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 Do You Know? I'm Frustrated

Aphreal

By Aphreal
in Coping with Celiac Disease

Recommended Posts

Aphreal Contributor
Aphreal
Posted

I am getting upset. I have had D and gas for 2 days now. I THINK it may have been from eating some corn tortilla chips fried in oil used for flour so CC. I was told they were gluten-free then learned I was supposed to specify gluten-free baked and not corn fried. In my defense the manager did tell me they were gluten-free! Liar. I was fine until this particular dinner Sat but about an hour after, I got that tell tale sign and here it is Monday. I still have it! So I get confused if this is my body reacting to that or something else I ate today or yesterday so now I am over analizing everything! Is this just a trial and error, do you ever stop overreading over analizing over worrying about everything. I am so fed up having to run to the bathroom in public during a great day out with a friend or something. *sigh*

Is this normal? Is it really REALLY gluten? I am starting to wonder. I can't seem to get it right and trust me, I take this very seriously, I read every single word on every label, I don't cheat ever! I don't have the *well just a little bit* mentality because I want to be better. Thankfully I am still migraine free and sleeping fine.

I am about in tears. I was doing better and now it seems cc oil threw me back DAYS!!!

sorry I needed to get that out.

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

Celiac.com Sponsor (A8-M):


curiousgirl Contributor
curiousgirl
Posted

I am getting upset. I have had D and gas for 2 days now. I THINK it may have been from eating some corn tortilla chips fried in oil used for flour so CC. I was told they were gluten-free then learned I was supposed to specify gluten-free baked and not corn fried. In my defense the manager did tell me they were gluten-free! Liar. I was fine until this particular dinner Sat but about an hour after, I got that tell tale sign and here it is Monday. I still have it! So I get confused if this is my body reacting to that or something else I ate today or yesterday so now I am over analizing everything! Is this just a trial and error, do you ever stop overreading over analizing over worrying about everything. I am so fed up having to run to the bathroom in public during a great day out with a friend or something. *sigh*

Is this normal? Is it really REALLY gluten? I am starting to wonder. I can't seem to get it right and trust me, I take this very seriously, I read every single word on every label, I don't cheat ever! I don't have the *well just a little bit* mentality because I want to be better. Thankfully I am still migraine free and sleeping fine.

I am about in tears. I was doing better and now it seems cc oil threw me back DAYS!!!

sorry I needed to get that out.

I feel the same way!

Seems the more I don't eat gluten, the more "allergies" I get! For instance, I just had a few canned oysters from Trader Joe's. The ingredients are just oysters and olive oil. But, now I'm feeling a burning in my stomach that I haven't felt all day.

I'm off coffee as of this morning...my last cup a couple of hours ago with no problem. And, my first one this morning at 8:00....no problem!

So waaaassssuuuup??????

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

It takes me almost a week to get over a glutening. I think the shortest has been 4 days. I think it will take a while to learn what is "safe" when trying new foods. Stick with food you know you don't react to until you get over the glutening. Don't try anything new while you still feel bad.

Sorry your still suffering.

rdunbar Explorer
rdunbar
Posted

yes, it is so frustrating I know. i got glutened last week, after doing so well after shifting into ultra-hardcore, "i'm only eating at home, meat, fruit, veggies, and nothing processed/packaged" mode, about 5-6 months ago. I had a chai that they make from scratch in the kitchen at the health food store which also has a pizza oven! to make it more frustrating it was so unnessesary, and I knew better, I geuss i just got off of my guard and figured i could 'reward' myself, haa!

it's wierd how you forget how much better you were doing before, and just focus on how bad you feel now, and wonder if you are going to feel good again, ever. the ugly irritability and anxiety that resurfaces sure does'nt to help to put into perspective at the time, at least for me.

almost a week later, I'm feeling a lot better, and only have a little achiness, tingling, and horrible mood. no D this time, but I have gotten it badly in the past, before I quit dairy.

also, you might want to consider trying eating corn-free, too; from what i've heard, corn is all cross-contaminated, harvested with the same machinery, and stored in the same facilities as wheat.

Danyelle Demchock Newbie
Danyelle Demchock
Posted

Hello Aphreal!

I have compassion because I was there too and used to call my holistic doctor and sit on the phone with the assistant for hours because I was so frustrated!

Yes, the same thing used to happen to me when I ate any type of grains 4 years ago. Still to this day I don't do well on corn or any type of grains. I have a lot of gas when I eat corn. Corn is a very highly reactive food for many of my clients as well. I often, recommend they avoid corn as well if their symptoms include bloating and gas.

Do you happen to know if you have leaky gut syndrome? Because of leaky gut (undigested food particles leak in to the blood stream cause and autoimmune response) and the damage gluten has done to the intestinal wall, people who are gluten intolerant also find themselves reactive to other "common" foods such as dairy, corn, rice, soy, nuts.

With Compassion,

Danyelle Demchock

Aphreal Contributor
Aphreal
Posted
  • Author

You guys really are the best. Danyelle, the evening this *episode* occured, I ate a LOT of corn. baked corn chips (about 3 tortillas) Plus a flat corn with queso and 2 corn shell tacos. I do eat corn products without issue but I think maybe I overdid it that night. I hadn't had tex mex in a long time and I was tickled they had a gluten-free menu.

One more thing to watch out for I *spose. One thing that would devestate me is if I had to go dairy free. I think I am ok on that front. I eat yogurt every day. Milk and some cheese too.

I hate that any of you are suffering reactions too, On the same token, I am glad I am not alone and I hope one day when I get on the other side of this, I can help people too.

Tiff

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. Known1
      - Known1 replied to Known1's topic in Introduce Yourself / Share Stuff
      10

      Diagnosed Marsh stage 3C in January 2026

      It looks like she has a couple of books that share "The Paleo Approach" in the title. I ordered this one, as the other is a cookbook. The Paleo Approach: Reverse Autoimmune Disease and Heal Your Body Thanks again for the info.
    2. knitty kitty
      - knitty kitty replied to Known1's topic in Introduce Yourself / Share Stuff
      10

      Diagnosed Marsh stage 3C in January 2026

      @Known1, I understand you have had your B12, Folate B 9, and Vitamin D level checked. However there are other B vitamins that are not routinely checked because blood tests for other B vitamins are terribly unreliable, expensive, or cumbersome to use frequently. Results can take a long time to get back, delaying proper treatment and risking permanent...
    3. Known1
      - Known1 replied to oceangirl's topic in Gluten-Free Foods, Products, Shopping & Medications
      21

      Lubriderm-gluten-free?

      Thanks, I had already sent you a direct message regarding bananas. Maybe just reply to that?
    4. knitty kitty
      - knitty kitty replied to oceangirl's topic in Gluten-Free Foods, Products, Shopping & Medications
      21

      Lubriderm-gluten-free?

      @Known1, I'm sure you can find a shelter or community service group that would appreciate your lotion donation. I've replied to the topic of your bloodwork as it relates to vitamins in your "Introduce Yourself" post so as not to high jack this thread. Thanks
    5. Scott Adams
      - Scott Adams replied to Olenaideole's topic in Gluten-Free Foods, Products, Shopping & Medications
      18

      What apps or tech tools help you manage celiac disease?

      The comments requested are very limited in scope, and I don't think this shotgun approach would be helpful, but that is just my 2 cents, for what it's worth.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,423
    • Most Online (within 30 mins)
      7,748
    Jennie s
    Newest Member
    Jennie s
    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

    • Known1
      Diagnosed Marsh stage 3C in January 2026

      By Known1 · Posted

      It looks like she has a couple of books that share "The Paleo Approach" in the title.  I ordered this one, as the other is a cookbook. The Paleo Approach: Reverse Autoimmune Disease and Heal Your Body Thanks again for the info.
    • knitty kitty
      Diagnosed Marsh stage 3C in January 2026

      By knitty kitty · Posted

      @Known1,  I understand you have had your B12, Folate B 9, and Vitamin D level checked.  However there are other B vitamins that are not routinely checked because blood tests for other B vitamins are terribly unreliable, expensive, or cumbersome to use frequently.  Results can take a long time to get back, delaying proper treatment and risking permanent damage.  It's easiest to supplement and look for health improvement. Blood tests can reflect how much of a certain vitamin was consumed in the past twenty-four to forty-eight hours.  Vitamins released by digestion is absorbed by villi, anemone like projections that increase the surface area of the small intestine, and then pass into the blood stream for distribution around the body.  A Marsh score of 3C indicates severe damage to the villi lining the small intestine.  Absorption of nutrients is definitely affected.   Blood tests don't reflect the amount of a vitamin  that is stored inside cells before being used.  You can have "normal" blood levels but have deficiency within cells of organs and tissues.  Tissues and organs will relinquish their stored vitamins into the blood stream in order to keep the brain and heart working while tissues and organs are depleted.   It's possible to have a localized deficiency of Thiamine B1 in different organs which cause the organ to malfunction.  Gastrointestinal Beriberi is caused by Thiamine deficiency in the gastrointestinal tract.  Gallbladder dysfunction, thyroid dysfunction, heart attack, and cognitive dysfunction can be caused by Thiamine deficiency.   Most of the B vitamins cannot be stored for very long, maybe six weeks. B12 can be stored for as long as a year in the liver.  So having "normal" B 12 levels does not mean all your other vitamins are "normal" as well.   Thiamine can be stored for eighteen days, however  Thiamine can be depleted within three days.  We have a greater metabolic demand for Thiamine when we're physically ill, emotionally stressed or are physically active (work out regularly) or work outdoors (or ride bikes).  Because most B vitamins can become low within a month or two under the best of circumstances, many newly diagnosed feel great on the gluten free diet at first.  After that, they seem to start going downhill.   The nutritional deficits start making themselves known.   Keep in mind that processed gluten free foods are not enriched nor fortified with vitamins and minerals to replace nutrients lost in processing like their gluten containing counterparts are.  You have to replace them yourself by taking supplements at least until the villi regrow and absorption improves. The eight B vitamins are water soluble.  They are easily lost if one has diarrhea or constipation or in those with a high Marsh score.  Because they are water soluble, the body can easily excrete excess through the kidneys.  Recommended Daily Amounts are based on experiments done on humans to find the minimum dose required to prevent disease.  Levels for optimal health are much higher.   Doctors are trained in medical learning institutions which are funded by pharmaceutical companies.  Requirements for nutritional education have been reduced to twenty class hours over the course of the seven years of medical school.   Three-day weekend seminars earn ten hours.  Vitamins cannot be patented as they are natural substances, so there is more profit for doctors to prescribe pharmaceuticals.  They are taught to cover symptoms with pharmaceutical bandaids.  They may not look for what caused symptoms to appear in the first place.   Doctors are taught nutritional deficiencies don't occur except in impoverished or drought stricken countries.  This is not accurate.  Nutritional deficiencies can occur if you eat a High Carbohydrate Diet, eat the Standard American Diet, and if you have malabsorption problems as occur with Celiac Disease.   You can check out my blog for the challenges I faced due to vitamin deficiencies that went unrecognized by doctors.   Talk to your doctor and new dietician about supplementing with vitamins, minerals and essential nutrients while your villi are healing.  My favorite Celiac book is The Paleo Approach by Dr. Sarah Ballantyne.  She explains the AutoImmune Protocol Diet.  It has been shown to reduce inflammation and promote healing in the gastrointestinal tract. Best wishes!
    • Known1
      Lubriderm-gluten-free?

      By Known1 · Posted

      Thanks, I had already sent you a direct message regarding bananas.  Maybe just reply to that?
    • knitty kitty
      Lubriderm-gluten-free?

      By knitty kitty · Posted

      @Known1, I'm sure you can find a shelter or community service group that would appreciate your lotion donation.   I've replied to the topic of your bloodwork as it relates to vitamins in your "Introduce Yourself" post so as not to high jack this thread.   Thanks
    • Scott Adams
      What apps or tech tools help you manage celiac disease?

      By Scott Adams · Posted

      The comments requested are very limited in scope, and I don't think this shotgun approach would be helpful, but that is just my 2 cents, for what it's worth.
×
×
  • 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.