Lynayah

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.

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You ROCK!!!!!

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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:

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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

If you are ever in the Boardwalk area, I would suggest Spoodles. If you give Chef Marilyn some notice, she can try to get in her gluten free cheesecake (it does have nuts) - YUM! They have many items to chose from and they were all wonderful. We ended up dining there 3 times during our stay! YUMMY tapenade and tapioca rolls, too! We did breakfast and dinner (I do not think that they serve lunch).

They also have lots of lists available for quick meals/snacks and where to go. If you let them know about your food allergies/celiac, chefs will even call you at home to see what you like. Very nice!

I'm not 100% sure, but I think Spoodles is closing and then opening to another restaurant -- Cat Cora, I think, may be taking it over.

Yes, I've heard many wonderful things about Spoodles. I really need to check out the status of it.

Click here to read a recent discussion about abbreviations.

Thank you!

My first test was negative, too. I didn't know I had to eat gluten for 8 weeks before being tested - doc at the time didn't tell me. I have another test coming up in August. As I wait, I am actually afraid the next test will come back neg., too -- possibly because the doc hasn't asked me to eat enough gluten each day in prep. I know I have either gluten-intolorance or celiac disease -- no doubt. I just thank goodness for this forum where I know I am not alone.

I remember reading somewhere that when you have DH - the skin disorder -- they can biopsy the skin to test for celiac disease. Forgive if I missed it in your post (I'm not the best at reading medical "stuff"), but did you have the skin biopsy done?

In the meantime, please know you are not alone. Many of us have been told "negative," only to continue with life thinking we're fine . . . and yet have symptoms, problems, confusion. There is still so much that medical science still needs to learn, perfect or discover. It is up to us to help direct them. Everything happens for a reason, so they say.

Hang in there. Keep using this forum for support.

Sending a big hug,

Lyn

DH, DS, etc. -- what does it stand for?

I'm sure I'll say DUH once I see the answer. Thanks for any assistance.

Lyn

Hi, Everyone:

We're planning a trip to Walt Disney World in October, and I'd LOVE to hear about your favorite WDW gluten-free dining experiences . . . and why.

A little background: Hubby and I are going solo, ages 55, 56 -- this is our first time together in WDW without kids since our honeymoon in 1977. This will be my first time gluten-free. Hubby loves all food and, at least as of today, he can (and does!) eat anything, so he's good to go.

I've heard about how wonderful WDW is with gluten-free food, and I am very excited about it.

We are going on the dining plan which includes one snack, one counter service meal and one single credit sit down meal per person. Signature restaurants require two credits (we've booked a couple of them).

We are staying at Animal Kingdom Lodge.

I've let WDW know that I need gluten-free dining.

We will be there during the Food and Wine Festival -- not sure what we can do gluten-free there and am in the process of checking. I'll be sure to post what I find. If you know anything, do tell!

I've booked reservations but I can always change them if need be. We have a couple nights open and have yet to decide where to eat on those nights. I'm counting on everyone for feedback, here. Here's what we've booked:

Sanaa

San Angel Inn

Citricos

Jiko

Boma

Flying Fish Cafe

LeCellier

I still need to plan the counter service days.

As we all know, IT'S ALL ABOUT THE FOOD! Any and all help appreciated. Thank you. I'll be sure to post reviews when we return.

Lyn

1 - This sounds plausible.

2 - Absolutely! I never had a direct reaction to gluten before my diagnosis but after only the first two weeks of going gluten free I had a reaction to the fairly small catholic communion host. It was very surprising. I have had a couple of accidental glutenings since then with reactions which never happened before. It helped confirm to myself what the blood and biopsy had already diagnosed -- before that I had no clue that gluten was a problem.

Good luck with your test in August but I have a feeling I know what the outcome will be.

Thank you, Zero!!!!!!!

How about a skull and crossbones? Or the international symbol for radioactivity? Or a picture of a black hole? Sorry, I'm just trying to make you laugh because I don't believe there is a good way to help anyone understand something they either are incapable of understanding or they have their heels dug in against, and, weirdly, this affliction falls into those categories. Wheat is so INGRAINED (sorry again) in us as the "staff of life" (and indeed agriculture allowed huge gains in human population growth) that people are loathe to think of it in anything but benevolent terms.

If you find a "quick" way, please let us all know because many here have been struggling with making others understand for years!

take care and good luck!

lisa

Well, it worked! I laughed quite a bit at this one. Thanks for the smile.

Still searching -- something that lets family and friends (any maybe even restaurants) understand -- in a very simple, easy to read way -- that someone with Celiac cannot have just a little bit now and then -- also maybe a word or two about how serious cross-contamination can be. Anything?

Hi, I did read your other note..

The information about 0,3 g per kg I found here in some article at celiac.com, and the part about 0,5g per kg I found in an abstract at www.pubmed.com .

I think one might get apositive biopsy on less gluten, but it is so individual.

When I went on a gluten challenge, I ate 21 or so g of gluten per day, and my weight went down slightly during the time.....I think it was because it was so much gluten that the villi were damaged. I was hungry all the time too.

But the biopsy was too soon, only 5 weeks. I should have asked for a later date. I thought I had eaten enough gluten in the time before but later realized it was way too little, just occasionally.

I did not have a hard time, but my DH skin sensations returned on the challenge (burning sensation) and just after the cchallenge the neurological sensations returned, and I went gluten-free again. Not fun when the feet and arms disappear (I did not know where they were)

a while ago I had some scio treatment (alternative stuff) and before christmas I was glutenend at a restaurant and the scio said my fatty acids were off. later I was glutened again with the same message from the scio.

Now fatty acids have a lot to do with weight.

I would think you will be able to have a normal weight afterwards when you go gluten-free again.

My weight just kept dropping afterwards.

nora

Very interesting, thank you. I have left a message for my upcoming doctor to see if I need to be eating more gluten.

What is SCIO?