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
      126,430
    • Most Online (within 30 mins)
      7,748

    Court23
    Newest Member
    Court23
    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

    • Patty harrigan
      Absolutely disheartening. I always go for a certified product. Wondering if it’s worth the extra money and extremely disappointed in the organization for letting this happen.
    • Mnofsinger
      There was an old thread from 2011 that I came across but has been archived and I could not reply to it. I would like to reopen this discussion but really dive into a potential connection for a early "warning sign" for undiagnosed celiac people. Let me give some back story. I was diagnosed with Celiac disease in June of 2023. How long I had it before? I can't say for certain, because my wife and I had been on and off keto diets, which naturally I would cut out gluten containing food. However, there was an instance I went into the ER about 4 years ago for potential appendicitis, but that was ruled out as "nothing". Looking back it would be the pains in the abdomen from being "glutened".  Prior to being diagnosed I would always say our food needed less salt because it tasted to salty. My wife would always point out, "No, it could use more". Most people around me would say it's not too salty, and I would chalk it up to having a sensitivity to salty foods. I did not make this correlation until after my bloodwork had came back to normal range after eating a gluten free diet. In the span of four months I brought my tissue transglutaminase IgA results from a 45 down to a 4. After that, I did not go out of my way to focus on was my food "too salty" or not, I just never really mentioned that the food I was eating was too salty. In fact, I would find myself adding salt to foods. It wasn't until I had been glutened about 13 months into my gluten free diet, that the few days afterward I made a comment "This is too salty". As soon as those words left my mouth, I was like "Wait a second!", and said to my wife "what if all this time I thought the food was too salty was because of eating gluten?". Now, I know everyone's body reacts differently to to celiac disease whether someone is asymptomatic or if they have symptoms what symptoms do they have. I'm not saying I'm right, but I would be curious to know other's experiences and ways we could help other undiagnosed people get the proper medical treatment they need, by common early warning signs. So, on this old thread:   Some people explained the change was after, but I would be curious to know your experience! 1. My question(s) to the ones that experienced this after a gluten free diet, was it because you other more serious symptoms were occupying your mind while eating gluten that you never really noticed the "too salty" experience? 2. Is it possible that you had been accidentally glutened during your gluten free transition that spiked this reaction?       (Some context to this one: The reason I was able to get my numbers down so low in the 4 months after being diagnosed, was I went "over the top", We stopped going out to eat, we through out all our food, we threw out ALL of our cookwear/utensils/glasses/plates/cutting boards and I do mean EVERYTHING, and started with new, because I didn't want to be hindered by "hidden gluten". My wife tells me I have the tendency to go to the extremes 😄 ) Hope everyone finds this topic interesting and fun at the same time. So please, tell me your experience on this subject!
    • Scott Adams
      Since your symptoms are so severe and obvious, I can't really think of a compelling reason to get the confirmation, especially when weighed against some of the downsides of having an official diagnosis that are mentioned in the thread I shared. For people in the UK and other countries where their health care system offers food subsidies for those with celiac disease it does make sense--and most of those counties also have universal healthcare where the diagnosis would not be a factor.
    • Jula
      Hi Scott, Thanks for the great information. The "negotiation" is my euphemism for the discussion with the nurse at my doc's clinic and eventually, the doctor. It took place because they said I would have to be on gluten again for 6 weeks prior to the upper endoscopy/biopsy. As I stated previously, I am highly reactive to tiny amounts of gluten and the impact lasts for weeks and can be debilitating. The first time I had COVID I thought I had been contaminated at a friend's house because I had all those symptoms (extreme joint pain, muscle pain, exhaustion/fatigue, coughing, worsening asthma attacks, more) but no fever. It turned out to be COVID and the fever came a day after the initial group of symptoms. Granted, not all contaminations are the same in the intensity of their impact, but to have gluten every day for 6 weeks --- I know I could not handle it and as I'm self-employed I could not afford to work minimally for much of that time. Hence, the discussion/negotiation/whatever you want to call it. They asked me how long I thought I could tolerate it, I said maybe a week. Then I was contaminated at a restaurant and was reminded of the impact for the following 2.5 weeks and I started getting anxious about doing this to myself for such a long time, wondering how long it would last and worrying that the dermatitis herpetiformas would come back which took more than a year of excruciating itching to clear up completely. So, that's the back story. Neither the doc or the nurse mentioned 2 weeks, but it doesn't matter at this point. I don't think its worth it even for the one week, especially if as you say they may not be able to gather any information from that, although I don't know how that would be true being that my immune system knows with less than a crumb and gets busy attacking my small bowel. I can't imagine that wouldn't show up in there, but I guess that could be the case, so again, not worth starting the new year feeling like crap and unable to get the money I need to pay my bills/survive in the bigger picture. The blood work that was used for my initial diagnosis was done after I had been eating gluten my entire life, so well beyond the gluten challenge. Thank you, though, for taking the time to share the resources and your perspective!
    • Scott Adams
      New research: Glyphosate exposure exacerbates neuroinflammation and Alzheimer’s disease-like pathology despite a 6-month recovery period in mice https://jneuroinflammation.biomedcentral.com/articles/10.1186/s12974-024-03290-6 
×
×
  • Create New...