LovintheGFlife

Welcome to the forum, @LovintheGFlife!

Thank you @trents. Please see my responses below.

1. Are you consistent with eating gluten free?

Yes, very consistent. I occasionally eat out but only at places that have a gluten-free menu. And I take Gliadin-X when eating out

2. Since being diagnosed with celiac disease, have you had any follow-up testing (blood antibody or biopsy) to check for the status in healing of the small bowel villous lining?

Yes, the antibody titer results kept falling and are now back in the normal range.

3. Are you still consuming dairy products?

Yes, I cannot resist butter/cheese products, yogurt and ice cream!

4. What meds are you taking?

None, other than multivitamins and Vitamin D.

https://www.medicalnewstoday.com/articles/323147#stool-colors

Thanks for sharing this article. It is very helpful.

For many years the Bilirubin results in my annual blood work have been borderline or slightly high. They are typically in the range 1.2-1.7 mg/dL. Every time I discussed this with my physician, he claims it is "normal" for some individuals and attributed it to Gilbert's Syndrome, a benign condition. I was diagnosed with celiac disease (celiac disease) three years ago. I don't wish to share TMI or sound gross but another interesting point to note: my poop has been yellow or orange colored for many years, even before my diagnosis. It is seldom brown in color, unlike my other family members. I wonder if this could be related to celiac disease. Interested in hearing about the experiences of other members. Thank you.

I recently started shopping at a nearby Trader Joe's store. I was surprised at the number and variety of (healthy) gluten-free options sold there. I must admit their low prices are also quite tempting. However, I am curious as to the labeling on all their packages. While none of their products are certified as gluten-free, many are identified as 'GLUTEN FREE' on the packaging. Are these items safe for celiacs? Has anyone tried Trader Joe's products and have there been any adverse reactions?

I recently had to travel to India for work, my first trip outside North America since my diagnosis three years ago. I stayed at the JW Marriott in Delhi and the Marriott Hotel in Indore (Central India). Initially, I was apprehensive regarding the availability of gluten-free (gluten-free) meals, not knowing what would be in store for me on this 10-day trip. To be frank, I was quite impressed with the level of awareness and knowledge among kitchen staff in these hotels. Upon explaining my condition to servers, I was greeted by restaurant managers and chefs who walked me through the options and described in detail the ingredients in their offerings. At every meal, they even offered to cook special gluten-free meals (outside of the buffet) with extra precautions taken to avoid cross-contamination. The diverse variety of foods and delicious options presented never failed to impress me. They even had gluten-free breads, naan, rotis, Western cakes, pastries and cookies at the buffet stored in covered trays with dedicated utensils. I had no clue that baked good made with millet or rice flour would be so delicious! With the wide variety of lentils and pulses available, one cannot go wrong. Thankfully, I did not experience any reaction during the entire 10-day trip. Suffice it to say that I have not experienced such hospitality, concern, and attention to detail on my travels in North America, where I have experienced mild to severe reaction to gluten several times after eating out.

Important to note: The awareness of gluten sensitivity and celiac disease does not exist among the general public on the streets in India. I am told that eating in any ordinary restaurant or hotel that is not a member of a multinational Western-owned chain (e.g. Hilton, Marriott, Hyatt, Radisson) may not be safe for celiacs. However, I had a great experience on the last trip and would certainly return to these hotels in a heartbeat.

40 minutes ago, I.M.Celiac said:

Here's a cheat sheet for Celiac Travels in America:

Sad vending machines in waiting rooms:

-nuts (Not trail mix)

-Skittles

-Some potato chips (only if you know they are gluten-free because you've had them previously.)

-Mounds or Almond Joy

These items are super junk food but will help in an emergency. 

 

Airplanes:

-Flying from home? Bring toasted gluten-free bread with some kind of homemade sandwich filling. (gluten-free ham/swiss, roasted veggie w/goat cheese etc.) Put sandwich together at your seat with sad plastic knife. It will be safer than anything gluten-free an airline offers. (Too risky and you will have food if your plane is delayed for 5 hours. Gluten eaters won't!) 

-Also pack 6-8 Kind bars, purchase 3 Chobani yogurts with a spoon from overpriced airport deli. Also bring small bags of nuts in plastic bags from home for flight or breakfast when you land. Stick them in the hotel fridge as back-up.

-Pick hotel near a grocery. Swing by for supplies like more little yogurts/snacks/cider. Make it a game to spot regional gluten-free items and try them. (Read every label though!) 

-Heads up on any hotel shampoos or soaps. Bring your own even thought the packaging is so cute. 

-Carry a good-sized snack at ALL times. Office pizza parties are depressing but especially when the boss, "We ordered Gluten-free pizza for you." Ugh. Do not eat it. The cross-contamination will get you. Your snack will save you. Also works for funerals and baby showers. 

-Drink different regional ciders at bars with co-workers. Some ciders are ok. Drink non-alcoholic Kombucha if you are driving. Kinda "beer-esque".

-Before trip, google restaurants with gluten-free menus. Aim for Middle Eastern, Greek, French, Italian bistros. Casually mention to co-workers you would like to check so-and-so restaurant out. Chains are not great but I went to a Virginia Cheesecake Factory and they had ok options. Sweetgreens in NYC has also been ok.

-Flight back? Restock Kind bars, maybe part of plain rotisserie chicken from grocery? Maybe a tiny hot sauce would get through security? Watch out for airport people thinking vegan is gluten-free. Yikes, it is not. 

@philhatesgluten is on Instagram and TikTok. He has a great account about being gluten-free (And dairy-free!) and his restaurant recs. 

For international travel, I've only done Europe and the same rules apply above. Iceland was gluten-free friendly too.

Good luck! This routine is from years of trial and error.

Each year more and more options are out there!

It will get better and you will probably feel SO much better when you heal. 

 

 

 

@I.M.Celiac these are very helpful tips for a traveler; thank you! I have tried most of these and KIND bars have always been my go-to snack. I would also like to add two other restaurant chains where I have had safe dining experiences: Yard House and Outback Steakhouse. IMO, these two take gluten-free meals and Celiac Disease very seriously.

4 hours ago, Magdalen said:

I have to Strongly disagree about the buffet; buffets are a cross-contamination nightmare. Serving utensils get swapped from one dish to another, and bits of food from one dish can easily get dropped into adjacent dishes.
NEVER eat at a buffet unless you’re the one hosting, or help set up, and can put food aside from the buffet before other people serve themselves.  

@Magdalen, I generally avoid buffets in restaurants, especially if there is any bakery item around. The only items I am comfortable consuming at a breakfast buffet are hard boiled eggs, fruit and yogurt.

18 hours ago, Ivana said:

I eat toblerone regularly. It seems to be on the OK list for celiacs in my country and I have the impression that we all eat it here. I don't know if anyone contacted the company or if they just assume it's ok because of the list of ingredients that doesn't list gluten, not even as "possible traces". I also eat other such snacks. Of course, it's best not to overdo with such processed food. 

There is also this statement>

https://toblerone.fr/pages/faq

@Ivana, thank you. This link is very helpful. 

50 minutes ago, Scott Adams said:

I sometimes eat it and have had no reaction. Of course this does not guarantee that it is 100% gluten-free, or that a small batch could be contaminated.

Unfortunately their web site give no additional info (https://www.mondelezinternational.com/Our-Brands/Toblerone), however, in the USA, known allergens, including wheat must legally be disclosed on the ingredient label.

@Scott Adams, thank you for the reply. I too checked their website, but not much about allergens or gluten can be found. Since Toblerone is one of my weaknesses, I have occasionally eaten a few triangles with no reaction whatsoever. However, I have always consumed them with a capsule of GliadinX, just to be safe.

Toblerone used to be my favorite and go-to chocolate until I was diagnosed with celiac disease. I notice the ingredients listed are milk, almonds, soy and eggs. It is NOT labeled gluten-free. I was wondering if any celiacs have tried Toblerone and had a reaction? Thank you. 

20 minutes ago, Scott Adams said:

Maybe they just removed the croutons...wouldn't be the first time!

@Scott Adams, that's exactly what I thought at the time. I should have hung around the kitchen...but am much the wiser now.

3 hours ago, trents said:

We're the croutons not visible? Trying to understand why you ate the tomato bisque.

@trentsI did NOT eat the tomato bisque after noticing the croutons. I asked the server to return it to the kitchen, had a word with the chef, and was offered an apology and a replacement without croutons. However, I suspect that even this too was contaminated.

2 hours ago, Yvonne Casey said:

I was diagnosed with Celiacs a year ago this August.  I was so sick for years of not being diagnosed or being misdiagnosed…so of course I’ve done everything that I need to do to stay gluten-free.  For months we have not gone out to eat…I stay home and make my own meals (have gotten many great recipes from “Iowa Girl Eats”).  But recently I’ve eaten out at two different places and got sick…one was at a nice steak restaurant and when I talk to our waitress I should have known by her look and response (“ok, tell me again what that is”…Celiac’s)…and then a few minutes later she came back and asked if I could have bread!!!!   I should have stopped there…lesson learned….if a manager or the chef do not come to your table to discuss options…don’t eat there.  Second restaurant…a well known deli…I spoke to the manager who assured me that gloves would be changed, different surfaces for preparation; and different toaster…would be used.  I watched and sure enough they did what she said…except…I forgot and they did not take into account that the condiments that they use on regular bread are also used on gluten-free bread….contamination at its best!!!  Got sick both times…so my record of safe restaurants for Celiacs is not so good.    My daughter who is a germaphobe reminded me that you have to do a mental trace of the (like germs) possible contamination. 

@Yvonne Casey, Sorry to hear about your experience. I have been eating out quite often these last few months and except for one occasion have not suffered any serious symptoms. On that occasion I was terribly disappointed because the restaurant (a famous national chain) claimed to have a gluten-free menu but served me tomato bisque from that menu with croutons. Can you believe that?? All this after I explained clearly to the server about celiac and gluten. Obviously, none of it mattered to her. Needless to say, I will not be visiting that restaurant again.

I must emphasize though, that a gluten-digesting supplement (Gliadin-X) is consumed every time I eat out. I'm not sure if Gliadin helps, or if the meals I consumed have truly been gluten-free. As you well know, caution and clear communication when eating out, are key.

23 hours ago, Wheatwacked said:

Try Canyon Bakehouse Gluten Free Heritage Style Honey White. It's not Wonder Bread but pretty good. Good taste and mouth feel. Keep it frozen. Nuke the frozen slices for a minute and let cool. It makes a nice sandwich. If you are Celiac there is a 44% chance that so is your little one but the symptoms are not recognized or passed off as normal.

@Wheatwacked that's a great suggestion. I have tried several gluten-free bread and bakery items from different manufacturers and can affirm that Canyon Bakehouse tastes the best. It's not exactly your regular wheat bread, but comes pretty close! Highly recommend this brand.

1 hour ago, Scott Adams said:

Any time you eat out there is a risk of cross-contamination. I still eat out, but always discuss my order with the server, and sometimes the chef, beforehand. I also take AN-PEP based enzymes (an advertiser here) that may help mitigate small amounts of contamination. I used to have issues from time to time when I ate out, but for the past few years I haven't. I have not tried the Yard House restaurant, so I can't comment specifically about it.

@Scott Adams, I agree on the risk of cross-contamination. I am usually comfortable eating out if the restaurant has a dedicated fryer and/or a dedicated gluten-free cooking space in their kitchen. However, such places are really hard to come by. Therefore, like you, I generally talk to my server or the manager, if possible.

I recently came across a highly varied, inclusive, and tempting gluten-free menu at my local Yard House restaurant. I am interested in feedback from members who may have tried this menu. Eager to hear comments about safety, reactions, and the food in general. Please respond. Thank you.

On 1/7/2022 at 11:56 PM, knitty kitty said:

You may want to avoid those protein drinks that include dairy products.  Some Celiacs have problems with dairy.

 

@knitty kittyI have been using them occasionally for the last few months. I noticed that every time I drink them I have slight bloating and gas for the rest of that day. On days that I avoid them, there is no flatulence. Other than these drinks I do not consume any dairy products. So, I think it's obvious the milk in these drinks may be the cause of the unwelcome symptoms.

Is it advisable, recommended, or even safe for celiacs to consume protein enriched drinks and powders such as 'Ensure', 'Boost', etc.? Most of these drinks are labeled "Gluten Free".

On 9/3/2021 at 3:39 PM, Oldturdle said:

Does anyone eat products that say, "may contain traces of wheat," under the ingredient list?  How about, "manufactured in a plant that also manufactures products containing wheat?"  Are these different?  I have eaten both on rare occaisions, with seemingly no I'll effects, but wonder if I am playing with fire.

@Oldturdleto be honest, I have recently started eating chocolates and truffles that are labeled "may contain traces of wheat," or "manufactured in a plant that also manufactures products containing wheat". However, I must emphasize that a Gliadin-X capsule is also ingested when indulging in such products. I have yet to experience any adverse reaction so far. I believe, the amount of gluten contaminant, if at all present on a piece of candy, is negligible (<20 ppm); or, Gliadin-X is effective in combating any traces of cross-contamination.

15 hours ago, Oldturdle said:

Isn't that the truth, about the grocery bill!  Cooking from scratch is a good option, but not always how we want to spend our time.  I too take Gliadinx, but usually only when eating in restaurants, or at friend's homes.  I told my gastroenterologist that I take Gliadinx. He had never heard of it, so I explained it was an enzyme that broke down gluten in the stomach.  He still had not heard of this concept.  He said, "They probably won't hurt you.  Take them if they are cheap.  Don't take them if they are expensive."  

@Oldturdlethat sounds like my GE too. I have been using Gliadin X when eating out (gluten-free meals of course!) and have found it to be very beneficial. Either the Gliadin is working, or the meals I have eaten out are truly gluten-free, as claimed!

On 11/17/2021 at 10:12 PM, SammieBoo said:

Hello Everyone! 
 

Over the last year I’ve noticed that my body has become a lot more sensitive to daily life, my stress levels were high, I had an increase in migraines, stomach pain, random vomiting and all sorts of bowel movement issues. I thought this was simply due to a change in my lifestyle and surroundings. I had moved that year to a new town and wasn’t coping well with the change. I was also seeing my doctor regularly in an attempt to figure out issues I’d had with PCOS and absent periods for my entire pubescent life. I’m also obese and struggling to lose weight, always have, so again, I figured my list of symptoms was surely do to a rapid amount of changes I was undergoing… and didn’t think much of it. 
 

about 2 months ago however, I started to experience more intense symptoms… extreme nausea that was constant… nothing I would take could help to calm it, I wouldn’t have a bowel movement for 3 days or more, then intense diarrhea. Whenever I wasn’t feeling sick I’d crave chocolate and strange foods…I did so much research and narrowed my symptoms down to 2 potential issues - Cancer, or Celiac.  I finally couldn’t take it and told my doctor who promptly sent me for blood work and abdominal X-Rays… part of me thought for sure the answer wouldn’t be that easy, but turns out a week later I get a call from my doctor informing me that both tests they did came back “very positive” for potential celiac. 
 

I had no idea… but when I think about the health concerns I’ve struggled with from childhood until now (I’m 30) I’m baffled that every symptom or ailment I’ve struggled with leads me right to Celiac. 
 

What I found strange though, is how I had no idea… the more research I’m doing, the more I realize how common it is for so many celiac patients are considered “Silent celiac” and go undiagnosed their entire lives. My mother actually died of Colon cancer 20 years ago, at age 37… almost unheard of at that age to die from such a cancer. She too struggled with many of these symptoms in life… I wouldn’t be surprised if celiac caused her cancer, and a lack of medical understanding caused her premature death. I’m so surprised… and heart broken. But also so grateful my case was caught early enough to potentially save my life. 
 

I go for a biopsy in a month to confirm my diagnosis… I’m counting down the days and minuets and can’t tell you how excited I have to gut gluten out of my life for GOOD. 

 

Any and all support and encouragement is welcome. Share your story… this is new and overwhelming for me.  

HI @SammieBoo,

Welcome to this forum. I hope your symptoms improve and you find relief soon. I struggled like you for many years with indigestion, bloating, cramps, and constipation. All that improved two months after switching to a gluten-free diet. I am sure your outcome will be similar, if you are confirmed to celiac disease. It's a shame that many physicians are ignorant about this condition. My PCP even told me he's "not convinced" celiac disease is "even a thing". So much for modern medical science!

On 10/12/2021 at 11:48 PM, docaz said:

Hi,

At least he was honest. So many physicians have never read an article about enzymatic degradation of gluten and discount it out of ignorance combined with laziness to actually read the papers. Recently, almost every month, a new encouraging publication from various international medical centers is written about this topic. Most of them are literature reviews but each and every single one of them consider enzymatic degradation a promising adjunct to gluten-free diet. Here is just a recent one that is written by a group of scientists in Russia and the US (The title mentions sensitivity but the paper itself discusses celiac disease).  https://www.mdpi.com/1999-4923/13/10/1603/htm 

@docaz Great article; thank you for sharing!

I have a follow-up question though: when eating a gluten-free meal in a non-dedicated restaurant, what's the best time to take Gliadin-X? Should I pop the capsule(s) before, after, or during the meal to mitigate any risk of cross-contamination? Advice from users is appreciated. Thank you!

Here's an update: I visited my GE today and asked him about Gliadin X. He claimed to have never heard of it. However, he advised me to go ahead and give it a try, adding: "if a medication or supplement does not harm you, it can't hurt to try". So, I just ordered my first supply (90 capsules) of Gliadin X on Amazon. Watch this space-will let you know how it works!

9 hours ago, fllstuart77 said:

do you really trust those gluten free bakeries.. ?

I ate at one down here and always got  diarrhea after...

They have a nice one in Naples Florida called Epiphany Gluten Free Baker....

I was actually thinking of moving there before just to be minutes away from a dedicated gluten free place...    plus the town and its location is beautiful paradise..

@fllstuart77, I really don't know whom to trust. We just have to take their word for it (that they are indeed gluten-free!). The only other option is to avoid eating out altogether! I have eaten some of Mariposa's bakery items and have suffered no issues whatsoever. So, I would certainly recommend them. That being said, every individual's digestive system and immune reaction will be different.

4 hours ago, Helen Vajk said:

Just hosted our 50th anniversary cruise with Hornblower on San Francisco Bay. Salad (no rolls) and both entrees, chicken & veg, were completely gluten-free.  They couldn't do a gluten-free dessert (NY cheesecake) but I brought 6 gluten-free cupcakes from a local completely gluten-free cafe.   The food service expressed concern about cross-contamination, not likely from cheesecake, and answered all my questions.  All 6 celiacs (yes, 4 related to me) did fine.  Tipped them well.   Same message - pre-meal contact is worth the effort.  

@Helen Vajk, interesting you mentioned San Francisco. I was vacationing there earlier this month and discovered an awesome bakery located inside the Ferry Building, called "Mariposa". The items on sale were so delightful. I tried the bagels, scones and muffins. All were amazing, although a little high-priced. But for a gluten-free visitor with a terrible sweet tooth, they were irresistible. 😋