Jump to content

  • 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

How Long Before You Figured It Out?

Twister2

By Twister2
in Coping with Celiac Disease

Recommended Posts

Twister2 Contributor
Twister2
Posted

HI all! I have been relatively gluten free for about 2 weeks now, but I still feel like am in the dark about being "totally" gluten free. How long did it take for you to get the gluten worked out in your diets? It seems like so many Celics sometimes disagree on some products that are "safe".

Cheers!

Twister2

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

Celiac.com Sponsor (A8-M):


haans42 Newbie
haans42
Posted

Hi,

Wow, I think it takes years to get this completely figured out. There is gluten in lots of foods you would not expect. Some medicines and vitamins use starch as a binder, this starch may or may not be gluten-free. Carmel color may be made from wheat, the list goes on and on. Cereal with malt flavoring is not gluten-free. Many soy sauces are made with wheat. Basically if it is a processed food and is not labeled as gluten-free read the ingredients very very carefully.

Haans

FreyaUSA Contributor
FreyaUSA
Posted

Eight months gluten-free and this entire last week I've been symptomatic! No idea what I've gotten in to, maybe it's something that has changed its ingredient supplier recently. So, eight months apparently is not long enough :unsure:

pixiegirl Enthusiast
pixiegirl
Posted

Well I'm about 8 weeks trying to gluten-free and I was doing well until Thanksgiving, but I think, generally.... I have a good idea of what is what. I'd say if it wasn't for reading this list every day I'd still be so far in the dark.... I've really gotten a good handle on how wide spread gluten is from all the posts here.

I've also come to realize that people who have been gluten-free for years sometimes can get glutened accidently. So I'm just going to do the best I can. I've copied all those big lists and am making a sort of Master list for myself.

Susan

darlindeb25 Collaborator
darlindeb25
Posted
:( sorry twister---i have been at this for over 3 years--3 yrs 4 months, to be exact and i still make mistakes--manufacturers change ingredients without telling us-- :rolleyes: what are they thinking--anyways, sometimes we become to trusting of a product and may not look at the ingredients for a while and bam :angry: they change it or they have a product that looks so much like the other and it has gluten---i barley'd myself and didnt know it for 2 weeks, it didnt have the same effect on me as wheat--it didnt give me any symptoms, but i bet it was in there telling my villi to lay down :ph34r: and now i have finally realized i have to be soy limited too :( we celiacs can never let our guard down and we are always learning--this is our lifestyle :P like it or not---it does get easier, but we always have to watch :) deb
mommida Enthusiast
mommida
Posted

I've been trying to be gluten free for about 12 months. I forgot to check out the lip gloss I wore yesterday. No need to call the manufacturer, since I reacted to it.

The thing that bothers me most is the codex system rating for "gluten free" foods. As long as the product is within the range of parts per million it is labeled gluten free.

Laura

Guest NancyNet
Guest NancyNet
Posted

Hi Twister, I agree with Darlindeb25, I have had Celiac since 1996 and thought I pretty much knew it all about what to stay away from. Well, I just recently learned the the EQUAL sugar substitute I had been putting in my tea every morning had gluten in it! All of the sugar substitutes do!! I am now back to using regular sugar, haha... It is always a trial to try and stay Gluten Free, you have to read the labels when shopping all the time. Eating out is the hardest I think, restaurants to not help at all :angry: I usually order very basic things when out not sauces or processed foods. You can write or call companies like Kraft ect. to find out what they offer as gluten free..look on the labels of the packaging. Take Care, and good luck, we never feel good all the time... NancyNet :D

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

Celiac.com Sponsor (A8-M):


Guest imsohungry
Guest imsohungry
Posted

Hi Twister!

Unfortunately, I don't think there is an average amount of time for figuring all of this out. It can be a slow (and very confusing) process. :blink:

I know that I draw a lot of parallels (I hope ya'll don't mind)...but the same thing goes for my epilepsy. I have been diagnosed for over 12 years; I've researched epilepsy as a patient, and even studied neuropsychology in college...and just this past year I found out that a trigger for my seizures is sudden hot water/temp. change (i.e. showers). After doing MORE research, I found out that this is not unheard of.

My point??? After 12 years of REALLY studying my health and self-care, I learned something new to avoid (I now take tub baths) to avoid those unnecessary seizures.

Anyway, I think that I (and you) are going to find that this is a continual learning process. However, I will tell you that I have been diagnosed for two months, and that initial "thrown to the wolves" feeling has lessened. As you learn to understand labels and do research, you will gradually build up confidence. Even the "old-timer" celiacs occasionally gluten themselves. We all do the best we can do.

So, for now, make your best effort and slowly "perfect" your skills as you learn.

Much hugs and welcome! -Julie B)

FreyaUSA Contributor
FreyaUSA
Posted

Nancynet, I've been using DaVinci brand of flavored sugar free syrups (sweetened with splenda,) I called the company and they are all gluten-free. I've also been using the splenda packets :blink: never called them! Do you know if this has gluten? I guess I call the company Monday. (Maybe that's what's been getting to me this past week? I hope not.)

Guest NancyNet
Guest NancyNet
Posted

FreyaUSA, that was how I found out they all have gluten, I was going to switch to Splenda, and I read the label to make sure and saw malt-dextrin or dextrin on the label.. Then I checked all the others and saw they all carried that same ingredient, but check anyway and let me know ok? and thanks for the info, I need the help, as we all do... Nancy :rolleyes:

lilliexx Contributor
lilliexx
Posted

splenda is gluten free.....( unless somethings changed very recently)

anyway...in my first few months of being gluten free i was soooooo careful!! but in the last month i havnt been that careful ( stopped reading labels, becuz i thought i had it down) but i have been having pretty bad stomach problems in the last couple weeks. so even when you think you have everything figured out, you still need to be careful. i always learn my lessons the hard way <_<

darlindeb25 Collaborator
darlindeb25
Posted
;) geez. i about flipped when i read equal contains gluten :o ---then i was relieved when you said maltodextrin ;) ----maltodextrin in the US is safe ;) --it is made from corn--i believe they must state if it isnt made with corn, anyways, my sister the dietician checked it out and it is safe :D --i know that equal, nutrataste, sugar twin, splenda--most all sweeteners are gluten-free---i dont want to go back to sugar :( deb
Guest NancyNet
Guest NancyNet
Posted

Thanks Deb for letting me know about EQUAL, I never heard that MaltDextrin is always corn in US unless otherwise stated.. I was told by doctor and websites to stay away from it all these 8 years! Ugh!! Thanks Again Wow,Iam happy! I also want to apologize for saying SPLENDA was not GlutenFree. I looked up there Website and they do not list themselves as glutenfree in there info., but they do give gluten-free recipes using Splenda, so it looks like you are right there also.. I wish they would make it easier for us to see if we can use a product right on it's label! :angry: Have a Good Day and Feel Better...Nancy :huh:

tom Contributor
tom
Posted

I ended up making 2 gluten mistakes after starting gluten-free.

At the beginning tho, i felt SO much better it didn't occur that gluten was still sneaking in. Then maybe 2 mos in, i'd realized that i'd plateaued and started rechecking EVERYTHING.

Although i was sure i'd checked every ingred in every pill b4, i ended up finding that the Vit C i'd been taking every day had a modified food starch that turned out to probably be from a grain source. (wheat or barley, not corn)

Ahhh here's the quote:

The only Longs Drug Stores brand of vitamin C that contains modified food

starch from a gluten-containing grain is Longs Vitamin C 500 mg tablets

with a product ID number of LG 4210 PL 440. This is according to Liener

Health Products, the manufacturer of Longs Drugs Stores vitamin C.

So w/ a gluten-free replacement, i started feeling like i was getting better again.

The other error was caught much quicker. Silly mistake and i like to blame it on the fog still bein around at the time. I'd checked toothpaste prev and it was fine. THen it ran out and i just grabbed the tube i had layin around. I didn't check it. I think it was Aim, but whatever brand it was i know it wasn't on the safe lists i've seen. Second day in, i realized what was different and checked it and stopped using it and i think i've been 100% gluten-free ever since.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,670
    • Most Online (within 30 mins)
      7,748
    CDR40
    Newest Member
    CDR40
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Medication

      By Scott Adams · Posted

      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.