Lynayah

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?

Does anyone here have experience with the University of Chicago Celiac Center physicians for adults? I have an appointment with Dr. Semrad in August and would love to hear from other who have used her or the Center. Thank you!

Lyn

Yes.

A note about teh two slices of bread: when i did the math, I needed at least 6 slices of bread to add up to 0,3 g per kg. Nowadays they even recommend to increase to 0,5 g per kg per day. You will need to do your own math.

If you weigh 50 kg, you will need to eat 25 g of gluten.

To find the gluten, it is about 90% of the protein content of wheat. (and of bread without added milk)

And the duration, at lest 6 weeks, better three months.

I read some abstracts and the time frame is important, they put young celiacs on a gluten challenge and after some weeks all had relapsed, but only some after four weeks I think I remember.

Thank you so very much for this information.

Oh my gosh. I hope I wasn't given wrong information -- my doctor's nurse told me the gluten I ate each day "didn't have to be much." This information came from the University of Chicago Celiac Center, and I assumed they were completely up on things.

I've been questioning the amount all along and have been very unsure and confused about so very, very, very much. There's such a hodgepodge of information out there. Augh!

I pray what U of C told me is true. I cringe at the idea of having to start all over again forcing myself to eat poison every day. I am feeling more down than I have felt in years, and it doesn't help that I am gaining weight no matter what I do, which is horribly depressing, too.

Worse yet, we are going to Disney in October and I have been PRAYING AND PRAYING that I'd be able to get my diagnosis before then so I could go gluten-free, be comfortable and have a good time.

I am feeling horribly sorry for myself this morning, for which I apologize. I just gotta say it: PREPARATION FOR THE TEST REALLY STINCKS!

Usually my attitude is more positive but I have been through so very many years of this, finally am just -- with hope -- getting to the other side of it, and I just don't know how many more months of making myself sick I can take.

I can handle the other symptoms but the weight gain has been the breaker for me. I've kept over 100 pounds off for almost 17 years and the fear of having to deal with weight gain until I have to get to the other side of this is very difficult.

Okay, now that I've had my pity party, I'll continue with a better attitude . . .

What you say is excellent informaton and very much appreciated. I just pray that I will get an accurate reading and won't have to start all over again.

Do you have a favorite book, article or pamphlet that you give to family or friends when they want to know more about gluten-intolerance or Celiac? -- Something fast, friendly and easy to read that helps them understand that No, a person can't have just a little bit now and then?

Short version: Once a person has gone gluten-free, is it normal to have a heightened sensitivity to gluten?

Optional: Here's the long version:

I am currently eating gluten every day in preparation for a Celiac test in August.

Prior to this, I would have days where I would eat gluten and days were I would not. Some days, I thought I wasn't eating gluten but in fact was probably eating hidden gluten - and on those days I would be symptomatic.

Then I studied about true gluten-free eating, and for a two week period I tried to go gluten-free.

During those two weeks, my symptoms disappeared except for when I accidently ate gluten twice. On those two times, my body exploded with GI problems.

Then, University of Chicago told me that I needed to eat gluten every day -- a couple slices of bread would do, in preparation for the Celiac test.

For the first couple weeks, I was really uncomfortable, but now my heightened sensitivity seems to be less, which I find confusing to say the least!

It seems as though once I go without gluten, my sensitivity increases.

My questions:

1- If a person is eating gluten every day is it normal for heightened sensitivity (in some people - I understand everyone is different) to subside a bit?

2- Once a person has gone gluten-free, is it normal to have a heightened sensitivity to gluten?

Thank you,

Lyn

I was morbidly obese for many years.

As a child, I remember thinking, "Why can other kids eat a sandwiche, chips, milk for lunch . . . maybe even a Twinkie . . . and not gain weight?" It never made sense to me.

AND, I was as active as them, but I was always the nerd-fat-little-girl, even though I ran and played with the best of 'em. The only time anyone wanted me on their team was when we were playing red-rover, because I was always the chubby one who could break through the line.

Then, as an adult, I gave up and ate too much. I figured, what the heck . . . if nothing I do makes any difference, I might as well gorge and enjoy it. Sad, but true.

Later, I lost over 100 pounds and managed to get back to the top end of my BMI, but it was hard to do it sometimes. Looking back, I think gluten made it difficult. I struggled horribly when I would eat any refined foods. Once I went whole-foods only, I did okay. Pasta was a no-no, even if whole wheat. I did eat whole grain bread, but I did better on the weeks when I didn't have it.

Other whole grains were fine, however. Those that did not contain gluten. I didn't know it at the time, though, and just kind of hunt-and-pecked my way through things.

I am currently having to eat gluten every day for many weeks so I can be tested for Celiac. All I can say is that when I am gluten-free or near gluten-free, I can lose weight. When I eat gluten, I struggle so much it brings me to tears.

Case in point: I have gained 15 POUNDS in the last few weeks since having to eat gluten every day, and it is REALLY, REALLY HARD to keep going . . . but I know I must. I can get through this. Yes I can.

I have read that some people hold on to calories in an effort to survive. That is, your body and brain understand that your upper intestine isn't absorbing nutrients . . . so when the food reaches the lower intestine, it does everything it can to hold on to every gram of fat, every calorie, in an effort to keep you as healthy as possible.

I don't know if that is true, but it sure feels as though it may be true for me. Time will tell as I get my test results. In the meantime, please know that you have a friend here who cares most deeply and understands.

I am sending you hugs and best wishes!

Love,

Lyn

Since there were no replies, I moved this post to post-diagnosis. Thank you! Here it is again for reference:

I am currently eating gluten every day in preparation for a Celiac test in August.

Prior to this, I would have days where I would eat gluten and days were I would not. Some days, I thought I wasn't eating gluten but in fact was probably eating hidden gluten - and on those days I would be symptomatic.

Then I studied about true gluten-free eating, and for a two week period I tried to go gluten-free.

During those two weeks, I accidently ate gluten twice, and my body exploded with GI problems.

Then, University of Chicago told me that I needed to eat gluten every day -- a couple slices of bread would do, in preparation for the test.

For the first couple weeks, I was really uncomfortable, but now my heightened sensitivity seems to be less, which I find confusing to say the least!

My questions:

1- If a person is eating gluten every day is it normal for heightened sensitivity (in some people - I understand everyone is different) to subside a bit?

2- Once a person goes gluten-free, are the symptoms worse if gluten is accidentally eaten?

Thank you,

Lyn

Ravenwoodglass,

I want to thank you most dearly for all your posts -- here and elsewhere. They have helped me so much.

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.

Yes, it can be a real nightmare. You're soooooo not alone!

With the numbness and the tingling going on you should get some sublingual B12. Make sure it is gluten free and make sure it is sublingual (dissolves under the tongue). The B12 should help with that and it will help your nerves 'heal' more quickly as it helps them to fire correctly.

My nervous system issues impacted me much like MS, in part because I have gluten ataxia and because of that I have issues with balance. I also had memory problems and mood issues, some of which has resolved but not completely.

Celiac can cause nutrient deficincies so it is likely the celiac caused the low D not vice versa.

Thank you for the advice on the sublingual B12. I will try it.

Counting the days here until I see the Doc. I just want to know!

Beans contain both starch and sugar which can be hard for celiac's to digest. You can try soaking them for no less than 12 hours - then rinse them thoroughy - and throw out the water. Navy beans (white) have the least amount of starch.

Cross contaimination is an issue, however, more times than not its not cross contaimination - it's starchy and complex and simple carbohydrates that cause celiac's problems. Our villi are damaged and we may not produce the enzymes to split these complex starch/sugar molecules.

Good luck! Remember even a healthy digestive system has trouble with beans - thus the gas!

Thank you for this information -- very interesting. I had not read about that anywhere else before now. Much appreciated.

Hi, Evie:

Okay, so I'm bound and determined that we're going to be able to eat our much-loved beans no matter what!!!!!

I've been doing a little research, and it seems cross-contamination is a huge problem, both with dry beans as well as canned. With my one bag of red beans, I probably just lucked out and got a bag that -- so far -- might not have been cross-contaminated, but that doesn't mean the next bag won't be.

If you look at Bob's Red Mill, NONE of their dry beans are marked gluten free. Hmmmmm . . .

There are threads here and about that also discuss the cross-contamination issue. One member said she was going to grow her own beans to try to get what she needed. Thread here: Dry Beans, gluten free beans?

So, let's get on a quest to find some gluten-free beans! I love them as much as you do and am praying I can eat them once I figure this whole thing out.

Everyone else - any help here most appreciated! How do you deal with legumes?

Thanks for the response. I'm using dry beans...soak, rinse and cook. Makes me sad, I love my beans!

You might want to experiment with dry red kidney beans only - those seem to be okay for me. Maybe for you, too?

Yes it can, especially if it has attacked the nervous system. I got a lot of help with this from a physical therapist who specialized in patients with issues of that type. My nerve damage was severe so I do have some residual issues but I am much better than I was. Your doctor can give you a script for the PT and insurance should cover it.

Thank you so much for this information. I do probably have nerve damage - numbness in toes and tingling in legs and arms. Told carpal tunnel for years, and perhaps that's true but I'm wondering if Celiac might have more to do with it. Time will tell.

I would be interested in hearing more about your nervous system issues.

Wow, can't believe how long you went without a proper diagnosis . . . or maybe I can . . . I'm 55 and just now beginning to understand what might have been wrong with me for so many years, including dangerously low Vit. D count - chronic, less than 6 (50 - 70 is good), which also caused problems.

Not sure if the Vit D thing caused the possible Celiac or vice/versa. So much to learn, here.

THANK YOU SO MUCH! I hope others will post here as well.

A little background: I've been living about 95% gluten free since last year and had a a positive responsive, no longer suffering from constant constipation. It was like a miracle. I have IBS for at least 15 years now. It REALLY affects me 10-14 days before my period. I have severe colon spasms and fatigue as my worst symptoms. I try not to take my Donnatol because it just makes a zombie out of me and I have a full-time job where I have to think a lot and it's a terrible struggle. I've been doing a lot of reading here and other places, and got the basics down on celiac disease. I'm now going to (go back again) work at looking at other possible problem foods hoping I might still be able to improve my condition.

Today I'm hoping to learn from you that have problems with legumes and if constipation is a symptom, and any other experiences you'd like to share around that. Last weekend I made a big pot of chick peas and throughout the week it's been chick peas in salad, chick pea salad and hummus. So now it's time to limit the beans (at the very least) or maybe have to give them up (say it isn't so!) I've been noticing the bean problem throughout the year. I did have to give up split pea soup many years ago, I got terrible acid reflux from it--though I ate it with no problem growing up (I'm in my 40s). I don't get acid reflux from other beans though. Interesting.

Hello!

Are you using canned or dry beans?

I ask because, before I realized that I needed to be tested for celiac disease, I though beans were part of my problem. I had horrible lower GI symptoms (not constipation but instead loose stools). I was using canned beans and canned fat free refried beans.

I did have a couple weeks where I was gluten free (before having to go back on gluten so I can be tested) and during that time I was eating home-prepared beans without a problem, which gives me hope. I won't be gluten free again now until after I've been tested, so it is difficult to separate one from another.

That said, I do believe I have a problem eating canned legumes -- there may be cross-contamination issues.

Hello,

I know that diarrhea is a symptom of Celiac disease, but I am wondering: Has anyone here also suffered from bowel incontinence -- leaks that occur? Augh! Gross, I know. Sorry about that, but I just have to know if I'm not alone.

Thank you for any assistance.

Best,

Lyn

Hello:

University of Chicago told me that in prep for a Celiac test, I need to eat 2 servings of gluten a day for 6-8 weeks -- 2 slices of bread per day is enough.

Yet, I've read that more is required.

What is the norm?

I am new here and very, VERY thankful for this forum and everyone's help.

Best,

Lyn