Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Mayo Clinic -- Symptoms


timothymichael

Recommended Posts

celiacshawn Newbie

Hi Tim, well I'm a dude and I am almost positive I have Celiacs. It is interesting, I don't know that the disease is more prevalent in women or if it is just that most guys refuse to go to the doctor or talk about medical problems. After I started having my issues and told friends what I was avoiding and why, it was really interesting to hear the number of guys I knew who actually thought they might have similar problems but just never really pursued it. I sometimes think women in general are much better at putting 2 and 2 together and asking for help when needed, and we as guys have kind of been told our whole lives not to do that.

You know, I have been to I don't know how many doctors, at one point really seeking out being scoped, and the thing is when you are young, in your 20s or 30s, a lot of doctors just won't sign off on doing it. I am not a doctor but having talked to many I think that they generally think that statistically it is just too unlikely for a younger person to have something severe enough to warrant it. Now that being said, if it is something you want done just keep pursuing it, maybe go directly to a GI specialist.

I have been gluten free for over a year now and I feel great. I am able to eat lots of great food that is quite tasty, and I eat out often enough too. A couple of things about your post caught my attention. If you are still eating breakfast sandwiches, lots of food items from regular grocery stores, and drinking beer, you are almost certainly getting glutenized daily. The whole gluten-free thing doesn't work very well unless you are really hard core about it. In my case, how I am able to keep eating good food, and 'bad' food too like TV dinners, hot wings, etc., is I shop a lot at a natural food store that has lots of certified-gluten-free products. If you have a Whole Foods in your area, or a Natural Grocer, or CentralMarket, or any number of other similar type stores start shopping there. When eating out go to places that either have a gluten-free menu or are known to be fairly accommodating to people with gluten allergies, such as Outback. If you have an iPhone there's an app called "Is that Gluten Free? - Eating Out" that is sometimes helpful.

You pretty much have to give up beer. You know my favorite beers are heffeweizens... German wheat beers. How ironic. But it just isn't worth it. There are some gluten-free beers out there but they are hard to find and generally taste like crap. Redbridge is a gluten-free beer made by... Busch I think? It's actually not bad. Since it is made by a major brewer you can usually find it in stores and a lot of restaurants are carrying it now. Liquor can be hit and miss. Generally I stay away from whiskeys/scotch's/etc. because I am not 100% sure that they are not gluten free. I have never had any problems with good clear liquors like Grey Goose vodka, Bacardi rum, etc. Watch out for mixers... sometimes the flavorings can contain gluten. Anything brown/with caramel coloring could contain gluten. That sadly even includes caramel lattes at Starbucks. I ended up buying my own espresso machine and buy the Starbucks espresso pods and make my own lattes now. I was finding that it was just too risky in the store because those guys never clean out the mixer cups thoroughly enough. Last thing you want is to be good and order a really plain drink only to have the last guys drink cross-contaminate yours and end up making you sick.

I would ditch all fast food. Even just a "meat patty" at most of the major burger joints isn't really meat... it's like 50% beef and 50% wheat, soy, and other fillers. Besides if you're running and working out you don't want to be eating fast food. You're 24, time to upgrade your lifestyle anyway. :) Seriously though I have found that the 'fast casual' places like Qdoba generally offer better food and actually have gluten-free options. I haven't found many other safe Mexican restaurants yet... seems like even the corn based products are fried up on a grill right next to or on top of flour products. Ugh. If I eat Mexican I usually get something like pollo verde since it's just chicken and chile sauces and cheese. That has been fairly safe for me in the past. I usually avoid the chips. Margarita mix in my home town is usually gluten-free, but it isn't always a sure thing to be.

Also you know at one point I thought eating Asian food would be a good way to get gluten-free foods, but you have to be careful with that. Almost all soy sauce contains wheat. San-J and the gluten-free version of Kikoman don't, but almost all the others are loaded up with it. So the bad thing is if you get something that isn't breaded and seems healthy at a Chinese place it could still make you sick because most likely it was cooked in wheat-containing soy sauce. Pei Wei and PF Changs have gluten-free menus and gluten-free soy sauce. Japanese food like sushi is usually okay if you avoid soy, but even the vinegar they use could contain malt/barley, but my experience has been that usually it doesn't or it isn't enough to make me react. Vietnamese food is usually pretty safe because it is one of the few Asian varieties that don't tend to use soy sauce. On the flip side, sadly, Italian food is almost never a possibility with me anymore... they use flour in everything. In general I avoid soups too because you never know when a chef has added some flour to thicken a soup up.

After six months of going gluten-free you should be feeling a lot better, so maybe you are still getting too much gluten in your daily diet, or maybe the problem is something else, I don't know. Definitely keep after it. What you said about your family is similar to my situation... I have a great aunt who had colon cancer in her 50s. After talking about all of my Celiac issues, I come to find out that half my family hasn't eaten any kind of bread since they were in their 20s because it always makes them sick. How did that never come up before?? We all kind of talked about it and started to wonder if that wasn't the cause of all the older folks' in my families digestive issues, and if left untreated for decades if that wasn't maybe the cause of my great aunt's cancer. So keep pursuing it. Also you know there are lots of drugs out there that treat reflux, I had it a while before I figured out the gluten thing and was taking Nexium... it helped that particular problem quite a bit. But going gluten-free seemed to resolve all my issues entirely. You know something you said about all food making you sick reminded me of what they say about IBS, which is basically that. The bad thing about IBS is that you have to be tested for basically everything, and once they eliminate everything doctors throw their hands up and say 'must be IBS.'

Try going really, really gluten free for a month or two and see how you feel. Like seriously do not eat anything unless you make it yourself and know what you are adding into your food, or just eat prepackaged things from a natural food store that is labeled gluten-free. That is eventually what I had to do. When it really worked I knew that had to be it. I've backed off from being that hard core now, but it was useful doing that at first just to really get a good handle on the 'control environment' if you will.

I hear you about the boring food thing though. But keep looking into your options and reading up on it and actually once you start knowing exactly what to look for it suddenly gets a whole lot better.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



psawyer Proficient
Anything brown/with caramel coloring could contain gluten.

Caramel color is gluten-free.

I would ditch all fast food. Even just a "meat patty" at most of the major burger joints isn't really meat... it's like 50% beef and 50% wheat, soy, and other fillers.

I don't know where you got this idea. Once upon a time it may have had an element of truth, but today beef patties at fast food establishments are 100% beef. McDonalds led the way decades ago ("two all-beef patties"), and I don't know of any chain that doesn't follow today. If you know of one that isn't pure beef, please name it and provide the source of your information about them.

pricklypear1971 Community Regular

Timothy, you may also consider salicylate sensitivity. It's very common and almost every "spice" is high in sal.

If you toss in any type of gluten prob with sals you can have a mess. Especially with yeast. Ouch.

celiacshawn Newbie

Caramel color is gluten-free.

I probably was not as focused in my statement as I should have been. We were discussing Starbucks and their caramel syrup. If you take a look at the bottles the next time you are in their store you will see that they use Torani caramel syrup. Torani's website says that their caramel syrup contains gluten. It may or may not have to do with the color, but it does contain gluten. My experience has been that often times caramel and gluten go hand in hand, although that might not be a direct result of the color itself.

Confirmation here:

Open Original Shared Link

There is an interesting discussion on this website about 'gluten free' not necessarily being the same thing as 'does not contain gluten.' It will be nice when the day comes that the FDA decides to regulate what the words 'gluten free' mean right down to the parts per billion:

Gluten Free Club - Article

I don't know where you got this idea. Once upon a time it may have had an element of truth, but today beef patties at fast food establishments are 100% beef. McDonalds led the way decades ago ("two all-beef patties"), and I don't know of any chain that doesn't follow today. If you know of one that isn't pure beef, please name it and provide the source of your information about them.

Well, when I ask is it really 100% beef what I mean is, is it entirely beef or does it contain gluten in some form, which is probably not the same way in which you are looking at the 100% beef statement. I mean that is really the point of this whole forum right... are we going to have a reaction.

I am not 100% sure what to believe, but I will explain my logic of how I got to this point.

I checked McDonald's corporate website and they say their beef patties are 100% beef, and there is no "contains" line next to that (other items like their buns have a "Contains: Wheat" line). But on the flip side of this as of January 2011, Livestrong.com was reporting that their beef patties contained soy and the seasonings used on the patty may contain wheat. My iPhone app "Is that Gluten Free? - Eating Out" has information on several restaurants but for McDonald's it says "Unverifiable." It then lists a letter of disclaimer received from McDonald's Corporation that basically says that they provide ingredient lists, they do not provide allergen lists. So that is basically CYA legalese if you ask me. I agree that there is a lot of confusion out there with fast food restaurants, but a lot of that is caused by them. I guess my viewpoint is that if a company is not willing to stand by a clear, direct statement that their product is gluten free then I don't consider it gluten free. Personally I've gotten sick too many times from restaurants that on first blush appeared to be claiming an item had a gluten-free status, when in reality they did not know that for sure and there was at least some degree of risk that it might. The last time I ate at McDonald's I got sick and so I have avoided the place, but it could have just been the food itself (I am just not a fan of fast food). If you have had more luck with them that's great to hear, maybe I am too cautious in this respect.

ravenwoodglass Mentor

Well, when I ask is it really 100% beef what I mean is, is it entirely beef or does it contain gluten in some form, which is probably not the same way in which you are looking at the 100% beef statement. I mean that is really the point of this whole forum right... are we going to have a reaction.

A very long time ago, and I mean many decades, the US formed regulations that when a meat item had any 'fillers' of any kind they had to be declared. That would include stuff like wheat or soy etc. Companies did it for the same reason bread crumbs were added to meat loaf, to stretch the meat. If the company says something is '100% beef' that is what it is. The government would shut them down otherwise.

However seasonings and the cooking methods are a different matter. While the beef may be all beef the seasonings can have other items in them for flavoring. We know the amount of care we need to take in our own kitchens to prevent CC and most fast food and some regular restaurants just don't have the ability to keep that CC from happening. Frys that would be safe if cooked by themselves in a fryer become CC'd when battered onion rings or chicken etc are cooked in the same oil. The person who puts the buns down will not be changing gloves before they add other toppings and wrapping that bun covered burger before they set your plain burger down on that piece of paper and wrap it etc.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,390
    • Most Online (within 30 mins)
      7,748

    Ozz lock
    Newest Member
    Ozz lock
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.9k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      If you have been eating the gluten equivalent of 4-6 slices of wheat bread daily for say, 4 weeks, I think a repeat blood test would be valid.
    • englishbunny
      it did include Total Immunoglobin A which was 135, and said to be in normal range. when i did the blood test in January I would say I was on a "light' gluten diet, but def not gluten free.  I didn't have any clue about the celiac thing then.  Since then I have been eating a tonne of gluten for the purpose of the endoscopy....so I'm debating just getting my blood test redone right away to see if it has changed so I'm not waiting another month...
    • trents
      Welcome to the forum, @englishbunny! Did your celiac panel include a test for "Total IGA"? That is a test for IGA deficiency. If you are IGA deficient, other IGA test resultls will likely be falsely low. Were you by any chance already practicing a reduced gluten free diet when the blood draw was done?
    • englishbunny
      I'm upset & confused and really need help finding a new gastro who specializes in celiac in California.  Also will welcome any insights on my results. I tested with an isolated positive for deamidated IGA a few months ago (it was 124.3, all other values on celiac panel <1.0), I also have low ferritin and Hashimotos. Mild gastro symptoms which don't seem to get significantly worse with gluten but I can't really tell... my main issues being extreme fatigue and joint pain. The celiac panel was done by my endocrinologist to try and get to the bottom of my fatigue and I was shocked to have a positive result. Just got negative biposy result from endoscopy. Doctor only took two biopsies from small intestine (from an area that appeared red), and both are normal. Problem is his Physician's Assistant can't give me an answer whether I have celiac or not, or what possible reason I might have for having positive antibodies if I don't have it. She wants me to retest bloods in a month and says in the meantime to either "eat gluten or not, it's up to you, but your bloodwork won't be accurate if you don't" I asked if it could be I have early stage celiac so the damage is patchy and missed by only having two samples taken, and she said doctor would've seen damaged areas when performing endoscopy (?) and that it's a good sign if my whole intestine isn't damaged all over, so even if there is spotty damage I am fine.  This doesn't exactly seem satisfactory, and seems to be contrary to so much of the reading and research I have done. I haven't seen the doctor except at my endoscopy, and he was pretty arrogant and didn't take much time to talk. I can't see him or even talk to him for another month. I'm really confused about what I should do. I don't want to just "wait and see" if I have celiac and do real damage in the meantime. Because I know celiac is more that just 'not eating bread' and if I am going to make such a huge lifestyle adjustment I need an actual diagnosis. So in summary I want to find another doctor in CA, preferably Los Angeles but I don't care at this stage if they can do telehealth! I just need some real answers from someone who doesn't talk in riddles. So recommendations would be highly welcomed. I have Blue Shield CA insurance, loads of gastros in LA don’t take insurance at all 😣
    • trents
      Okay, Lori, we can agree on the term "gluten-like". My concern here is that you and other celiacs who do experience celiac reactions to other grains besides wheat, barley and rye are trying to make this normative for the whole celiac community when it isn't. And using the term "gluten" to refer to these other grain proteins is going to be confusing to new celiacs trying to figure out what grains they actually do need to avoid and which they don't. Your experience is not normative so please don't proselytize as if it were.
×
×
  • Create New...