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

Deciding To Start A Gluten-Free Diet

smpalesh

By smpalesh
in Coping with Celiac Disease

Recommended Posts

smpalesh Explorer
smpalesh
Posted

I had a blood test for celiac and it was negative and yesterday I had a biopsy and won't have the results until December 17. At first I had decided I would try gluten-free for 3 months anyways to see if I have a gluten intolerance and to see if it improves my symptoms but now I am struggling with the idea. If I knew I had celiac then it would be easy to stick to it but if I don't even have celiac then how am I going to be able to stick to such a restrictive diet. Originally I was going to start the diet after my biopsy but now I am wondering if I should even bother. There are a million different things that could be causing my symptoms so why put myself through all the trouble?? I am very conflicted right now. For those who don't have a celiac diagnosis how do you make yourself stick to the diet?

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

Celiac.com Sponsor (A8-M):


gatita Enthusiast
gatita
Posted

Well, my guts react very strongly to gluten (in a bad way) and now I also seem to have a wheat allergy to boot. So that pretty much leaves me no choice but to be gluten-free.

Have you tried eliminating and then re-introducing gluten into your diet? I did that twice, and each time the nasty results clinched it for me.

ps. I mean only if your biopsy is negative of course.

rosetapper23 Explorer
rosetapper23
Posted

Yes, this is true--if you eliminate gluten and feel great...and then reintroduce it and feel horrible again, you have your answer. You won't know if you don't try, right? The sooner you try, the sooner you may start feeling well. Believe me--you'll have your answer soon enough, and then you won't mind the "restrictive" diet (which really isn't very restrictive at all).

SMDBill Apprentice
SMDBill
Posted

The only difference between knowing the answer and not knowing is knowledge. However, if your body reacts positively without gluten and negatively with it...the decision is simple. Plus, if you do have celiac and don't get definitive proof that you don't, ignoring it and continuing to consume products with gluten can have long term effects you may want to avoid. The decision comes easy when you learn your body can be permanently and irreversibly harmed by continuing down the same path, but if you don't have it and gluten-free does not help, then you're right...why restrict yourself at all. Eat what you want and have your GP focus in on what could really be the problem.

Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

Feel much better without gluten. Like, much better.

Also, I like having good fresh food.

And, the good folks here will help if you have a wobble.

Keep investigating other possibilities, ask lots of questions

Good luck, and welcome

:)

smpalesh Explorer
smpalesh
Posted
  • Author

How long would I have to be gluten free before I could "challenge" it? I know you are supposed to do a minimum of 3 months but if I did gluten free for one month and then ate gluten would that be enough time out of my system to make me feel like garbage if I am gluten intolerant? I am very stubborn and like proof for things so I think it would be beneficial for me to see that it is actually the gluten making me feel like crap, as dumb as that sounds. Also how do you get started? Do you just wake up one day and say no more gluten? I keep thinking I need to do a bunch of stuff to prepare or something.

GFinDC Veteran
GFinDC
Posted

.. There are a million different things that could be causing my symptoms so why put myself through all the trouble?? I am very conflicted right now. For those who don't have a celiac diagnosis how do you make yourself stick to the diet?

Putting yourself through "all the trouble" of following a gluten-free diet will eliminate one of the "million things" that could be causing your symptoms. You need to start somewhere right? Eating gluten-free is a heathly diet that is good for you. It doesn't need to be complicated or expensive if you follow a whole foods diet. After you have been gluten-free a while you may not want to go back to eating the "junk" food from before. If you follow a gluten-free diet for 3 to 6 months and then do a gluten challenge for a couple weeks your body should let you know if it likes gluen or not. If your symptoms don't return then you are probably ok with eating gluten. Even if that turns out to be true, you will have learned how to eat healthier, more wholesome foods that will support your body better than processsed junk foods. And that knowledge can help you the rest of your life. Even if you have some other disease, a healthy diet is a positive for your health, not a negative.

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

Celiac.com Sponsor (A8-M):


Takala Enthusiast
Takala
Posted

I get sick when I eat gluten, so I am highly motivated to avoid it. I don't have a formal diagnosis, either. I knew within 24 hours that I had found what was bothering me, but I wasn't taking a bunch of masking medications, and I pay close attention to how I feel and react to things. I had lots of non gluten food in the house, which is really important, and had my spouse gradually eat up the "bad" regular food. After several years of sometimes making mistakes with cross contamination, I had it more or less sorted out that I just had to be really insistent on having safe food available, in all situations, to protect myself.

Bruisin Newbie
Bruisin
Posted

I had a blood test for celiac and it was negative and yesterday I had a biopsy and won't have the results until December 17. At first I had decided I would try gluten-free for 3 months anyways to see if I have a gluten intolerance and to see if it improves my symptoms but now I am struggling with the idea. If I knew I had celiac then it would be easy to stick to it but if I don't even have celiac then how am I going to be able to stick to such a restrictive diet. Originally I was going to start the diet after my biopsy but now I am wondering if I should even bother. There are a million different things that could be causing my symptoms so why put myself through all the trouble?? I am very conflicted right now. For those who don't have a celiac diagnosis how do you make yourself stick to the diet?

You know what feels better for your belly. Keep in mind that YOU are the one that hurts when you eat/drink something your body can't process. I have fallen off of the wagon before, and suffered for weeks after. That's what keeps me from doing it most days....now that I know how it feels to NOT have tummy pain all of the time, I don't want to go back to all that pain.

I'm to the point that I have to juice. I may eat one small meal per day, but the rest of the time I juice (I AM NOT SUGGESTING THIS TO ANYONE, IT"S WHAT I HAVE TO DO TO BE OKAY), and I've been so much happier & the belly bloat is mostly gone.

I keep all temptations that are my weakness, like no doughnuts in the house.....but the ones that I care little about are here for my family (like bread for sandwiches). Avoiding all temptations is what works for me.

And now I'm staying away from restaurants because of an accidental exposing to gluten because it hurts so bad!

hugs you!

bartfull Rising Star
bartfull
Posted

I think a gluten-free diet would be a good place to start because it does not require medications with all their expense and side effects, and it doesn't require surgery.

You need to be strict about it though. A lot of folks go gluten-free, but they don't consider cross-contamination. Go read the "Newbie 10 " thread to learn about places that gluten hides. Then give it a good try. Three months isn't that long. It'll fly by!

Also, be aware that you will feel worse for a couple of weeks. You will go through withdrawal and probably have headaches and constant hunger. Don't let that bring you down. A lot of us find that even though we get headaches, the OTHER symptoms clear up pretty quickly.

Good luck. If you have any questions, this is the place. We have all been through it and are more than glad to help. :)

DavinaRN Explorer
DavinaRN
Posted

Truthfully it just depends on how sensitive you are. I don't have a formal diagnosis, either. I can tell usually within an hour if I have accidentally had gluten. I feel as if I have the stomach flu when I eat it now. Before going gluten free 5 weeks ago, I just always felt bad.

smpalesh Explorer
smpalesh
Posted
  • Author

I am currently on day 3 of my diet. I decided to go for it. I definitely don't feel any better yet and I am STARVING! I am eating lots of healthy foods and making sure I am gluten-free. How long until I start to feel remotely better if gluten is the problem?

shadowicewolf Proficient
shadowicewolf
Posted

gluten withdrawl... its just as real as any other addictive withdrawl.... your body will crave it and it will cause many a mood swings and such....

It takes time dear, just hang in there....

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Scott Adams
      - Scott Adams replied to Thoughtidjoin's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Dried Chickpeas

      If a package of dried chickpeas or lentils says “may contain” or “may have been cross contaminated,” that usually means they were processed in facilities that also handle wheat, barley, or rye. The concern is not gluten dissolved on the surface like dust that can simply be rinsed away, but small fragments of gluten-containing grains that may be mixed in duri...
    2. knitty kitty
      - knitty kitty replied to Thoughtidjoin's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Dried Chickpeas

      Welcome, While picking through chickpeas and lentils I have found little pebbles and on occasion, a kernel or two of wheat. Farm equipment and transport trucks are used to harvest different crops. It would be really expensive to have separate trucks and packaging lines for each crop. I have found sorting or picking through the peas or lentils...
    3. trents
      - trents replied to Thoughtidjoin's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Dried Chickpeas

      Welcome to the celiac.com community, @Thoughtidjoin! I would think so, yes. But you need to realize that cross contamination studies with lintels have shown the real problem isn't only coming in contact with gluten containing grains in processing but in the actual mixing in of cereal grain seeds in significant quantities with the lentils. I think it...
    4. Scott Adams
      - Scott Adams commented on Scott Adams's article in Origins of Celiac Disease
      7

      Do Antibiotics in Babies Increase Celiac Disease Risk Later in Life? (+Video)

      I think you're reading way too much into this study--it is a large population-based study, and when they do these they aim not to focus it on a particular smaller sub-set of the population, in fact, they take measures to be sure that doesn't happen.
    5. Thoughtidjoin
      - Thoughtidjoin posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Dried Chickpeas

      Can I wash gluten off dried chickpeas or green lentils when the packet says “may have been cross contaminated?” Has there been any research into this? If so what are the results? If no research has been done why not? I am getting mixed advice from different sources, how serious is this or are the food manufacturer being over cautious? Many tha...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,431
    • Most Online (within 30 mins)
      7,748
    Dave162
    Newest Member
    Dave162
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Scott Adams
      Dried Chickpeas

      By Scott Adams · Posted

      If a package of dried chickpeas or lentils says “may contain” or “may have been cross contaminated,” that usually means they were processed in facilities that also handle wheat, barley, or rye. The concern is not gluten dissolved on the surface like dust that can simply be rinsed away, but small fragments of gluten-containing grains that may be mixed in during harvesting, storage, or packaging. Rinsing and sorting can reduce surface flour and remove visible stray grains, and many people do this successfully, but it does not guarantee that all gluten contamination is eliminated. Some limited testing has shown that naturally gluten-free grains and legumes can contain measurable gluten when cross-contact occurs in shared facilities, which is why manufacturers use precautionary labeling. The seriousness depends on the individual: for someone with celiac disease, even small amounts of gluten can trigger intestinal damage, so choosing certified gluten-free legumes is the safest option. Manufacturers are not necessarily being overly cautious; they are often acknowledging real cross-contact risk in complex agricultural supply chains.
    • knitty kitty
      Dried Chickpeas

      By knitty kitty · Posted

      Welcome,  While picking through chickpeas and lentils I have found little pebbles and on occasion, a kernel or two of wheat.  Farm equipment and transport trucks are used to harvest different crops.  It would be really expensive to have separate trucks and packaging lines for each crop.   I have found sorting or picking through the peas or lentils along with a good rinse sufficient to make them safe for me.  Do remember that lentils and such are high in carbohydrates.  Eating a diet high in carbs can lower thiamine B1.  Good sources of Thiamine and other B vitamins are meats.  Extra thiamine is needed for tissue repair to grow the villi back and recovery from malabsorption.  Low thiamine symptoms (gastric Beriberi) are very similar to symptoms of a glutening.  Try adding thiamine hydrochloride or Benfotiamine and see if you still react to chickpeas and lentils the same way. Supplementing with extra thiamine is safe and nontoxic.   Best wishes.
    • trents
      Dried Chickpeas

      By trents · Posted

      Welcome to the celiac.com community, @Thoughtidjoin! I would think so, yes. But you need to realize that cross contamination studies with lintels have shown the real problem isn't only coming in contact with gluten containing grains in processing but in the actual mixing in of cereal grain seeds in significant quantities with the lentils. I think it was a study done by Gluten Free Watchdog I'm thinking of but they did an actual count of the seeds in a purchased mainline food company bag of lintels and found something like 20% of the content was wheat seeds. So, you'd better do some sorting first.
    • Thoughtidjoin
      Dried Chickpeas

      By Thoughtidjoin · Posted

      Can I wash gluten off dried chickpeas or green lentils when the packet says “may have been cross contaminated?” Has there been any research into this?  If so what are the results? If no research has been done why not? I am getting mixed advice from different sources, how serious is this or are the food manufacturer being over cautious? Many thanks Catherine
    • catnapt
      Collecting all possibly related lab work?

      By catnapt · Posted

      I've got some lab work results going back to 2010, various MRIs and CT scans and ultrasounds. I discovered two things that MIGHT be of interest to the GI doc tell me what you think? one is the results to an abdominal CT scan with contrast in 2013 that includes this:  "there is some thickening seen in the second and third portions of the duodenum"    Since this CT scan was for left lower quad pain, it was not followed up on   Then in May of 2024 I saw a foot specialist for problems with my feet. Some of that pain is due to a very obvious deformity of both of my legs- the right worse than the left. The dr suggested that my symptoms sounded like an auto immune condition (???) and I thought he was nuts but he ordered some lab work- it came back negative except for a weak positive on one test HLA-B27 and there was a follow up test recommended but that was never ordered and this dr gave me a useless Rx for custom insoles which he refused to address - and my calls to his office were never returned.   At that time I was having all over joint pains, plus some numbness in my feet (also stiffness) and some burning pain in my toes- esp the big toe on the right foot (the more deformed side of my body)   The last time I was eating any appreciable amount of gluten containing foods was in the period of Nov 2024 to around sometime in the summer of 2024. I regularly ate a barley soup that I loved and had subs and pizza and toast etc. I was no longer eating wheat pasta, had already switched to brown rice pasta but otherwise I had not yet made a clear connection between what I was calling 'refined grain products' and any symptoms that I had. And the symptoms were vague and could be attributed to other things.   I was referred to a neurologist in late 2023 for symptoms  of confusion/disorientation, that included loss of balance that I attributed, in part, to the inability to feel where my feet were. Some symptoms such as high spikes in blood pressure (some close to 200 over 100! scary stuff) were later determined to be due to covid or long covid (also had loss of sense of smell and taste)    I had periods of dizziness that did NOT include any spinning sensations, it was more of a feeling of lightheadedness as if my mind would go blank- very strange, never really got any answers about that but that eventually went away so not worried about that   WHAT OTHER THINGS from my past records might be good for the GI dr to know? I had my very first Vit D test done in 2023 and it was low at 23, supplements have gotten that up in the range of adequate but values varied up and down... most recent test was Nov 2025 and it was 45ish I think. That's on a min of 5000Ius per day (there are some fortified foods I eat sometimes that have added vit D)   I thought my serum calcium ran on the low side but it turns out that the reference ranges have changed for the labs that I use- one changed their RR back around er, 2014 I think? so I have no clue how to compare the results before and after those changes   calcium has never been below normal and most of my blood work looks "normal" except during illness or other issues like if I'm in afib- blood work looks insane LOL    I don't know what to make of all this but it sure will be nice to get some answers!         
×
×
  • 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.