Jump to content
  • 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):

Still Confused Hope Someone Can Answer This


Jinkomedy

Recommended Posts

Jinkomedy Newbie

ok ive read couple books already and googled about celiac desease.

still confused tho.

so if i dont have celiac can i still be gluten intolarance or sensitive?

Or is being gluten intolarence another word for having celiac desease?

MOST IMPORTANT Question.

if gluten damages the small intestine (villi) for celiac desease positive people, does it do the same damage to the (villi) if i were just gluten intolarence or gluten sensitive?

ive been trying for almost 3 months eating only gluten free foods. i really cant take it any more. i cant eat with my friends, no one really understands, i cant go on trips,

i cant just go thru a drive thru when hungry.Gluten free food is expensive. now im broke. pretty much life sucks being on a gluten deit. It caused alot of stress thinking what foods contain gluten or is it contaminated. i bought all new utencils, toaster, but now im getting tired. im not really feeling any better. Honestly i pray to god why. and cry once a week.


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



Celiac.com Sponsor (A8-M):



dilettantesteph Collaborator

To save on expenses, eat fewer prepared foods. Potatoes, carrots, pork, and rice are pretty cheap.

Cattknap Rookie

First of all - celiac disease is different than a wheat or gluten allergy although they do have some things in common.

Here is a link that might help you unerstand the difference:

Open Original Shared Link

First, you need to be tested for celiac (blood test) to determine if you have the disease as it is significantly more serious to have celiac than a wheat allergy. If you do not have celiac, go to an allergist and get tested to see which grains you are allergic to.

Stop buying so many "gluten free" products. Just eat whole, healthy foods. I buy gluten free pizza dough mix, pancake mix and Amy's gluten-free frozen dinners to keep on hand (Walmart carries these and they are about $2 cheaper per dinner than Whole Foods). I keep a loaf of gluten free bread in the freezer. I buy gluten-free oats (Walmart in their gluten-free section)....that is about the extent of the gluten free products that I buy.

As far as eating out and traveling - it can be done. More and more restaurants are becoming aware of and catering to those that can't tolerate gluten. Choose restaurants wisely - if you know you are going out to dinner with friends or are eating on the road, do research ahead of time. Let your computer search engine find gluten free restaurants/bakeries in your area or areas where you are traveling - they are becoming more and more frequent. I have found gluten-free cafes and restaurants in many cities across the U.S.

When we go out with friends, I call ahead to the restaurant and speak to the manager and ask about what is on the menu that I can eat. Many restaurants will glady put a meal together for you that does not containt gluten. I always explain briefly about the cross-contamination problem. Many restaurants will work with you - some restaurants are aware of cross-contamination. Some restaurants are clueless.

I have also eaten before going out and then just had a dinner salad with oil and vinegar dressing...just so I can see my friends, eat something and stay gluten free.

As another poster noted - eat whole foods and try to skip foods with sauces, dressings and soy sauce.

When we are traveling, I stop by Whole Foods and buy gluten free products - I'll carry a small disposable cooler in the car and fill it with Greek yogurt or low fat cheese sticks, fresh fruit, hard-boiled eggs, gluten free muffins, carrot and celery sticks...these are great lunch/breakfast items.

As far as fast food - I will occasionally go to Wendy's and buy a plain baked potato and pour their low-fat chili over it - it is delicious and very filling. I don't do a lot of fast-food though.

Not being able to eat gluten should in no way ruin your life. Stop whining! Your friends don't need to "understand" about your intolerance to wheat. Be proactive in planning where you can eat and what you can eat and working with your doctor to determine exactly what allergies/disease that you have.

Lastly, don't make your wheat intolerance the center of every conversation or thought. Really, no one wants to hear it. Deal with it intelligently and by actively seeking information and resources. Right now you are operating on assumptions - see your doctor!

kwylee Apprentice

so if i dont have celiac can i still be gluten intolarance or sensitive?

Or is being gluten intolarence another word for having celiac desease?

MOST IMPORTANT Question.

if gluten damages the small intestine (villi) for celiac desease positive people, does it do the same damage to the (villi) if i were just gluten intolarence or gluten sensitive?

ive been trying for almost 3 months eating only gluten free foods. i really cant take it any more. i cant eat with my friends, no one really understands, i cant go on trips,

i cant just go thru a drive thru when hungry.Gluten free food is expensive. now im broke. pretty much life sucks being on a gluten deit. It caused alot of stress thinking what foods contain gluten or is it contaminated. i bought all new utencils, toaster, but now im getting tired. im not really feeling any better. Honestly i pray to god why. and cry once a week.

I know it can be frustrating at first. But I think you're on the right track.

I am Non-Celiac Gluten Intolerant. My intestines are perfectly healthy and have never shown any sign of damage. But my body produces antibodies to gluten, which means that gluten is a foreign substance in my system. I was always a big gluten eater until I was in my 40's, when I finally started to show distinct signs of neurological distress, dizziness, brain fog, blurred vision. I'd have some intestinal issues at times but they were minor and sporadic and I never made a connection.

Here's the short of it: Celiac or not, and whatever your symptoms, if your body is intolerant to gluten, it will wage a constant battle with your system if you continue to eat it, and you CAN'T WIN unless you remove gluten. I walked around for years feeling ho-hum, not realizing that my body was at war, 24/7/365. This causes inflammation, which is probably at the root of most diseases. Gluten was slowly killing me. Now in my 50's I feel better than I did at 20, because a little over a year ago I made the simple choice to completely remove the "enemy" from my system.

If you've removed all traces of gluten AND you are sure you are not cross contaminating things, then I'd look to additional intolerances, dairy and soy come to mind. It's okay to feel sorry for yourself for awhile, engage a full-on pity party at first, as long as you are vigilant. And when you start to see changes in the way you feel and think, you'll know why it's important for you to do it.

This forum got me through the process. There are so many people here who know how you feel and aren't stingy about sharing their spot-on experiences. Let everyone here help you.

pain*in*my*gut Apprentice

I know it can be frustrating at first. But I think you're on the right track.

I am Non-Celiac Gluten Intolerant. My intestines are perfectly healthy and have never shown any sign of damage. But my body produces antibodies to gluten, which means that gluten is a foreign substance in my system. I was always a big gluten eater until I was in my 40's, when I finally started to show distinct signs of neurological distress, dizziness, brain fog, blurred vision. I'd have some intestinal issues at times but they were minor and sporadic and I never made a connection.

Here's the short of it: Celiac or not, and whatever your symptoms, if your body is intolerant to gluten, it will wage a constant battle with your system if you continue to eat it, and you CAN'T WIN unless you remove gluten. I walked around for years feeling ho-hum, not realizing that my body was at war, 24/7/365. This causes inflammation, which is probably at the root of most diseases. Gluten was slowly killing me. Now in my 50's I feel better than I did at 20, because a little over a year ago I made the simple choice to completely remove the "enemy" from my system.

If you've removed all traces of gluten AND you are sure you are not cross contaminating things, then I'd look to additional intolerances, dairy and soy come to mind. It's okay to feel sorry for yourself for awhile, engage a full-on pity party at first, as long as you are vigilant. And when you start to see changes in the way you feel and think, you'll know why it's important for you to do it.

This forum got me through the process. There are so many people here who know how you feel and aren't stingy about sharing their spot-on experiences. Let everyone here help you.

K-Wylee...thanks for posting this. ;) I have been trying to wrap my head around Celiac vs. non-Celiac gluten intolerance. This sums it up perfectly!

OP...you don't say if you have been tested yet. That could shed some light on your situation.

StephanieL Enthusiast
if you have the disease as it is significantly more serious to have celiac than a wheat allergy.

I am sorry but this isn't exactly true. You can die from an anaphylactic reaction to wheat which is MUCH more serious short term than the long term issues one faces with Celiac. While they are both very serious, to say on is more serious than the other is really a non-issue. Both of these people would need to avoid wheat or face real problems. One is more immediate but they are both very serious.

Lori2 Contributor

There was a study published in March on Celiac and Gluten Sensitivity


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



Celiac.com Sponsor (A8-M):



Archived

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

  • 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. - trents replied to ThomasA55's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Iron loss and potential celiac.

    2. - Joseph01 replied to bethmon's topic in Gluten-Free Foods, Products, Shopping & Medications
      14

      We Keep Getting Glutened With Vegetable Oil

    3. - ThomasA55 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Iron loss and potential celiac.

    4. - Aretaeus Cappadocia replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Edy's and Dreyer's ice cream

    5. - knitty kitty replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Edy's and Dreyer's ice cream

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      134,086
    • Most Online (within 30 mins)
      10,442

    Joseph01
    Newest Member
    Joseph01
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • trents
      Welcome to the celiac.com community, @ThomasA55! Before I give my opinion on your question about whether or not you should undergo a gluten challenge, I would like to know how you react when you get a good dose of gluten? Are you largely asymptomatic or do you experience significant illness such as nausea and diarrhea? You mentioned intermittent joint pain before you began experimenting with a low gluten diet. Anything else?
    • Joseph01
      This is way past due for your post.  I have Celiac and have been recovering for more than a year.  Doing well.  Used Essential oil to day to fry some chicken.  Read the label all good.  Then ate some chicken.  Here comes the gluten reaction.  I haven't had a gluten reaction since year.  I am angry.   I have been so careful with this crap and don't wan't any set backs!!!!! Good luck to you with your post.   Celiac is HELL!
    • ThomasA55
      Hey everyone. I'm a young adult who had very high iron in 2024. 64% saturation 160 ferritin. In 2025 I had far lower iron. 26% saturation and 130 ferritin. I know this is still in range but it seems to be a large drop. That combined with the fact that I developed some intermittent joint pain between the two years makes me wonder if I could be celiac. My dietary intake of iron was pretty steady (mostly in the form of red meat). I did carnivore (therby eliminating gluten) for a bit after the second test and felt improvements in my joints and digestion. I still consume gluten occasionally socially, for religious reasons, and through cross contamination/food sharing. For these reasons, I would need to know if I had it, because although my lifestyle is low gluten its not at the strict level it should be if it turned out I was celiac. I will get a gene test first and hope I don't have DQ2.5,DQ2.2, or DQ8, but if I had any combination of those do you guys think I need proper screening through a gluten challenge / blood test? Other context. From 2024-2025, my b12 stayed about the same in the mid 600s folate went up slightly, but I heard it takes longer for celiac to affect the absorption of these. ANA negative, CRP low, ESR low.  I don't know how much noise exists around the saturation and ferritin, but it caught my eye and Celiac seemed like a possibility. I'm under no illusion that it is probable that I have celiac, only that it may be worth screening given my overall profile.   
    • Aretaeus Cappadocia
      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
×
×
  • Create New...