our eyes and smiling like fools! I should probably tell you that he spent a good portion of the meal just taking them in and out of the basket! It was too cute! I didn't mention this before, but, as a side note, he even swam in the pool with no ill effect. Every other pool we have tried has given him hive-like rash and complicated his eczma. My parents are Disney enthusiasts and they assured me that they use some substance in the pool that is better for allergies than the normal stuff. I was skeptical, but with pool-side rooms and that great Pop Century pool, we gave it a try. We were in it every night. He loved it and did fine.

Also. . . certain ice cream novelties were supposed to be gluten-free at the snack stands. We went to get one, but had to check it, of course, for peanuts (anaphalactic allergy). I was very impressed that when the info. wasn't on the wrapper, the staff member (Disney's word for employee!) called very quickly on her little radio-thing to the parks food service office. Within moments they had the manufactor info. and confirmed that although gluten-free, it had been processed on shared equipment with peanuts. All of this took less than three minutes, no joke. We made an alternate selection and moved on with the epi-pen safely in the bag!

I can't guarantee they would always be this on the ball, but, I was quite impressed.

Wow. Disney is indeed, MAGIC!

LOVE your post! Thank you so very, very much!

<<Your kitchen equipment has been plotting against you for years. >>

Yep, it's a plot all right . . . a secret plot that includes everything from frying pans to food to sanity.

Shhhhhh . . . . no one knows it, but the whole thing has been surreptitiously commissioned by the manufacturers of bird seed . . .

PS to Karen:

Are you staying on Disney Property? If yes, then ask the desk to guide you in any gluten-free info they have. Also call WDW Dining. I believe the telephone no. is 407-566-5858.

From what I hear and have read, there is no better place in the world to visit for friendly, gluten-free dining! Enjoy!

Disboards: Open Original Shared Link

Let me know if there is anything else I can help you with. While this will be my first time dining gluten-free, I'm pretty familiar with WDW and am happy to assist.

: )

Lyn

Hi, we are leaving on August 3rd and driving down to Orlando and going to Walt Disney World. It is my husband, myself, and three children. We are staying outside of the complex but have bought a 5 day pass. I don't think we will be dining in any restaurants, just counter food. Are there any particular places that offer gluten free options the fast food route? i.e. Nachos and cheese, etc. Oh, I am the only one gluten free. Everyone else is fine.

Are there any options for restaurants in the Orlando area (we are on a tight budget, lol.....)

Thanks!

Karen

Hi, Karen:

What what I've read, YES . . . most of the counter service restaurants there can accomodate you. Just make sure that, instead of waiting in line, you ask to see a manager as soon as you arrive. Be prepared to wait a little longer than usual, too, as the kitchen takes care of you.

You might want to visit disboards.com's disABILITIES forum. There have been some interesting discussions there regarding gluten-free Disney, including counter service.

Hope this helps! HAVE A GREAT TIME, and please post on the forum when you return. We would LOVE to hear about every restaurant.

Best,

Lyn