Lynayah

I have a call into Walt Disney World, but I have yet to hear back. Does anyone here know if the hot cocoa at WDW -- the cocoa served at the dispensing machines where the refillable mug is allowed -- is gluten-free?

Thank you so much! We go this Friday and I am trying sooooo hard to find out.

Don't quote me, but at some point, I distinctly remember someone (ravenwoodlass, maybe?) saying that other countries recognize other genes that can cause celiac. You might have one of those genes.

Yes, thank you for posting this!

In other threads a few people have told me the same. I will definitely ask my doctor about it at my next appointment in November.

ABSOLUTELY!!! My back pain used to be so bad prior to my diagnoses that my doctors were 100% certain I had some rare kidney condition but they just could not figure out what it was. I would get pains so bad in my lower back on both the right and left sides -- but mostly the right side -- that I could not walk, it hurt to sit. I felt sick to my stomach, dizzy, and I ended up having to take pain killers a lot to get rid of it.

Now, since I've been gluten free for 6 months now, I've noticed when I've made "mistakes" on my diet and accidently eaten something with gluten, my very first indications are I start to get a little twinge of pain in my back and then my joints hurt REALLY bad (like I have arthritis), then the stomach issues, and then I have a headache, irritability, and fatigue for a week and a half.

Yes! When I did my gluten challenge, there were a few days toward the end when I would experience horrible sharp pain in my kidney area. It would almost cripple me . . . and then it would subside a bit after a while. Thank you for sharing this.

Agreed.

Regarding the "floaters": it is my understanding (and someone please correct me if I'm wrong) that even though you tested negative for celiac, you can still be gluten intolerant, you can still have malabsorption, and this would account for the floaters. Likewise, since you've gone gluten-free you most likely are absorbing better and thus no floaters.

As far as the genes go.....I know there are people without DQ2 or 8 that definately have gluten issues. I don't think you have to have those two to be celiac, it's just that ninety some percent of diagnosed celiacs have one or both of those.......but there are many more undiagnosed, maybe they all have a different gene or cannot test positive on the currently available methods of testing? Or maybe those who are fortunate enough to be tested positive do so because of something on DQ2 or 8?? There is much more research to be done. Listen to your body.

That's a really good point -- I thought that only with true Celiac malabsorption was an issue. I hope someone here will know for sure. Thank you!

Oh wow this happens to ME! I was diagnosed in August and I have been gluten free until 2 days ago. My kids asked for cookies at the store. Normally I would make them myself but I said ok to the treat. Well of course the kids wanted one now. I put one in my mouth w/o thinking!! I had to RACE home to go to the bathroom, had back pain and shoulder pain for the remainder of the day. I NEVER thought that it could be from the gluten.

Yes, it is indeed surprising. I'm so grateful to finally finding a possible link between my pain and what I eat. Wow.

Hoping more will post here.

Hi, mistyping and running the wrong tests are not so uncommon.

By teh way, the person with the mistyping on DQ8 also ordered a gene test from Enterolab, since they tell you what gene you have, not just positive or negative. Enterolab found the DQ8 too.

They send their gene tests to the American red Cross.

But Enterolab does not test for the alpha chain, and misses all the 05* alpha chains. DQ7 often has a 05* alpha chain.

That is half a DQ2 celiac gene, and there is an increased risk for celiac.

Kimball tests for the alpha chain, but does not tell you what gene you have other than DQ2 or DQ8.

Dr. Hadjivassiliou found that 20% of his gluten ataxia patients were DQ1.

So, gene tests also have their limit.

If you do a search here, a person with the handle half full had access to the full versions of scientific papers, and posted all the other genes found in celiacs from a paper where they tested over 1000 european celiacs. There wer many with half genes, I think 6%, and 1-2% with other genes than the celiac genes.

Maybe you find it when checking my replies, as I replied in that thread.

They only contribute with about 40% of the risk for celiac.

nora

Wow -- I must admit that I do not have your understanding of tests, etc., but I most certainly understand the rest.

I am being beyond careful and treating myself as if I have Celiac, just to make sure all will be well. Thank you so much for your incredible information, and if you are ever willing to speak personally please email me through this website.

BIG HUG,

Lyn

I too have had "poop" questions, so I'm curious as to what people think about this. Mine float almost all the time and are hard and round too...but I don't know for sure if that means anything.

I'm curious if they told you what genes you do have? I've seen evidence (individuals on this forum and in articles) that those that don't possess DQ2 or DQ8 can sometimes still get celiac. I don't have these genes, and am self-diagnosed gluten intolerant, but my dad has celiac, and my brother and sister are both gluten intolerant (self-diagnosed as well - they just never went to the doctor to find out about it). While I'm the only one that has had gene testing, in my experience, it seems unlikely that we'd have so many intolerant people in our family without some genetic involvement of celiac disease here. Just my experience, for what it's worth. That, and I had low B12 levels prior to going gluten-free, in spite of a healthy diet with vitamin supplementation. That signals malabsorption, celiac disease or not.

My thoughts are - they don't definitely know how to diagnose celiac in all cases. You just have to listen to your body, and regardless of whether you're a celiac or not, you sound like you're on the right track, with a gluten-free diet, and it does sound as though you're healing, so that's great.

Great post, thank you. I believe you are absolutely correct, the medical community (even the more advanced part of the medical community) does not have all the answers. We here are in the forefront of what will eventually be a much greater understanding of Celiac.

It is so sad that without there being a drug so the drug companies can profit, there is no marketing and a horrible lack of info.

My gene test came back negative, but I not not yet have a copy of the lab results. I go to the doctor in November but will try to get copies faxed to me sooner.

Wow -- your case is particularly interesting, with all the family history you have.

This sure isn't easy.

I am beginning to realize that I should keep a notebook or spreadsheet of my dining experiences. I was thinking of going back to Golden Corral this weekend, and I almost forgot the manager's name.

If I keep everything noted, I can remember the names as well as tidbits about the experience so I can give additional thanks.

If I don't write it down, I'll forget it. I guess I still have brain fog!

Thanks for starting this topic!

Nasalady,

You're welcome! And thank you (and everyone here) for posting. This is going to be a fun thread.

PS: I see you will have your one year gluten-free anniversary next month. Congratulations on getting through the first year!

This is all so frustrating.

Googles,

Have you ever read about the stages of grief? All that stuff about denial, anger, etc., and you have to experience them all before you get better?

Well, from what I've learned so far, dealing with gluten-intolorance can be very similar, emotionally. Getting frustrated and mad as hell is a step in the right direction, so as odd as it may sound, the feelings you're having are going to help you to get to the other side of this!

SO, GO KICK A LOAF OF BREAD!

And then come back here, again and again, because folks around you might not always understand what you're going through, but we do.

What are your gene results?

There are many people here who are celiac or undiagnosed , and who do not have the DQ2 or DQ8 genes.

Some are mistyped.

One DQ8 was mistyped as negative, and then confronted the lab with teh fact that her son was DQ8 and celiac and that she was diagnosed years ago with viopsy and a highly positive blood tests, and they sent hte sample to another lab and it was positive for DQ8. the tests for DQ8 are not that sensitive.

The biopsy can just sample the wrong area, and miss celiac.

Have you by any chance taken any steroids recently? Those are famous for causing wrong negative biopsies.

Sometimes when your read the actual biopsy result, it says you are celiac but they did not spell it out and the doctor thiks that means it is negaive. Blunted villi is celiac, but the doctor miss that because the report did not spell out celiac. Increased Intraepitelial lymphocytes is celiac, but the doctor may miss that too. Did you see the actual report?

If you are DQ1, you can be extremely sensitive to gluten, and more sensitive than the DQ2's.

nora

Nora,

That is very interesting.

I haven't yet read the reports directly . . . but I will. I spoke with a nurse who gave me the results - she said my antibodies are high but the gene test (as well as the biopsy) came back negative.

I am going to the Celiac Center at the University of Chicago -- many, if not most, of the blood tests are sent to Mayo -- I would pray that they are reading them correctly since they specialize in Celiac, but it is DEFINITELY worth checking. Thank you!

No steriods so that's not a problem here, thank goodness . . . although I felt as though I were on the darn things when I had to do the gluten challenge -- increased hunger, bloating, weight gain. Augh. <Laughing>

It is frightening how easily a misdiagnosis can occur -- I hope many others read your post so they, too, take extra precaution to make sure they're being given the right information.

Case in point: A different doctor at a different clinic blood tested for Celiac last year, but -- as best I understand it -- the doctor did not properly check my antibodies and overlooked the gluten sensitivity. I was HORRIBLY sensitive to gluten, but because the initial Celiac blood work came back negative, he told me I was fine. It was quite a struggle until now because I kept becoming increasingly symptomatic.

I'm still healing -- only gluten free for a few weeks now with a couple set backs.

Last week I was glutened and the neurological twinges in my feet and ankles were strong. It's weird, in addition to the tops of my feet hurting and ankles swelling, I'll get a kink that comes and goes -- when it is present, it feels as though I have a light sprain in my ankle, and it can stop me cold. Sometimes it lasts for days, other times it comes and goes over the course of hours. During my gluten challenge, it became stronger over time.

Yep. And head, shoulder, joint, muscle, eye, tmj, and every other conceivable place pain. Evil Evil gluten.

My hip pain is particularly bad at night. So much so, that when I have a flair-up, I have to get out of bed extra early just to deal with the pain.

In the past the pain would come and go. In retrospect, I see that my worse problems might have been when eating gluten without knowing I was gluten-intolorant.

I did a many-week gluten challenge and oh my gosh, the symptoms!

I have only been gluten free for a few weeks, and I am praying that the hip and lower back pain will once again get better.

I also pray I'll be able to lose the 15 pounds that came on during the challenge. The first couple days I dropped some weight but have been stuck since. I think it is taking my body more time to adjust than I thought it would. The extra weight cannot help my pain, that's for sure. So maybe it is a combination of both.

So glad to be gluten-free again!

Here is the thread about being assertive with restaurants: https://www.celiac.com/gluten-free/index.php?showtopic=62129

This is a thread about being assertive and asking for what you need. This is where you can post your experiences when dealing with dining establishments OR when eating at work, parties, friends homes, etc.

If there is already a thread just like this, please let me know.

The purpose here is for all of us to work together to help each other learn to be more assertive in asking for what we need.

I posted this experience in another thread and will post it here to get things started. It was in response to a forum member complaining about the lack of assistance some restaurants will give:

I find it amazing how helpful some restaurants can be if you call and speak with a manger first -- not the chef but the owner or top manager (the person who would have to deal with libility).

It is interesting that some restaurants I would never have assumed would be helpful have indeed been very helpful.

A couple weeks ago, my husband and I went to a moderately-priced buffet (Golden Corral). I called and spoke with the head manager who was so incredibly kind! He listened to me, REALLY listened, and he promised me he would prepare a freshly butchered slice of sirloin steak on a dedicated grill, with no marinade or spices added whatsoever.

He also promised to prepare any fruits or veggies fresh if needed, in case I was worried about buffet cross-contamination.

And this was in a restaurant where they didn't even know what gluten-intolorance was until I spoke with them.

My meal was fine -- delicious and free of symptoms afterwards.

Other managers at other restaurants have been equally wonderful in telling me that, while they cannot guarantee that any food won't be cross-contaminated, I am welcome to bring my own food. This allows me to attend dining parties or club meetings with no problem, and with no burden on those booking the restaurant.

I guess the bottom line is to keep calling, keep trying. If enough restaurants get enough calls, they'll start to listen.

I'm very new to having to be gluten-assertive, although I've been very weight-loss assertive in the past, so I guess I have a lot of practice.

I've found that if you expect people to care, most often they will.

Here is one of my favorite ways to introduce the topic when I call a restaurant:

First, I always ask to speak to the head manager. I always tell the person who answers the phone exactly why I am calling -- this is important. I say that I am coming into dine -- and looking forward to it -- but I have serious dietary restrictions and need to speak to the head person in charge.

If you do not tell them why you are calling, the staff often assumes you're calling to complain about something, and they put you through to an assistant manager instead. Health concerns get you to the top very quickly, and you won't be put on hold a gazillion times!

Then, in my most friendly voice (smile as you talk, people WILL hear it), I say, "I have some extremely serious dietary restrictions, and I'm looking for a restaurant manager who's willing to be my hero (alternately I might say "who's willing to help make my life easier) -- I get very sick if I eat gluten . . . and I would like to dine in your restaurant tonight, might you have time to help me sort things out?"

Always get the manager's name so when you go in you can tell the wait staff that you talked to him/her.

Oh my gosh, this has worked so well that I almost feel like I'm best friends with managment by the time I am done! People are wonderful if you just give them half a chance.

What works for you?

I just wish they would get some decent eateries to open so my husbaand and I could enjoy a night out. We have one rest. by us and we talked to the chef and he wont alter the food to make it eatible for celiacs, Well needless to say they wont get our business. It's something as simple as a baked chicken--he wont bake it without the flour seasoned coating---CRAZY!!!!

Restaurants: I know what you mean. Some won't budge.

Yet, I find it amazing how helpful some restaurants can be if you call and speak with a manger first -- not the chef but the owner or top manager in charge (the ones who have to deal with libility).

It is interesting that some restaurants I would never have assumed would be helpful have indeed been very helpful.

A couple weeks ago, my husband and I went to a moderately-priced buffet (Golden Corral). I called and spoke with the head manager who was so incredibly kind! He listened to me, REALLY listened, and he promised me he would prepare a freshly butchered slice of sirloin steak on a dedicated grill, with no marinade or spices added whatsoever. And this was in a restaurant where they didn't even know what gluten-intolorance was until I spoke with them!

Other managers at other restaurants have been equally wonderful in telling me that, while they cannot guarantee that any food won't be cross-contaminated, I am welcome to bring my own food. This allows me to attend dining parties or club meetings with no problem, and with no burden on those booking the restaurant.

I guess the bottom line is to keep calling, keep trying. If enough restaurants get enough calls, they'll start to listen.

In fact, I think I'm going to start a thread about this. I'll post the link once it is up.

Hugs,

Lyn

Does anyone here suffer back pain or hip pain when gluttened?

Probably not what you want to hear but dairy can bother celiacs until there digestive system has repaired. If you find you just can't stop the dairy you could try taking a Lactaid to see it that helps. Lactaid is a brand name but most drug stores carry a store brand which worked for me. No prescription needed.

I did this when I first went gluten free. I just couldn't bear giving up more food items at one time. I did go dairy free for several months once I figured out the gluten free foods. Now I'm able to tolerate dairy products without problems.

It is worth the trouble. I found I couldn't tolerate dairy, soy or pork before going gluten free. Now pork is the only thing that bothers me. It's not always but some pork meat produces gluten symptoms now still.

That's interesting about dairy! I did not know that it might be difficult to digest at first but later get better (unless intolerant to milk, of course). Thank you.

Just to add to the thread, I am just now (thanks to this forum) learning that there are some folks who have a difficult time handling MANY gluten-free carbs and who must follow what is called a Specific Carbohydrate Diet https://www.celiac.com/gluten-free/index.ph...=62006&st=0.

So much to learn, here!

Okay, I don't know how else to ask this question without getting too "Augh, GROSS!", but I'll do my best . . .

I have recently been diagnosed as a highly gluten sensitive non-Celiac. All the results for a definitive diagnosis of Celiac were inconclusive until my last test - the gene test -- came back negative.

My question is: Can pre-diagnosis non-Celiac bowel movements be the same as Celiac bowel movements?

Mine (when they weren't full blown diarrhea) were either small and hard or large, kinda fluffy, light in color -- most all of the varieties floated. I thought this was only supposed to happen when your body is not absorbing nutrients properly and the fat passes through? Yet, if I do not have Celiac, my body shouldn't have been rejecting nutrients, yes? No? I'm so confused.

I have been gluten-free for a few weeks now, and finally my bowels have already become more normal -- darker and they do not float.

Yes, I know I need to ask the doctor, and I plan to on my next visit in November. In the meantime, any thoughts from friends here would be most appreciated.

Thanks for letting me give you the straight poop on this!

Thank you for all the posts here!

You'll find the thread under "Other Food Intolerance and Leaky Gut Issues". It's called Specific Carbohydrate Diet (SCD). If you read parts of it, they do recommend web sites and books. I haven't read the books yet but have looked at some of the sites. It's good. I'll defer to the SCD experts on that thread.

THANK YOU, THANK YOU!

Hugs,

Lyn

When I am unsure, I eat whole foods only and keep a diary (as suggested earlier). By whole foods, I mean meat, fruits, veggies and brown rice or another gluten-free whole grain or legume (red kidney beans work best for me), and that's it.

I slowly add one food at a time -- no more than one every other day, and I watch and see.

Some folks are sensitive to starches legumes, so you might want to add these later and see.

It's hard, I know, I know. Sending a hug.

PS: I tried to find the thread about SCD but the search function wasn't working for me. Might you post the link? Thank you so very much.

PS: Are tomatoes a nightshade?

Hey, I'm glad to support you and I totally understand being given drug after drug. I don't want to treat symptoms, I want to find the root problem and reverse it!

I wanted to mention several things to you that I have read from other posters regarding the pain of inflammation. I already mentioned that much of my pain was related to eating grains and many others here have said the same. Many have found relief in the SCD and there is a long thread in the forum discussing it. I'm not completely on the diet but I have gained a lot of insight from reading that thread. Others have found relief from adding Vitamin D3, magnesium and the methyl type of sublingual B12 to their diet. I also take those and they are a huge help. Stay off your meat products for now but later when you are better, you could challenge those. You may be able to eat some again. But that is down the road.

I don't remember if you said you are off dairy, but you should also avoid that for now. Others that are sensitive to nightshades report pain from them. You will have to experiment with that one. Nightshades are potatoes, peppers and eggplant. Don't forget paprika which is from a pepper.

I'm not saying all these are your problem. I'm saying they might be. Start on a very simple whole food diet that you prepare yourself. Stay away from prepared or processed foods. Research all you meds and make sure they do not have gluten or dairy fillers. Start at a low dose of magnesium and work your way up to about 600 mg's. I take more but you have to find the level that works for you. Soak in epsom salt (magnesium) baths for pain relief.

I know you can do this. You are going to be your new dr! Keep a food journal, write down everything you eat, drink or supplement. Note your reactions and pain levels. This can be very helpful to pinpoint food problems. Find a glue that does not have gluten and get rid of everything, EVERYTHING around you that has gluten. This is your new birthday.

Ang1e: What books are available on SCD? What would you recommend? Thank you!