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

Is It Just Me? But Some Of This Stuff Seems A Bit Overkill.


jacklyn1981

Recommended Posts

Guest nini

my daughter and I had both been dx'ed with GERD... going gluten-free, definitely helped... I didn't need my meds after about 6 months...

if you haven't already e-mailed me for the newbie survival kit, feel free to do so, just e-mail me at nisla@comcast.net and in the subject put "request newbie survival kit" I'll e-mail it to you just as soon as possible

is it overkill to buy new toasters and such? I didn't think so at first, but the longer I was gluten-free, the stronger the reactions got to accidental cc... my husband eats gluten so I have to be extra careful and follow around after him. He bought himself a new toaster for Father's Day so now I have to thoroughly clean out the toaster oven so that I don't have to keep putting foil down when I make toast for my daughter or me. I didn't realize until recently that I was getting sick from the plastic collander that I used to drain pasta, my hubby was also using it to drain his mac and cheese and you really can't get all the gluten out of those little holes.

yes it's that important. it may seem silly at first but eventually you'll get it! I say ease yourself into it... there is a major learning curve to this lifestyle (and it is an entire lifestyle change)

I'm in the south... Marietta, GA to be exact, and I totally feel ya on biscuits and gravy... my biggest frustration is Krispy Kreme donuts... the fact that I will never have another one is very upsetting to me.

welcome to the board... oh and as far as a dietician is concerned... unless they are certified with the one and only organization that certifies gluten free dietary consultants (I can't remember the name) then don't bother. You can learn more on this board and from reading books than a dietician can teach you.


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



Celiac.com Sponsor (A8-M):



TCA Contributor

Kraft will always list gluten in the form of Wheat, Rye, Barley, or Oats in their ingredient lists. I buy thier Light Ranch. Hidden Valley is NOT gluten-free!

What grocery store do you use? We might could help point out some items for you.

mouse Enthusiast

I don't know if Gerd and Reflux are the same, but I had refluz so bad that I had to take meds in the AM and PM. For me, it completely went away, after I went gluten-free. I also used to be on a large basketful of meds and I do mean large. I hated to go on trips, as it took me almost an hour to divide them into hours and the days I would be gone. I am now down to a handful of meds. I may sound strong as many of the older and later diagnosed celiacs are on this forum. But I have to tell you that there are times that I tell my husband "why did you beg me to fight". He always gives me a loving answer. There are times that I really wished I had not fought so hard to live. But, thank God, those moments are not often. :ph34r:

jacklyn1981 Newbie

Nini i have already emailed you and i must know how you lost 105 pounds!!!!!!

Guest nini
Nini i have already emailed you and i must know how you lost 105 pounds!!!!!!

in a nutshell, by sticking with foods that are naturally gluten-free, like fresh fruits and veggies, plain baked lean meats, moderate amounts of starches like rice and potatoes and allowing myself treats when I felt deprived... Just in small quantities... I have learned how to make a chocolate bar last for several weeks! I started serving my meals in smaller portions on smaller plates and not allowing seconds... I allowed myself one cup of coffee every morning (real cream real sugar...) eliminated added salt from my food, drink mostly water, juice maybe once a week, regular sodas (no diet) once or twice a month, real butter not margarine, just small quantities, real cheeses, not imitation, and I limit my intake of gluten-free substitute products. I allow myself to have them as a treat, but they are not the staple of my diet. Feel free to ask any questions that you may have about this. I believe in moderation and eating healthy naturally gluten-free foods.

Guest Robbin
I don't know if Gerd and Reflux are the same, but I had refluz so bad that I had to take meds in the AM and PM. For me, it completely went away, after I went gluten-free. I also used to be on a large basketful of meds and I do mean large. I hated to go on trips, as it took me almost an hour to divide them into hours and the days I would be gone. I am now down to a handful of meds. I may sound strong as many of the older and later diagnosed celiacs are on this forum. But I have to tell you that there are times that I tell my husband "why did you beg me to fight". He always gives me a loving answer. There are times that I really wished I had not fought so hard to live. But, thank God, those moments are not often. :ph34r:

Arnetta, we are all glad YOU DID FIGHT AND CONTINUE TO !! :) Life is a constant fight one way or another for all of us, unfortunately yours has been a brawl. I always say that the worse it is for us here on earth, the better it will be for us in Heaven :)

Welcome jacklyn and other newbies! I don't remember which post, but you can have spaghetti!! Rice pasta is really good and tastes like regular. I thought the whole toaster, cookware, shampoo, etc. changes were overkill too, until I was gluten-free for a couple of months and then got knocked on my butt with a bad glutening. The weird skin rashes, sore throats, canker sores and scalp sores were from gluten. It truly does involve a withdrawal phase and you may feel worse for awhile, but I agree with arnetta, thank God you are dx at a young age and will not go through what some of the people on here have had to go through. Take care and keep us posted.

gfp Enthusiast
They may become stronger....this does happen to alot of people. Its mainly because your body has been dealing with the gluten for a long time...its always in a reactive state and so your body has adapted to this. Once you eliminate what is essentially "poison" to your body....reintroducing it can cause noticeable reactions which can seem more dramatic than what you experienced previously. Its your body telling you that it does not like gluten.

Yes its no different to say a smoker who smokes 40 a day. If someone who doesn't smoke tries to smoke 40 they would be violently sick ... meanwhile that person is suffering general poorer health than they would otherwise but they don't really realise it unless they quit.

Gluten is the same, if you keep imbibing it then you will continue to be sick albeit on an even keel ... you don't have D 24x7 ... its just bouts here and there etc. but the damage continues to happen, just like smoking.

When you go gluten-free your general health improves although it can take a while and it can be slow, it depends on the person and generally age and other factors.

Also gluten reaction isn't constant ... it seems to vary in length and how violent it is ...

Generally when we are gluten-free we notice the reaction much more... but I think mainly because we are starting from a better place to start off. The amount of gluten doesn't seem to make much if any difference to me be it CC or a whole pizza ....


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



Celiac.com Sponsor (A8-M):



Kaycee Collaborator
OK first off don't get offended cause after all I am newly diagnosed and having a hard time dealing with the life change of it all. But all this stuff about cross contaminating ones self by using the same cookware or thru toothpaste....do i really need to worry about this stuff...honestly. I dont know if i am just not as sensitive as others but I dont get violently sick when i eat gluten...i've been eating it all my life...yes i've had stomach problems but the vomiting and hospital stuff never applied to me. I just got my test results back yesterday...biopsy and blood work...i wasnt convinced that i had it till they both came back positive so i havent even started my diet yet....and you all are really freaking me out with this cross contamination stuff. Please advise...

Another question: I have been overweight all my life...not typical of a celiac...anyone else???

I have just come across this thread, and it is already 3 pages long, and I have only read your opener.

Here is my intitial reaction to this thread Jacklyn.

I am newish too. I thought the same too that everyone was going too far. But the further I have gone into this, the more I realise that I am just as sensitive as everyone else seems to be, yet my symptoms were never very serious. I think I probably have a high pain threshhold. After being told my crippling pain was all in my head by a doctor, when I had in fact a cyst on an ovary, and putting up with the pain for 2 years, I think my pain threshold has risen.

I am only learning now how to listen to my body. If my stomach is a bit sore and bloated feeling, I make note of that, and listen to what it is telling me. In the process I am beginning to appreciate other peoples problems, realising that I in the past have not been very tolerant of allergies and intolerances in other people. Sorry.

But now if I eat anything with even the tiniest bit of gluten, I get a crook stomach, not too serious, but it ends up with diahrhea. I am just so blown away with how little I react to. At times I think, no that couldn't have been gluten, but same symptoms. Crampy stomach, followed nearly two days later with diahrhea.

I am not sure about the cross contamination, but I do try to be careful, and will never cook with flour again, have been caught out too often.

I have been overweight too, all my life, my excuse is that I have always been hungry. But now, the hunger is not so obvious.

Cathy

aikiducky Apprentice

What Cathy said about hunger caught my eye... I was always hungry as well! Or, not like starving hungry, but at least peckish... my husband used to joke that I eat all the time, because I was always snacking. Aftre going gluten free, after a while I started to have this wonderful feeling that what I ate really satisfied me and I didn't feel the need to eat all the time anymore. I think what happened is that I started absorbing the nutrients in the food better and my body could finally stop yelling for more food. I was overweight as well and I've been steadily loosing weight after I went gluten free, just because I don't feel like I need to eat all the time anymore.

Nowadays I mostly eat three meals a day, and I don't need anything between. :)

When you don't know what to buy, fresh fruit, vegetables, meat, fish, and rice or potatoes are the safe options. If you start with those, you can at least have something to eat while you figure out more complicated products. :D

Pauliina

debmidge Rising Star

We went to nutritionist when husband was first diagnosed and I expected that this person would have a lot of lists of gluten-free brand foods, etc. All she handed out was the stuff you can get over the internet or from the library. I expected to at least look at a product book like the CSA puts out or internet choices like Clan Thompson or GlutenGuard. I knew just about as much as she did. It was a waste of time and money.

Her information would have been good for someone who was in hospital and SUDDENLY woke up celiac disease and knew nothing about it. Or someone who was incapable of doing any research themselves. But she should have taken it to the next level --

She had Shelley Case's book and showed it to me; but I knew about the book and needed in depth information about stuff like Clan Thompson or the CSA product book. At that point I didn't know that stuff existed.

To my husband, gluten is a poison and he if doesn't take it seriously, how can he expect others who are not celiac to take it seriously. He stays 100% gluten free as he never wants to go backward to how he used to be. The neurological damage alone from celiac disease is scary enough.

jacklyn1981 Newbie

Since everyone has been so nice and helpful responding to my thread i want to say thank you. I am much more educated now and will definitly take it seriously...i see now that it is not "overkill". I have never met so many people who are eager to help strangers along. Today is day 1 of my gluten free lifestyle...and with your help i am prepared.

THANKS!

ArtGirl Enthusiast

Jackyln,

I had been wondering the same thing as you, so this has been a very informative thread for me, as well.

I THOUGHT I'd been gluten-free for at least a couple weeks but the D has continued to be a low-level problem. But now find that I haven't been completely gluten-free - took a look at some items in the bathroom and, for pete's sake, the hand-lotion and shampoo had wheat/oats writting right there in the ingredient list. And, I'd been using an oatmeal hand soap for garden-dirty hands (duh!!!).

So, for me, too, today is my (third) first day of being gluten-free.

Hope all goes well with you. This gluten-free living is a real adventure, to say the least. Isn't this forum a great tool!

Take good care of yourself!

DingoGirl Enthusiast
Is it worth paying $80 an hour to a dietitian who specializes in celiac...or should i be able to teach myself all i need to know?

welcome.....if you study this board and get a couple of good books, you really won't need a dietician, in my opinion. "Dangerous Grains" is a good one. I haven't even read it :blink: because for the first month or two after diagnosis I read this board and other sites about two to three hours a day, printed things out (products, foods, etc.) and just acquired as much knowledge as I could. I, too, felt that it seemed so extreme, and it kind of is.....I echo what everyone else says here - my reaction to accidental glutening, which has happened only about 4 times in five months - is violent and happens about 12 hours later.

FYI - I live alone and did NOT replace any cookware, toaster, etc. - - just scrubbed it carefully - but those things never have gluten-y items in them any more, so I'm not re-contaminating. I still use shampoo occasionally (and conditioner) with wheat and don't have any problems. It's the lipstick and lotions, makeup, vitamins, stuff like that you have to watch.

Is there a Trader Joe's anywhere reasonably close to you? That saved my life.

Good luck and welcome.

Fiddle-Faddle Community Regular

CONGRATULATIONS, JACKLYN!!!!!!! 1ST DAY gluten-free--WOO-HOOO!!!!! :):):):):D

loraleena Contributor

Hi and welcome.

Since you have had lots of replies I am just going to let you know what gluten free toiletries I use and like. I use Tom's of Maine toothpaste, Giovanni or Shakai hair products, and Burt's Bee's lipstick. The first and last can usually be bought at drugstores, and the hair stuff you can find at natural food stores. Whole Foods is great for gluten free products. Hopefully you have something within driving distance of your small town. Good luck with your new life! Oh yea, and it may take a while for you to feel better. There can be many ups and downs as your body heals. You may even have a little withdrawal in the beginning.

luvs2eat Collaborator

I was like you... my reactions after eating gluten weren't severe. After I'd been gluten-free for a year, I melted and wolfed down a huge slice of homemade wheat bread w/ butter as family stood around yelling "NOOOOOO!" Guess what? Nothing happened!! I was pulling the burger off the roll and picking the coutons off my salad.

Now it seems like I can be in the same ROOM with bread and gluten and react. I don't try those experiments anymore.

I read every single label... every SINGLE time.

Edited to add... good luck! It gets way easier!!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,340
    • Most Online (within 30 mins)
      7,748

    AnnaMolly33
    Newest Member
    AnnaMolly33
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.4k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      You are correct in looking closer at her diet, as there may still be trace amounts of gluten, even from a gluten-free bakery (are their ingredient suppliers certified gluten-free?). 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/  For people with celiac disease hidden gluten in their diets is the main cause of elevated Tissue Transglutaminase IgA Antibodies (tTG-IgA), but there are other conditions, including cow's milk/casein intolerance, that can also cause this, and here is an article about the other possible causes:    
    • Scott Adams
      Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      You're doing an amazing job planning ahead for your son's first ski trip with celiac disease! It’s great that the hotel and organization are supportive, which makes a big difference. For dinners, consider simple gluten-free meals like pre-cooked rice or quinoa bowls with a protein (like grilled chicken or turkey slices) and steamed or roasted vegetables. These can be prepped at home, frozen, and reheated safely at the hotel. Gluten-free pasta with a simple tomato or cheese sauce is also a kid-friendly option that travels well. As for snacks, packing things like gluten-free crackers, cheese sticks, fruit, or granola bars will help ensure he has safe options throughout the day. It’s also wise to carry some single-serve condiments or seasonings he likes to make meals more appealing. Regarding accidental gluten intake, reactions vary from person to person. Some children experience immediate symptoms like stomach pain or diarrhea, while others might not react until hours later. It’s a good idea to carry supplies like wet wipes, an extra change of clothes, and medication if prescribed by your doctor. You might also want to brief the ski instructors about his condition and what to look for in case of exposure. With careful planning and preparation, you’ll set him up for a fun and safe experience. Enjoy your trip!
    • Scott Adams
      Unfortunately many doctors don't know the proper protocol for a screening for celiac disease. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Kathleen JJ
      Hi all,  Two weeks ago we learned our 7 your old has Celiacs and we are of course finding our way in his diet. However, we booked a skitrip a few months ago that will take place in February. We're going to the same hotel we went last year. The trip is non refundable so now I'm already starting to think how we will do this.   I've contacted the organization who was really really understanding and supportive. They've worked with this hotel for many years and the hotel (and restaurant of course) is prepared to do what they can. Storing and heating/preparing food that we bring is not a problem for them (which is already a huge relief) nor is providing fruits and vegetables (cucumber fi) to put in a lunch box as he will not be able to eat in the restaurants on the slopes. I checked, the ski area has 3 restaurants that offer gluten free options, but he is only 7 and with 7 year old's there's always the additional hurdle of 'yuk, I don't like the sight/taste/smell of it or I don't know it so I won't eat it' factor the consider 🙄. So we'll pack a lunch for him to take. [side question: if there should be an accidental intake and he gets a reaction, how strongly do we have to expect this: will he poo his pants? Will he be able to hold till he gets to the toilet at the end of the slope? Will he be able to still stand or will the pain make him having to lie down? We had the diagnosis rather by accident so have no experience with 'normal' symptoms or how violent they are and we would like to inform the ski instructors]   He loves oatmeal and we will bring gluten-free oatmeal for breakfast so that will be covered too, but for diners I'm already worried.    So my question is: Do you have tips for childproof gluten-free meals that could be easily heated or prepared in the hotel without risk of contamination?   Thank you for your reactions... Kathleen
×
×
  • Create New...