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Mcdonald's French Fries Not Safe?


pixiegirl

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tiredofdoctors Enthusiast

This thread is becoming like road kill for me -- don't want to look for fear of what I'll see next, but can't NOT look. To all of you who have In-and-Out burgers, you have now idea how extremely envious I am right now. I can remember that on trips to California, I would order a regular burger and the guy I was dating would say "she wants a double double" -- oh my gosh -- talk about a great burger! At any rate, I'll keep reading each day, a couple times a day, because, basically, I can't stop myself. Hugs to you all . . . Lynne


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Guest nini

celiac3270, you were decieved... we all were. I've been there with you defending them when people were asking about them being contaminated.... "OH NO" I reassured them, you can trust them, they are safe... BAH :angry:

I am still shaking from the conversation with my daughter where she cried her eyes out over FRENCH FRIES... They do not know who they are messing with. They do not know what this means to the children with Celiac and wheat allergies and gluten intolerance... THEY HAVE NO IDEA.

My child is upset. I'm angry. We've been betrayed. THEY LIED TO US.

jkmunchkin Rising Star

Are you f'ing kidding me!!! I can't tell you how many times I would go out and get McDonld's fries and a chocolate milkshake for a snack. I am so incredibly pissed about this. To be honest I always felt kinda sick after eating them but I just figured it was the grease and figured as long as they were safe this was one normal food I was not giving up. I am so incredibly furious and sad right now. Some poor customer service person is definately going to feel the wrath of me tomorrow. I don't care if he/she is not the one directly responsible, I'm pissed!

lovegrov Collaborator

"According to Mcdonald's website last night, the bacon contains wheat.....unless that was a misprint too."

Um, folks, the McD bacon has ALWAYS contained wheat and it's ALWAYS been clearly listed. It's also been common knowledge on all the celiac groups. If you weren't aware of it, you weren't checking things carefully. The bacon has never been on their gluten-free list and the ingredients have always listed bacon (at least in the U.S.).

I'm personally somewhat stunned by the hysteria going on here and in other forums. To me, it appears from everything McD has said that they had every reason to believe their fries were gluten-free and probably in fact still believe so. But they're trying to follow the letter of the law AND trying to avoid lawsuits. With good reason. People on various lists and forums (including here) seem to be planning class-action lawsuits.

For those of you who are now absolutely sure that when you took your child to McD and he or she then had a reaction it was because of all the undisclosed gluten in the fries, I say that's nonsense. Eating at any fast food place is just about the most risky thing you can do as far as cross contamination. I do it myself sometimes (usually Wendys or Hardees), but nobody should be surprised or dismayed when there's a reaction from a fast food place. If you take yourself or your child to any fast food place, you're taking a chance, a big chance.

richard

tiredofdoctors Enthusiast

First off, I don't think we're planning a class-action lawsuit, and neither are we are we "counting our money or planning to bankrupt McDonalds". I don't, however, think that it should be O.K. with ANYONE that when you go to a fast food restaurant you're taking a big chance with either your health or the health of your children. I think that McDonalds has vascillated with regard to its ingredients listing on several occasions, and somewhere, somehow -- even if it's through monitoring through the FDA -- they should be held accountable. As far as following the letter of the law -- what about following the spirit of the law as well?

Everything in life isn't as black and white as your posts make them appear. This one is right. That one is wrong. That one is rediculous. These are parents who are very concerned about the health of their children, and rightly so. They are trying to give them as "normal" a childhood as possible under circumstances which are less than optimal. 99.9% of kids go to McDonalds. It's just the way it is. These parents want to make sure that if and when their children get to go, they are medically safe.

Hysteria? You bet. Until you've held a very sick child in your arms in the ER, wondering what to do and feeling absolutely helpless about it , you haven't hit the tip of the iceberg of worry -- under those circumstances, however, it's just controlled hysteria.

psawyer Proficient
"According to Mcdonald's website last night, the bacon contains wheat.....unless that was a misprint too."

Um, folks, the McD bacon has ALWAYS contained wheat and it's ALWAYS been clearly listed. It's also been common knowledge on all the celiac groups. If you weren't aware of it, you weren't checking things carefully. The bacon has never been on their gluten-free list and the ingredients have always listed bacon (at least in the U.S.).

I'm personally somewhat stunned by the absolute hysteria going on here and in other forums. To me, it appears from everything McD has said that they had every reason to believe their fries were gluten-free and probably in fact still believe so. But they're trying to follow the letter of the law AND trying to avoid lawsuits.

With good reason. People on various lists and forums (including here) are already planning class-action lawsuits and either counting their money or hoping to bankrupt McD.

For those of you who are now absolutely sure that when you took your child to McD and he or she then had a reaction it was because of all the undisclosed gluten in the fries, I say that's nonsense. Eating at any fast food place is just about the most risky thing you can do as far as cross contamination. I do it myself sometimes (usually Wendys or Hardees), but nobody should be surprised or dismayed when there's a reaction from a fast food place. If you take yourself or your child to any fast food place, you're taking a chance, a big chance.

richard

All good points, Richard. At this point the only thing we know for sure is that there is a h*** of a lot that we don't know for sure. Risks are everywhere. Every plant product you acquire should have the warning, "Grown on a planet where wheat is grown."

I do remain concerned and interested in this issue. And I wonder what did McD know and when did they know it?

VydorScope Proficient
For those of you who are now absolutely sure that when you took your child to McD and he or she then had a reaction it was because of all the undisclosed gluten in the fries, I say that's nonsense. Eating at any fast food place is just about the most risky thing you can do as far as cross contamination. I do it myself sometimes (usually Wendys or Hardees), but nobody should be surprised or dismayed when there's a reaction from a fast food place. If you take yourself or your child to any fast food place, you're taking a chance, a big chance.

richard

Read the old posts here, I have been caliming their fries have had wheat in them for a very long time. I have never seen from my personal expernces with them any reason to think they did not. I came under ALOT of fire here for it, and in the intrest of trying to be helpfull to the other readers eventaully let ppl calim it was CC, nad not aruge it.

Richard, I respect you alot, you are always well informed, but I think in this case the facts support a conculsion other then yours. I think the facts clearly support thier fries have always had wheat in them, and for some yet unknow reason they considered them gluten-free.

Many other resturants have wheat in thier fries, in fact it seems like most do so its not exactly odd or unusal for this to be.

All I ask is they release a statement explaining the situtation covering...

1) A reasonalbe applogy for the situtation

2) Why this was never mentioned before the new law forced it

3) What they plan to do to prevent this kind of confusion/mistake in the future.

I do no tthink that is unreasonable, I get demands like that form my clients when *I* mess up. (or one of my vendors, which still makes it my fault form my cleints point of view. ) I am not asking anything I would not be willing to do.

Now if they want to send me billions of dollars I wont turn it down, LOL but I do not plan to sue. I personaly knew it had wheat in it, and avioded it and recomeded others aviod it.


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bluelotus Contributor
"According to Mcdonald's website last night, the bacon contains wheat.....unless that was a misprint too."

Um, folks, the McD bacon has ALWAYS contained wheat and it's ALWAYS been clearly listed. It's also been common knowledge on all the celiac groups. If you weren't aware of it, you weren't checking things carefully. The bacon has never been on their gluten-free list and the ingredients have always listed bacon (at least in the U.S.).

I'm personally somewhat stunned by the absolute hysteria going on here and in other forums. To me, it appears from everything McD has said that they had every reason to believe their fries were gluten-free and probably in fact still believe so. But they're trying to follow the letter of the law AND trying to avoid lawsuits.

With good reason. People on various lists and forums (including here) are already planning class-action lawsuits and either counting their money or hoping to bankrupt McD.

richard

I only wish things were as simple as you make them appear. I had made a mention of a lawsuit, as a joke (see my sarcastic comment). I don't appreciate the comment that I want McD's money, I am quite happy with my own, thanks much. I don't even eat at McD's, so I couldn't be involved anyway. My point was that unless you are certain a product is gluten-free, it shouldn't go on the list (and this can entail a whole new argument as well - what defines gluten-free, how do you test, etc.). I don't count myself hysterical either....but rather intrigued that this finally happened (I figured one of these days these some of these more mainstream, mass produced products would be called into question). Whatever....I'm too annoyed to respond in a concise, polite manner right now. I don't know if you are just too blunt or not tactful in your comments, but I predict that some will take offense with your tone.

VydorScope Proficient

TiredofDoctors,

I realy realy realy realy wish I could not relate to your story, nor understand how you felt there. :(:( But I can....Thank God those days are behind us!

cgilsing Enthusiast

The "hysteria" here is due to the fact that McDonald's has been assuring us for years that their fries were safe to eat and were fried in dedicated friers to insure our health. There were many many people who ate those fries on a regular basis in good faith that the McDonald's corporation had their and their children's best interest in mind. Now we have found out that although McDonald's had the resources and capabilities to identify a cause for concern, they either neglected to do the research, or just plain neglected to tell us. I don't think anyone is calling their lawyers and counting their money, but I do think a lot of people are rightly upset. Companies in the food industry (especially companies as prominent as McDonald's) have a responsibility to their customers to provide accurate information! Tiredofdoctors is right. There is nothing wrong or neglectful on the part of parents wanting their children to have as normal a childhood as possible, nor should it be considered irresponsible to trust the word of an international fast food giant. However we were deceived, and I think a little hysteria is in order. If it doesn't bother you, then don't call them. I think the rest of us will probably do enough calling for you.

Canadian Karen Community Regular

I'm personally somewhat stunned by the absolute hysteria going on here and in other forums. To me, it appears from everything McD has said that they had every reason to believe their fries were gluten-free and probably in fact still believe so. But they're trying to follow the letter of the law AND trying to avoid lawsuits.

With good reason. People on various lists and forums (including here) are already planning class-action lawsuits and either counting their money or hoping to bankrupt McD.

I still don't think that releases them from their obligation to back up their claim that their fries were gluten free. I honestly don't think they should be able to take the "Oh well, we didn't know it was in the cooking oil" stance. They have more than enough money to do their own investigating and they needed to make sure those fries were gluten free from farm right down to when the person behind the counter hands them over to you.....

For those of you who are now absolutely sure that when you took your child to McD and he or she then had a reaction it was because of all the undisclosed gluten in the fries, I say that's nonsense. Eating at any fast food place is just about the most risky thing you can do as far as cross contamination. I do it myself sometimes (usually Wendys or Hardees), but nobody should be surprised or dismayed when there's a reaction from a fast food place. If you take yourself or your child to any fast food place, you're taking a chance, a big chance.

richard

I think there is a huge difference between the possibility of the odd cross-contamination as opposed to eating gluten EVERY time you put McD's fries in your mouth....... The cross-contamination possibility is something we live with on a daily basis, it comes with the celiac territory. Finding out that EVERY time you fed your child McD's fries though, you were feeding them gluten, is a totally different story......

Karen

Guest nini

Richard... all I can say is I totally disagree with you, and the others have said it well... If you had seen my daughters reaction when I told her that we may not be able to eat McDonald's fries again because they "might" contain gluten, you would be singing a different tune. She was devastated.

happygirl Collaborator

Agreed.

It is one thing to risk cross contamination, but it is another thing to eat something that THEY knew contained gluten. I don't know one person here who would eat gluten willingly.

It worries me that people will still continue to eat fries because they "don't have symptoms." Shudder. Aren't the majority of Celiacs "silent Celiacs" meaning they have no symptoms, even if they eat pizza, bagels, cakes, etc.....

But the damage is still being done.

Canadian Karen Community Regular

If McDonald's knew (which they probably didn't, but that doesn't exonerate them because they they should have done the testing themselves before declaring their fries gluten free), they at best, would only be able to claim "low gluten" fries, just like the communion wafers. Then that would leave it up to the people to decide if they wanted to take the risk or not.

Karen

ryebaby0 Enthusiast

I think we don't want to derail the thread too much with contemplating whether people should be "hysterical" or not, or whether people's original "eat there " or "don't eat there" stance turns out to be correct. Sorta sounds like "I told you so". ....

If McD's had listed them as non-gluten-free, like Bk and Wendy's, I would have lived without them. Since they listed them as gluten-free, neither my son nor my husband ever reacted, and both of them still tested negative in followup bloodwork, I was not about to deny them one of the last easy, simple, pleasures left to them. You say it's "hysteria" to be upset, why wasn't it "paranoia" to avoid everything because of possible contamination? Should we have believed McD's ? Maybe not. Should we have stayed away? Apparently so. Were the "don't eat there" people correct -- apparently.

If I have to suspect every company's own information to the point of just not believing any of it from anywhere, I can't keep posting -- I'll be too busy planning the garden and tending the cows. :) No offense to those of you able to do that, btw, but not everyone can. (I suffer from BlackThumbItis, myself)

I just want the fries fixed. That's all. It is my son's icon of normality in a sea of styrofoam bread and lettuce wraps...... :)

Joanna

Cheri A Contributor

:rolleyes: Richard ~ I disagree completely with you...

I have not told my dd yet because I want to have the time to process this whole mess. She, like Nini's dd, is going to be VERY UPSET. She has many food allergies (see sig) and has to deal w/being different far too often, in addition to wearing a medic-alert bracelet, sitting at a peanut-free table, different foods from everyone else her whole life. We were diagnosed w/a wheat allergy and a rice allergy in October so I am very, very new to this. She has had SO many things taken away that were favorites. That was the last place that we could go w/friends and she could eat the same thing (ok, bunless hamburger now) as everyone else. Yes, there has always been a x-contamination issue to worry about. They LIED to us!!

teebs in WV Apprentice

For the record, the reason that I posted the comment about McDonald's website stating that their bacon contained wheat, is because someone posted a comment about the Chicken-Bacon salad being their favorite.

As for doing my homework, I do. I read every label, call every mfr if there is something that I am not sure of, and I do not rely on the delphi lists.

What makes me so ticked off is that I am VERY careful, and I TRUSTED that freaking list! I have only eaten McD's fries 3 times since being dx (that may seem like a lot to others, but compared to my previous life, that ain't nothin!). Each time I ordered them from the same McD's and each time I asked them to reassure me about the dedicated frier - which they did. That is what makes me mad - sorry if you can't relate.

I'm done with this one. I've sent an e-mail to McD's and I hope they fix whatever error they have made - we know that they made one - we just aren't sure exactly what is an error and what is deceit.

jkmunchkin Rising Star
As for doing my homework, I do. I read every label, call every mfr if there is something that I am not sure of, and I do not rely on the delphi lists.

What makes me so ticked off is that I am VERY careful, and I TRUSTED that freaking list!

Exactly!!!! As someone that is still fairly new to this diet (about 7 months), I have made it my life to be incredibly careful. I would NEVER willingly eat something that had gluten in it. I trusted McDonald's to be telling the truth everytime I ate their fries. To be honest I trusted them even more than some small establishments. I figured as one of the largest corporations they would be extra careful not to deceive people. I have total viloscopy (sp?) of my intestine, and as my health is the most important thing to me, I have been beyond diligent to ensure my body returns to a healthy state. The fact that McDonald's can have such a "ooops we didn't know" attitude is infuriating.

I'm upset as a 28 year old. I can only imagine how upsetting this is for parents of children.

lovegrov Collaborator

"I don't, however, think that it should be O.K. with ANYONE that when you go to a fast food restaurant you're taking a big chance with either your health or the health of your children."

You're still not getting part of what I'm saying. Going to any fast-food restaurant is without question one of the riskiest things you can do as far as cross contamination. Period. If you eat at a fast food place or take your child there, you are taking a major chance of contamination every time. There's a woman on delphi who used to own four fast food places and still owns a fancy restaurant that has a special gluten-free menu, including pasta. But she refused to eat at even her own fast food places. At HER OWN.

I'm not telling anyone not to take that chance; I eat fast food every couple of months or so, and if my son had celiac disease I'd let him do it occasionally. Given what I've read and heard from the company, I'd still let him eat the McD fries (except they he despises McDonald's). But don't kid yourself that it's somehow safe because they have a gluten-free list or because you see the kid in the back change gloves.

If you read what McDonald's has been telling people, they still believe that the fries are gluten-free. And most people here -- with a couple of exceptions -- have been eating the fries or letting their children eat the fries with absolutely no negative consequences. Nothing has changed about those fries. I will not be eating the fries myself, but that because I really, really dislike McD food and I didn't eat there even before celiac disease.

Mission Foods also changed some of their corn tortilla packages to list wheat simply because there was a slight, remote chance of wheat contamination and they were afraid the FDA would come after them if they didn't. Then they realized they were being silly and they're taking the warning off. I don't see that the McD CYA is any different. Studies suggest you're taking a much bigger chance just eating any processed foods that aren't supposed to have gluten. About 20 percent of those foods in fact have measureable gluten.

People on celiac boards all over are seriously talking about lawsuits, so when it was mentioned here I didn't take it as a joke. I apologize for going overboard on that point. I misunderstood and I also apologize for suggesting that anybody wanted to make money from this (although I guarantee there ARE people out secretly considering that). I will go back and edit that out.

"Hysteria? You bet. Until you've held a very sick child in your arms in the ER, wondering what to do and feeling absolutely helpless about it , you haven't hit the tip of the iceberg of worry -- under those circumstances, however, it's just controlled hysteria."

I hesitate to reply to this one but I will, because I not only know about the tip of the iceberg of worry, I know the very depths of it. Thirteen months ago I drove four hours to hold my dying 18-year-old daughter after she collapsed from a still unexplained cardiac arrest while on a practice run with her college track team. We watched her fade for two days before turning off life support. And I will worry every day of my life that the same thing could happen to my son. I know you didn't know about this and meant no harm, and I know you were scared sick when your son was so ill.

richard

VydorScope Proficient
And most people here -- with a couple of exceptions -- have been eating the fries or letting their children eat the fries with absolutely no negative consequences.

I disagree. MOST ppl refused to blame gluten. They blamed "fired foods are bad" or diary, or this or that, but when I would point out the fires have gluten in in them, they went on the attack to defend thier fries.

Sorry Richard, but reality needs to sit in, and that reality is that McDonalds fries have always had gluten in them, and as we know the absense of symtons are a POOR indicator of the absence of gluten. McDonalds may honestly belive their fries are safe, I am willing to accept that over them out right lieing, but the facts are clear, and McDonalds no long denies they have had wheat in thier fries, JUST LIKE MOST OTHER FAST FOOD JOINTS, all this time.

You are welcom to continue eating thier foods if you like, I certinaly will stick to my postoin of not eating their fries, and my son will just grow up knowing that McDonalds fries have wheat in them, just like McDonalds now admits.

People on celiac boards all over are seriously talking about lawsuits, so when it was mentioned here I didn't take it as a joke. I apologize for going overboard on that point. I misunderstood and I also apologize for suggesting that anybody wanted to make money from this (although I guarantee there ARE people out secretly considering that). I will go back and edit that out.

On this point I 100% agree with you. Tahts the nature of our country. Dont like somting? SUE!!!!! GET RICH!!! WHOOHOO!!!

Bah!

EDIT: Richard, I hope I do nto sound liek I am atttacking you, I highly respect you and your opinions, I just disagree with you on this case. :D

lovegrov Collaborator

Here' s a perspective from Bobbie on another list. I know Bobbie and she is extremely cautious. She almost never eats out.

>>I decided to call McDonald's to see if I could sort this out.

Here's what I found out:

Nothing has changed about the fries. They have not added wheat to

them. They are exactly the same today as they were last week. What

has changed is the information that is being given to us in compliance

with the new law.

Their supplier has advised them that the natural flavour that is used

in the oil that is used prior to their being frozen and shippped has

remants of wheat and dairy in it. The oil is then processed such that

the protein is removed, so that the supplier believes that the oil is

actually gluten free.

Given this information, I think that it is highly unlikely that there

is any clinically significant amount of gluten in the end product. A

minuscule amount of wheat was used in a natural flavour that was a

minuscule amount of an oil that was then processed to remove protein,

including gluten. It is then applied to the potatoes.

If they were safe last week, they are safe now; if they are not safe

now, they were not safe last week. All that has changed is what we

know about the process. From this point, based on this information,

each of us has to make a decision. How comfortable are you personally

with eating them (or giving them to your celiac child) given that you

now know that at some point in the process wheat was used, but that

the odds of getting gluten at any more than the molecular level from

the product itself are extremely slim, if not negligible?

The issue of potential cross contamination is another matter, and it's

probably a far greater risk. That's the reason I don't eat anything

at fast food places, including McD's French fries.

We are going to have to make these decsions on a more frequent basis,

because we are now going to have information we didn't have before.

To a certain extent, it confirms the adage that, "Ignorance is bliss."

It presents a huge psychological barrier--especially, I think, to

Honorary Celiac who are making choices for others rather than

themselves. (I don't envy you. It has to be really tough.) We

develop a deep protective aversion to anything that is associated with

that word, and it's sometimes hard for logic to override it. In the

end, though, I think we're better off having as much infomation as we

can so we can make decisions first on a rational basis, then factoring

in the emotional aspect.

Canadian Karen Community Regular

I am familiar with Bobbie and she is a very good voice of reason.

I just can't seem to justify how McDonalds handled this. I for one think they are indeed responsible for the fact that their claim that their fries being gluten free was an "untruth". I don't think they should be able to hide behind the "Well, we didn't know" excuse. If they were going to hang the gluten-free sign on their fries, they should have put the money into the proper testing to make sure.

I think what bothers me more, personally, is how they handled this information. Instead of making some kind of an announcement to say "Okay, here is what happened", they just quietly change their website and hope to sweep it under the carpet? Where is their corporate conscience? Unforgiveable.

Karen

Lisa Mentor
First off, I don't think we're planning a class-action lawsuit, and neither are we are we "counting our money or planning to bankrupt McDonalds". I don't, however, think that it should be O.K. with ANYONE that when you go to a fast food restaurant you're taking a big chance with either your health or the health of your children. I think that McDonalds has vascillated with regard to its ingredients listing on several occasions, and somewhere, somehow -- even if it's through monitoring through the FDA -- they should be held accountable. As far as following the letter of the law -- what about following the spirit of the law as well?

Everything in life isn't as black and white as your posts make them appear. This one is right. That one is wrong. That one is rediculous. These are parents who are very concerned about the health of their children, and rightly so. They are trying to give them as "normal" a childhood as possible under circumstances which are less than optimal. 99.9% of kids go to McDonalds. It's just the way it is. These parents want to make sure that if and when their children get to go, they are medically safe.

Hysteria? You bet. Until you've held a very sick child in your arms in the ER, wondering what to do and feeling absolutely helpless about it , you haven't hit the tip of the iceberg of worry -- under those circumstances, however, it's just controlled hysteria.

Sorry about that last comment, Richard. :(

VydorScope Proficient

In the intreste of being fiar...Lets summarize the facts here...

1) McDonalds has up till 2/3/06 calimed thier fries were GLUTEN FREE, and defined gluten free as "no wheat, barly, rye or oats"

2) McDonalds has NOT change thier fries at all.

3) McDonalds is now required by law to state thier is in fact wheat in thier fries.

4) Phone calls to them reveal that their oil supplier told them that the gluten was removed in the processing and no gluten would make it on to the fries.

5) It is unclear wether this is NEW information to McDonalds, or if they new about the wheat all this time.

Those are the facts as I can gleem from these threads. The way McDonalds has released the information seems a bit sneaky, when they should have made some kind of annoucement. A press release stating the above facts, assuming this is new to them, would have gone a long way to preventing this firestorm of anger. Wether this was a poor judgement call or a out right lie is UNKNOWN.

Now, what does this mean? It means for me tat least to continue to avoid thier fries and recomedn that others do it. I wont hold my breath waiting in them to admit thier mistake or remove the wheat. Everyone will have to decide how to handl this on thier own remember that LACK OF SYMPTONS does not imply LACK OF DAMAGE/GLUTEN.

jkmunchkin Rising Star

First off I want to say, Lovegrov I can not express how sorry I am for your loss. I can't even imagine how painful that must be. I'm sorry if anything any of us said seemed insensitive to your situation.

Secondly, I called McDonald's and spoke with Jim. Pretty much the same answers everyone else has called has gotten. He assured me they are investigating this further and he will be sending me follow up information about this. I told him I am uncertain how to approach their fries now and while I'm sure McDonald's will not miss my occassional $1.60 for fries, however I did want to mention that I work for one of the largest publishing houses in the country and this is not exactly the best publicity. He seemed slightly alarmed at this and asked if this is something I plan on sharing with them. I told him I haven't decided yet. In all honesty, I don't know if any of the publications would do a story on this so I just haven't decided if it's worth going out of my way to talk to people on a few of the books that potentially would.

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      Thanks for sharing that film, @trents.  I am not sure how I missed that film as I see it is a few years old, but it is very good.  I think you should be fine if you take your own packed lunch and eat it from your own lunchbox etc.  Might be worth doing a lunchtime recce to see how cramped the room is before making a decision - for all you know, there may be other people  there who don't eat gluten?
    • cameo674
      The GI doc messaged me this afternoon that she believes that the new blood work added to the old is definitely  looking like a celiac diagnosis is in my future.  She wants to me to call into scheduling each Monday to see if I can get my August 29th appointment moved up due to cancellations.  I have never had a doctor recommend that.  She also said there were additional labs that she requested still out that have not come back yet; so, they may have been missed drawing those since the functional health doctor has a whole slew of labs that I am suppose to be waiting until August 27th to do. I am still waiting to hear on whether or not she will allow me to do pill prep versus the typical gatorade prep that I did 8 years ago for that colonoscopy.  I do not drink gatorade to begin with and that miralax prep kept me in the bathroom up until we drove to the procedure.  My younger brother said the pill form was fairly easy when the liquid form is hard to swallow. Colonoscopy prep is definitely close to number one on the list of things I never want to experience again if I could avoid it.  Number one is a different medication that caused severe cramping that had me in tears until it wore off.  Never having had an endoscopy, I have no idea of what that prep is like, but it cannot be worse right? I started munching on oyster crackers last night.  It is shocking how filling they are.  I just read that I need to pay attention to the protein content of the wheat bread product or I will miss the gluten goal of 10 g per day prior to testing.  The post said that I should look at the protein and multiple that number by .75 if it is a wheat flour product to see how much gluten is in it.  No more oyster crackers for me.  I would have to eat 10 oz bag everyday to meet my goal.  not going to happen.
    • Alibu
      Well, I've made if from the pre-diagnosis forum to here!  I've been diagnosed with "latent" or "potential" celiac and my doctor has suggested me to go gluten-free before my appointment with him in October (first available, LOL).  My ttg-iga was 152, my EMA was positive, I have the gene, but my biopsy was negative (and he took 12 samples), so it makes sense to go gluten free to see if I improve. I know the basics - I can find lists of things to avoid, I know about hidden dangers, etc. all of that.  Where I'm struggling is just STARTING.  I need to go shopping and stock up on some staples.  My goal is to not try to find gluten-free alternatives, but to focus on naturally gluten-free foods like proteins, veggies, fruits, and carbs like potatoes and rice.  However, the rest of the household will not be gluten-free, which is fine, I don't want them to for various reasons.  But I have SO much food in my house in the pantry and fridge and cabinets, and it feels like I need to get rid of a lot in order for me to start fresh, but at the same time, I can't get rid of everything. I guess it's just feeling overwhelming and I've never given up gluten before so this is going to be a huge shift for me and I feel like I need SPACE, but I can't quite have that. Any advice on just getting started and organizing myself would be great!  
    • Scott Adams
      It’s great that you were finally able to see a gastroenterologist—and even luckier to get in the same day as your referral! It sounds like your GI is taking a very thorough approach, which is reassuring given your complex symptoms and history. The confusion around your different tissue transglutaminase (tTG) antibody results is understandable. The variation between your December and June labs may be due to multiple factors, including differences in the lab performing the test (Quest vs. Mayo Clinic), the specific assay used, and the amount of gluten you had been consuming before each test. Antibody levels can drop significantly when gluten is reduced or eliminated from the diet, even partially, which might explain why your recent tTG IgA was now negative and your tTG IgG was borderline high. That’s likely why your GI mentioned it was “usually the reverse”—typically, tTG IgA is more commonly elevated in confirmed celiac, not IgG alone, especially when IgA levels are sufficient, as yours are. Your gene testing confirms that you carry HLA types (DQ2.2 most likely) that are permissive for celiac disease, meaning you can develop it, but not everyone with these genes will. These genes don’t explain why your symptoms are milder or different from others with celiac—many people have so-called "silent" or atypical presentations like yours, with issues like long-term heartburn, loose stools, nutrient intolerances, or just gradually adapting to symptoms over time. It’s not uncommon to assume these symptoms are just aging, medication side effects, or lifestyle-related until someone finally connects the dots. It’s a good thing your daughter advocated for you to be tested—many cases are missed for years because they don’t follow the “textbook” presentation. As for the immunoglobulin tests, your doctor likely ordered those to ensure your immune system is functioning normally, particularly your IgA level, since a deficiency can cause false-negative celiac blood tests. Since your IgA level is normal, your tTG IgA test should be reliable (assuming adequate gluten intake), but again, if you weren't eating enough gluten, that could explain the lower antibody levels now. The comprehensive metabolic panel and negative stool parasite results are additional pieces ruling out other causes of your symptoms, like infections or organ dysfunction. The upcoming endoscopy and colonoscopy should provide more definitive answers, especially with biopsies looking for celiac disease, eosinophilic esophagitis, and microscopic colitis. It’s completely valid to feel unsure about what you’re experiencing, especially when your symptoms have been lifelong or gradually worsening without being severe. You’re not alone—many adults with celiac or gluten-related disorders report subtle or chronic symptoms they’ve normalized. You’re doing the right thing by staying on gluten now through your procedure date in August. Try not to stress about reaching the full 6-slice equivalent each day, but do increase your gluten intake as much as tolerable (e.g., a couple of pieces of bread, pasta, crackers, etc.) to give the biopsy the best chance of detecting any damage. Good luck with your upcoming procedures—you’re closer than ever to answers and a clearer direction forward.
    • Scott Adams
      I don't believe that site is updated regularly, and it may be unreliable.  You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
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