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

New - Is It Worth It?


DownWithGluten

Recommended Posts

DownWithGluten Explorer

Hi. I've never posted before. Lurked around a little bit before, then came back today. I have ... well let's see. I guess my first and main question is, I notice that once people become gluten-free, their tolerance for ANY gluten becomes a lot worse. Meaning, a lot more susceptible to horrible random attacks if one makes a minor slip-up, worse than perhaps the pain they experienced before. This sounds not so nice, especially coupled with giving up a LOT of food. (Probably 95% of what I've always eaten is gluten-ous food lol.) It's almost like...I suppose I'm wondering, is it worth it. I suppose a lot of you didn't really have a choice, being diagonsed with it. Though I haven't been, but I'm really wanting something to fix my problems and feel it is worth a shot. The only problem is, it seems once you start, you can't go back. Ever. Not even a spoon with wheat touching your plate. Lol...so...has it been worth it? I mean...does the good outweigh the bad? I guess I'm just hoping for some positive reincforcement that, despite the drawbacks, it really HAS improved your quality of life. That's what I'm looking for.

Um...and just in case anyone happens to be curious and wants to keep reading, I'll just give a little background as to what's up with me. I'm college aged and I have been at least diagnosed with IBS. I vaguely remember always having some digestion related problems growing up. Sensitivity to grease and whatnot, (doubled over after eating french fries, leading me to squeeze the grease out in napkins - all on my own, too! Dedicated little 10 year old). and often had this bloated feeling, where "lying flat" was the only thing that would relive my pain. I had my appendix out at 10 as well. Anyway...I remember my mom hoping that would fix some of my other pain, but alas, nope! But my stomach problems got noticeably worse around 16-17 years old. I ate some nachoes on a trip, and had one of those horrendously painful "D" attacks. You know, the type where you'd almost rather bang your head against the wall to knock yourself out as opposed to feeling the intense pain (which does at least get 'relieved' with a 'movement). Since then, it's been worse. I get those episodes every 2-3 months, sometimes more than one within a week...and have had this since then until the present moment. Also now alternating with "C" too. Grease and all that definetly aggravates it. And still had that bloated lying flat thing. And just overall feeling-like-crap, thanks to digestion. I'm also a bit intense, which doesn't help. Anyway. I finally started going to doctors about it. They took blood and a 'sample' to rule out Celiac's. They say I don't have it. They ruled out Crohn's as well. Thus I was left with the IBS label. The medication they provided for that made me bleed. So, so much for that. Recently, I attempted Flagyl in meager hopes that maybe I had that giardia parasite inside me all this time...but it didn't seem to have any effect.

Now, there's nothing I love more than my pasta and bread and all that sort of stuff. I rely on it so much. But, honestly, I'm so (literally) sick and tired of how horrible I feel all the time, and fearing those intensely and dehabilitatingly painful attacks every so often. I never just feel "good," if that makes sense. And, though I was probably in denial of it before, I MIGHt notice some slight connections with pasta eating. Feeling nauseaous after, feeling like a block is sitting in my stomach, just feeling more cruddy. I attributed that to 'over-eating' since I love pasta and all that so much...but now I'm not so sure.

Somewhere deep down I have a feeling, even if it's not Celiac, that maybe getting rid of the gluten will make it go away. (Oh, I should mention - a holistic doctor I tried told me to remove carbonation from my diet - and of all things, THAT'S the only instruction from any doctor on this that has had actual, direct and lasting results. Finally took away that bloated 'need-to-lie-flat' feeling pretty much completely, which I used to wake up with almost every day. Thank God for at least that). Anyway. But considering I've elminated pratically all grease, and soda, and all that great stuff - but still just feel generally bad digestion-wise...and I eat SO much gluten...I really think it could be worth a shot. And though I love pasta and bread and all that SO much...I'm really at that point that I'm willingly willing to eradicate it in hopes that it will make me feel better. (though that will be pretty tedious to learn...).

but then it goes back to my original question...is it worth it? Will the sensitivty to specks of gluten popping up in random food to haunt me make me regret it? Ah I don't know!

Thanks for any response in advance! Sorry this was so long.

edit: oh, and for what it's worth, I have hypothryroidism. The doctor missed my appendicitis but caught that! (back when I was 10...I went in. He thought I just had a stomach ache, but he noticed my neck should be checked for a thyroid problem. And yes, I did have it! Despite not showing symptoms. And then a few days later I went to the emergency room for the stomach pain...haha...anyway.) Hypothyroidism is an autoimmune thing too, if that's any indication.


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



Celiac.com Sponsor (A8-M):



marciab Enthusiast

Have you tried taking any of the common food allergens (wheat, dairy, soy, corn and eggs) out of your diet to see if one of these is upsetting your stomach ?

marcia

DownWithGluten Explorer
Have you tried taking any of the common food allergens (wheat, dairy, soy, corn and eggs) out of your diet to see if one of these is upsetting your stomach ?

marcia

Hmm...no lol, I haven't. If that was the case (it being one of those), I wouldn't even know which one to randomly start with! I suppose that's the point of keeping one of those food diaries? That might be a good place to start...

Nancym Enthusiast
I guess my first and main question is, I notice that once people become gluten-free, their tolerance for ANY gluten becomes a lot worse. Meaning, a lot more susceptible to horrible random attacks if one makes a minor slip-up, worse than perhaps the pain they experienced before. This sounds not so nice, especially coupled with giving up a LOT of food.

I think what you need to realize is that gluten intolerance leads to some very bad things down the road: Obesity or malnutrition, cancer, autoimmune diseases, T1 diabetes, autoimmune arthritis, possibly brain damage in some people, skin diseases... that's not counting all the stuff that just causes you not to feel your best everyday.

So regardless of whether you have major nasty symptoms or relatively light ones, like I do, in response to a random glutening, the fact is if you've got it, you have to treat it seriously. Otherwise you're flirting with a lot of trouble later on in life.

The worst of it isn't the belly ache you get after eating... its the life long afflictions you end up with later. I'd suggest getting the book "Dangerous Grains" and reading about it.

I think the worst thing that happens to me when I get contaminated is that I fart like mad and don't feel great for a couple of days. But I still try like the devil to keep that stuff away from me. It isn't the immediate reaction I'm worried about so much as possibly getting MORE autoimmune diseases or other things.

sunshinen Apprentice

i would suggest either doing an all out food allergy test or an elimination diet, because it very well may be some other food that is the problem.

if it is gluten, it is definitely worth it.

but you never know, not everyone who is sensitive to gluten has to avoid every speck. there are many people who are sensitive to gluten, but can still have limited amounts with no negative consequences. since you have ruled out celiac, you may be able to eliminate it completely for a few months and see how you feel. after some time completely gluten free, you can see if you can tolerate small amounts or not (if going gluten free helped to begin with). i cannot have a speck, but my aunt, who tested negative for celiac, can have gluten about once a week. she discovered that the key for her is a rotation diet. the problem for her had been too much chemicals in her system, so after she detoxified she got better and now just has to be careful not to overload her system with any one thing.

mommida Enthusiast

It is totally worth it! There are too many gluten free things to eat. You can find a very good gluten free product to replace just about anything.

L.

By the way all my tests came back negative too.

tarnalberry Community Regular

It's not a question of whether or not you're diagnosed - if you're reacting, you need to be gluten free so you don't damage your intestines. The actual diagnosis is irrelevant. It is worth trying, if you think that gluten is a problem.


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



Celiac.com Sponsor (A8-M):



celiacgirls Apprentice

It is worth it to me. I didn't have any abdominal symptoms before but I got dx'ed with gluten intolerance through Enterolab and tried eliminating it to see what would happen. Within 2 days, I could tell a difference.

I am on of those people now that can't have even a trace of gluten. When I have it by mistake, I get very tired and irritable and moody. It lasts for 2 1/2 weeks so it is definitely worth going to great lengths to avoid it. I think that is how I felt all the time before and I was just used to it so now it seems worse.

I think if you feel better you won't mind making the changes necessary to keep feeling good.

happygirl Collaborator

It is DEFINITELY worth a shot!!!!

Ursa Major Collaborator

Somebody suggested that since your bloodwork was negative, you've now ruled out celiac disease. I disagree. Those tests aren't very reliable and yield false negatives, and the same can be said of biopsies.

And anybody who is gluten sensitive and thinks that they can eat gluten once in a while without negative consequences is fooling himself. The damage will be there, even if you don't feel an immediate problem. Or you don't recognize the symptoms as coming from gluten.

You may not necessarily get gastrointestinal symptoms when glutened, but rather neurological ones. Like depression, brain fog, down the road you might get diagnosed with MS (caused by gluten intolerances), neuropathies, cancer, Alzheimers, and many others.

And yes, eliminating gluten if it is causing problems is definitely worth it. You're obviously sick, and will likely get much worse over time, as a lot of us did who had ignorant doctors. We didn't have the Internet when I was your age, so I had no chance of figuring it out on my own then, as I was finally able to at the age of 52 last year. You don't want to get as sick as I am now, believe me.

So, my advice is to try going gluten-free immediately. You might also want to eliminate dairy and soy at the same time. Then, if you feel better, you can challenge with each one of those in turn (two weeks apart to catch any delayed reactions) to see if you react. If you do, you know to keep avoiding that particular food.

If you still have significant problems after a few months, you may need to test for other intolerances. But lets not think about that yet, one step at a time.

I hope you figure it out.

Guest Kathy Ann

I disagree about rotating gluten. I don't believe it is the same as other lifestyle acquired allergies that can be eventually eliminated. IF you are honestly gluten intolerant or celiac, even small amounts will do SOMETHING inside of you whether it shows or not. That's what all the research says. One study said 1/48th of a small slice of bread still gave laboratory tested damage results in the people being tested. They could go smaller, but I guess they decided that was small enough to get their point across. A person may outwardly tolerate small amounts of gluten like they would small amounts of arsenic without "feeling" anything. But rest assured, the damage is lurking around in there and will come back to bite you in the end, in my opinion.

Riayn Newbie

There is a disorder called non-Celiac gluten intolerance where the gluten isn't damaging your intestines, but it does make you feel just as sick.

Also they are finding that 40% of people diagnosed with IBS have fructose malabsorption and one of the highest foods with fructose is wheat. Therefore you may find it helpful to go wheat-free.

sonja69 Rookie
There is a disorder called non-Celiac gluten intolerance where the gluten isn't damaging your intestines, but it does make you feel just as sick.

Also they are finding that 40% of people diagnosed with IBS have fructose malabsorption and one of the highest foods with fructose is wheat. Therefore you may find it helpful to go wheat-free.

sorry, but I have other data.

rye flour (not whole grain) has 0.7g fructose in 100g. rice, buckwheat flour, wheat flour and barley have only 0.1g per 100g.

foods with high fructose content are of course fruits, veggies, sugar (sweets), honey and processed foods.

it's no wonder that people diagnosed with IBS have a malabsorption problem or are celiac, since IBS is a symptom or syndrome, not a desease, and sometimes just a diagnose from a either stupid, lazy or ignorant doctor.

Guest nini

I'm glad Ursula brought up the fact that just because the tests were negative it does not mean that you can rule out Celiac, EVER... there are way too many cases of people that I have met that have had repeated blood tests and biopsies come back negative, only to be told it couldn't possibly be Celiac, so they continued to eat gluten foods and got sicker and sicker until one day their tests came back glaringly positive for it with severe damage... the damage is patchy and can be missed, the tests aren't sensitive enough, meaning, if they are positive you've got it, but if it's negative it just cannot rule it out, despite what the medical community tells us, there is just too much evidence to the contrary.

Yes it's worth it. Positive dietary response is the most valid way to tell if you have a problem with gluten, and regardless of if it's Celiac or Gluten Intolerance, you still need to treat it the same way. Besides there are some really great gluten-free pastas out there and the breads are getting better and better.

jaten Enthusiast
......One study said 1/48th of a small slice of bread still gave laboratory tested damage results in the people being tested.....

I've heard of that study but haven't run across it myself. Kathy Ann, do you or someone else know where I could read more about it? My family and friends are very supportive since my Celiac diagnosis, but that would be an interesting read! Thanks in advance!

spunky Contributor

For me, living without gluten for the past 10 months has definitely been worth it!

I'm not diagnosed...have had on and off IBS-like troubles forever, but they weren't severe enough to really grab my attention (I thought everybody had that!!!).

Then I went vegan around 10 years ago...giving up all dairy and casein did help some, but I found myself having lots of newer, stranger, more difficult problems...like, diarrhea, sorta, but also it was kind of constipation, and I had the sensation of broken glass in my efforts to use the restroom...having diarrhea was always easy before, but after becoming vegan, it was like constipation/diarrhea...I had to go really bad, woulld have an accident if I didn't get to a restroom quick enough...but then I couldn't go when I got there...weird thing to describe...my poor rear end just felt all inflammed, cut up, and sore and painful as all heck after living like that for a while. I couldn't figure out the problem...other vegans said it was high fiber and my system would get used to it after a while...well, it only got worse and worse.

Five years ago, I read about gluten and decided maybe that was my problem, since being vegan meant for me, filling up on lots of breads, pastas, gluten-based meat substitutes, etc. I tried going gluten free...but I didn't see improvement...so I gave up and went back to my old gluten ways. Now I can look back and realize when I was "gluten free" back then, the first time I tried it, I was ingesting enough gluten to keep me sick...I was buying things from health food store bins, dusty with flour, I was eating oats, because I'd read they were okay (NOT for me!), I was using soy sauce and licking envelopes and doing a lot of other little minor offensive that were interfering with my gluten free trial. Also, I was in my mid-forties, and I thought I should feel well within a few DAYS of gluten free....didn't know it could take as long as it has.

Meanwhile...back to gluten after that and symptoms gradually becoming a daily, unbearable thing for me. I hate doctors and will not go, so I had to get serious and figure this out. With the help of searching through messages on this board, I began to realize that I hadn't REALLY been gluten free the other time around, and that at my age it might take a long time to really see results.

So, 10 months ago, at the age of 52 (now 53), I started all over again. I printed off the safe and forbidden gluten lists, carefully read ALL labels several times--in the store, at home, over and over, even if I've used the product before. Learned that if I'm not entirely sure something is gluten free, I leave it alone. Also, I gave it more time, gluten free, before deciding if I was better and then giving up.

I kept careful notes of my sypmtoms...after the first two weeks, my symptoms went through a big change, but weren't better...just different. That was my first clue something might be happening. Over the first 3 months, my sypmtoms changed their patterns a lot, but I would still classify myself and sick and suffering...not well. Around 6 months, I could see I was BETTER, but still had chronic problmes almost every day. I might add I was still learning to avoid gluten during these first 6 months, because there's just a lot of sneaky ways it can get into you. At 7 months, the sun came up, and my world got better. It really was like the sun coming up...my attitude, my sense of hopefulness, my happiness, my tummy...EVERYTHING in my life turned around. Things were good until the 8 1/2 month mark, when I ate soup at someone's house...she said it was both vegan and gluten free. I ate one bowl, thinking by her explanation that everything was okay...I don't know what happened there, never figured it out, but I was sick for 3 1/2 weeks, just like I had been back before I tried gluten free. I felt hopeless, and felt like giving up my gluten free trial, because it seemed I was just back at ground zero...but I kept going on, looking at my symptoms chart I made up and reminding myself I WAS pretty well before that happened. Finally, the symptoms wore off and now, here I am at 10 months...and I can say I feel better than I remember feeling for decades. It seems I'm still getting better all the time.

Now I have gone from careful about gluten, to paranoia. I like staying away from the stuff. It's a hassle, but for me, it's been the difference between night and day. I don't know if gluten is your problem or not, but I'm just telling how it happened with me, in the hopes that it might give you more clues as to finding out for yourself how to get a grip on this thing, gluten or whatever it is, and hopefully get yourself well.

Best wishes for getting well.

sunshinen Apprentice
I disagree about rotating gluten. I don't believe it is the same as other lifestyle acquired allergies that can be eventually eliminated. IF you are honestly gluten intolerant or celiac, even small amounts will do SOMETHING inside of you whether it shows or not.

That's a big IF and one that can be very difficult to determine. If something else is going on in your body, it can become hard to digest just about everything, and it seems likely gluten would be one of the first things someone whose system is breaking down would have trouble with. Some people will do better on a gluten free diet, even if they are not celiac or "gluten intolerant" in the strictest sense of the term, and while going gluten free can help them heal, it doesn't always have to be a lifelong, absolute avoidance.

With Aura, there is no evidence that gluten is the problem--the reactions mentioned involve nachos (corn?) and grease (anything that makes digestion difficult). I agree gluten cannot and should not be ruled out. But chances are high that if both the blood and "sample" (stool?) tests came back negative, that something else is the underlying problem. YES, there are false negatives, but we can't assume that gluten is the answer for everyone or that everyone who can be helped by going gluten free will need to be absolutely gluten free forever. I do think that when starting the diet, absolute avoidance needs to be done for a few months or more so that you know what it feels like to feel good before you start trying to determine if you can tolerate small amounts or not.

That's what all the research says. One study said 1/48th of a small slice of bread still gave laboratory tested damage results in the people being tested.

That's what the research on biopsi-proven celiac shows, but there is very little research on environmental food sensitivity. Obviously a lot has yet to be learned about the body and gluten, non-celiac gluten intolerance, and food sensitivity in general. Rather than scare people away by making them think that if they go gluten free and feel better, they will have to avoid every speck or face dire consequences, it seems much better to let people try the diet, and let them determine by their own reactions how careful or not they need to be.

But ultimately, I'm a carat person :D, not a stick person. As research on heart attack patients and their willingness to change their diets shows, the stick (threat of dying) approach doesn't really work to induce change for something like 90% of patients. I say we promote the carat, the feeling better, and let feeling worse when gluten mistakes/challenges are made speak for itself. The carat is the reason we change and are willing to stay with it, the stick just keeps us vigilant once we know how much good the diet has done for us.

DownWithGluten Explorer

Hey everyone, thanks for your replies!! I'm pretty busy at the moment to give a good response, but I did read ALL of your input.

So, it definetly seems like I should do it. It is worth it both health-wise and feeling-better-wise. And that I should make sure to REALLY do it when I do! It'll be hard, but I do think it's worth it. And, like one pointed out, I am young now so it's probably better to start now then wait until it gets worse. And since my symptoms worsened 5 years ago...no they really haven't gotten better at all. Maybe worse. At least in the sense that, I'm ever so weary of dealing with it day to day. Earlier this fall, I even had the feeling "how the hell am I gonna put up with this pain for the rest of my life?!!" I mean, really feeling down with it. Not very fun to look forward to all that crappy pain and whatnot, and I am so young! So, sheesh, if it could get worse...yeah.

I'll give it a shot. Thanks for your responses, everyone. I'll find a way to fix this, I'm determined lol!!

And btw, does celiac contribute to depression or anything? Or is it just, since our bodies are so miserable, naturally, we sort of become so as well? I've never been diagnoses as depressed (...never went in to check ;) )...but I'm definetly not a generally 'cheery' person or...something. I'd even say I'm pretty irritable most of the time. All jaded and morose and TIRED, and I'm not even that old yet! Lol. Obviously 'life' contributes to all that too but...I'm just wondering if any of you notice a correlation there too, with the gluten-intolerance thing. It seems hinted that some do. Again, it's worth a shot!

And interesting about IBS maybe being frutcose problem. If gluten doesn't work, I'll try that...or the dairy or...any of that. My digestion is pretty horrible, and it's getting to the point now that I don't feel like I can eat anything. Ruling out the greasy stuff seemed to be okay at first but, not so much anymore. So, if I can find something that is really worsening it overall to get rid of, that would help. I always feel that IBS people...I mean, our symptoms range so much, if you look at those message boards. I see some how match me exactly, and some who's symtpoms are completely unlike mine. I feel we probably all do have specific and varying problems (maybe mine are the same as those who do match me, etc)...but they are eithere merely undiagonsed, OR doctors aren't even yet aware of their existence. Maybe there are tons of digestive problems yet to be pinpointed and discovered. And till then, it's all just IBS...lol.

Anyway, thanks again for your responses! this ended up being long anyway!

celiacgirls Apprentice

I think it does contribute to depression. I don't think I was ever dx'ed with depression but I did get an antidepressant for PTSD when my daughter was hurt. When I got on that, I could tell that I had been irritable and anxious my whole life. I was also always tired and didn't really want to do anything. I stayed on the a/d for about 18 months. Then I went gluten-free and within 2 days, I could tell I didn't need the antidepressant any more. I felt giddy from too much serotonin, I think. So I quickly tapered off the a/d and haven't needed it since. I also don't need a nap anymore. You may find that all those things that you think are just irritating are not really irritating at all when you go gluten-free. It is amazing.

Guest cassidy

It is totally worth it. My blood work was negative but I feel like a new person.

I read what you said about having these attacks. When you are in the middle of that I bet you thought more than once "if there was anything I could to to prevent or stop this - I would." Once I figured out what was making me feel that crappy being careful around gluten was just me trying to prevent a bad attack. It is wonderful not to wonder how I'm going to feel tomorrow or if I'm just going to feel too bad to do any of the things that need to be done. I feel much more in control because the pain doesn't just happen to me whenever without reason. That makes it completely worth it to worry about a crumb. Maybe we do get more sensitive or maybe we were always that sensitive because I know I never felt good when I was eating gluten, I would have good and bad days but my good days were never that good.

I lived on bread and pasta - I hate meat and carbs were always my favorite. I love Tinkyada pasta and I'm perfectly happy eating that like I ate my old pasta. I have plenty of things that I like to eat gluten-free now and it really isn't hard to eat at home.

  • 4 weeks later...
DownWithGluten Explorer

Thanks again! I was just on winter break, and my mom and I did a lot of researching about the gluten-free thing. (Books, lists, calling companies, etc ...). I gave in and started the diet January 8th...so, no turning back now! Lol. I'm ready for things to get better for me though, so. While part of me hopes this isn't it...part of it DOES hope it is, so I can no longer have those wretched problems.

I can see that hardest thing so far is going to be eating-out...that's something I'd rely on for socialization, and something I enjoyed. Buuuut that's definetly tricky for gluten-free people. Hmm. But it certainly seems do-able as far as eating at home. I'm realizing that there are more things I still CAN eat than I thought I would be able to when I first started thinking about being glutenfree. Anyway, here's to things getting better, hopefully! I may be posting around here more asking if certain foods are gluten free and whatnot, lol...

Nancym Enthusiast

Not everyone has horrible symptoms when they're glutened. I intentionally glutened myself and my worst symptom was feeling depressed and lethargic for about a week. But hell, I'd take that over feeling brain fogged, crampy gut, and the other symptoms I had any time!

I agree though, in my case it wasn't just gluten, it was gluten and dairy. I had to change a lot of stuff but it was definitely worth it.

You might want to look into trying an elimination diet, or the Paelo Diet. I think the Paleo diet has a certain cachet these days among young people, so it might be sort of hip to tell people you're trying to eat like pre-agricultural man. :D

hedra Newbie

New here, too...

I wanted to note that the info on fructose in grain isn't the whole information, if you do have a fructose malabsorption problem. It isn't just the fructose value, it is the total fructose load (amount consumed or in a serving) *AND* the glucose:fructose ratio. While there are other grains that have fructose, there are none I know of that have as poor a glucose-fructose balance as wheat. (And DFI is also linked to depression.) Also, from the numbers given earlier, that looks like 'white' wheat flour's numbers. DFI people can often tolerate white/processed flour (including unbleached), but not whole wheat. So, that makes a difference for the numbers...

A lot of people with Dietary Fructose Intolerance do better on a gluten-free diet because they are avoiding a primary food source that has a bad glucose:fructose balance. My son has been diagnosed with fructose and lactose issues. celiac disease may be a possible issue, though he's been tested by some major experts in pediatric celiac and they say no. Might be non-C gluten intolerance, though. We'll be checking into that as well. So far, he seems to have no symptoms on a white-flour type diet with moderate fructose intake as long as those things have good glucose values as well... we'll see. Want to be sure I have the right thing! No point keeping him off apples if wheat is the problem, eh?

Regardless, since you're going gluten-free, if you see results, you can test for separate fructose issues (once you are pretty certain you've reached a healed state). You can test it by eating foods with high sorbitol content (apples, pears, cherries, etc.), and/or poor glucose:fructose ratios (apples, again, also mango is a good one for really bad balance of the two).

Celiac does mess with the fructose tolerance until you've healed, though, so it makes reasonable sense to go there first. Good luck feeling better!

sfm Apprentice

I guess only you can decide for sure if it's worth it. I will say that feeling so much better feels like a miracle to me. The occasional "accidental glutening" is awful - but I think that part of the reason for that is that once you begin to feel better, you don't want to feel that sickness again. I have noticed that some people say that the reason the intolerance is worse after going gluten free might just be because you have something to compare it to - instead of feeling sick all the time.

I have only been gluten free for a month and change - but I can say it feels worth it to me to stay this way for the rest of my life, because it was actually kind of frightening to feel so sick, all the time, no matter what I ate...

And since there are so many dangers of continuing to consume gluten when you are intolerant, it might be worth a try.

Good luck..

Sheryll

lonewolf Collaborator

YES! It's totally worth it. Almost 11 years ago I was told to eliminate wheat/gluten, dairy, soy and eggs and to make it a bit more restrictive throw out meat and poultry, legumes, potatoes, tomatoes, peppers, bananas and a few other things that I can't remember. Several friends and relatives told me that "it isn't worth it" and to just find medications that would help my problems. Well, it was worth it, because today I am healthy, rather than in a wheelchair crippled by arthritis, I'm not suicidal, I don't have IBS, horrible stomach cramps and gas, psoriasis all over my face or kidney disease (all things that have cleared up). Now I "only" have to avoid gluten, dairy, soy and eggs and every day I thank God that I found a way to feel good and it's ONLY having to avoid some silly foods.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,366
    • Most Online (within 30 mins)
      7,748

    Cheryl Machovec
    Newest Member
    Cheryl Machovec
    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
      In case your tests turn out negative you may still want to try a gluten-free diet. Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Jack Common
      Thank you for your answer. Well, I'm going to eat at least 5 slices a day, each of them is 35 grams. I think I'll do blood tests again after four weeks. If the results are negative or not clear, I'll continue the challenge and repeat blood tests again after another four weeks.
    • 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!
×
×
  • Create New...