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

Am I Celiac? Ill For Last 7 Months.

ToddZ

Recommended Posts

ToddZ Newbie
ToddZ
Posted

Hello, I am new here and have found this site fascinating. I am a 32 year old drug free and alcohol free, male with no former psychological or gastrointestinal disorders until one day in September of 2007 when my whole world was turned upside down.

For the past 7 months I've been extremely ill and have not been able to hold a job or anything due to a mysterious illness I've been suffering from.

This whole thing started back in September 2007 when I suddenly had a reaction to something I ate. To this day I still do not have a clue what I ate that could have caused this - so I thought I was poisoned.

The reaction was severe and caused extreme neurological symptoms and gastrointestinal problems that were horrible. This resulted me going into the ER twice with 2 separate diagnosis's. The first being acute gastritis that I was told would be gone after a few days and the second being an acute anxiety disorder. I was prescribed Nexium for the gastritis and nothing for my anxiety. I was told to see a psychologist. Which I eventually did.

For months and months I could not work. I suffered from extreme anxiety, tingling feet, tingling hands, strange vision (like I was doped up or something), severe GERD, severe gastritis, and severe lower abdominal burning pain. I also experienced strange auditory problems. I literally thought I was going to die. I could not stop from pacing and was basically freaking out.

Finally, after a few months of eating nothing but Ensure and on steady medicated diet of Nexium, Bentyl, Carafate, DGL Licorice root, and Xanax I literally made preparations for my death but my symptoms suddenly seems to go away and I slowly regained some of my former health back.

Fast forward to late April 2008. I have been eating solid food for the past 2 months with great success. I have been eating very healthy type foods. Crock pot chicken, rice, fish, a lot of canned chicken and rice soup, etc. Nothing heavy or abrasive. All of my previous psychological symptoms I have been experiencing disappered except for slight to moderate tinnitus, some weird minor muscle twitching, but all in all have been feeling very well. I felt so good that maybe I could get away with eating some pizza!! WRONG! That night I knew I made a mistake. I wasn't in pain until the next day.. I felt as if a clothes iron was being pressed onto my stomach from the inside out. I was extremely tired and had the urge to sleep all the time. I went from feeling very well and confident to wanting to curl up in a ball and die the very next day. Frustrated and feeling deathly ill, I took a Nexium, 2 Zantec 150's, 3 teaspoons of Carafate, and 4 DGL pills hoping the burning would go away sooner than later (which it finally did the next day).

I have noticed that certain foods will trigger a reaction - not as severe as the pizza, but will cause distress of some sort. Waffles was another one. I had 4 waffles in one sitting a week before and noticed a burning in my lower intestinal region. It was uncomfortable but tolerable. The burning was on and off but finally went away. I didn't think much of it really until the pizza incident. Sandwiches seem to bother me as well and cause me to be REALLY tired. I used to think most of the smaller reactions were due to me healing from whatever happened to me in September. The reaction to the pizza though is different. I strongly feel I am allergic because I don't understand how one can go from feeling very well to completely deathly ill in a matter of a day. This is beyond disturbing to me. Especially when the day of hell ended so unbruptly. The following "day of hell" I ate a chicken and mash potatoe dinner and I was totally fine with no burning or nothing. Usually if this was gastritis (one would think) it would last longer and could not eat anything without it getting irritated!

I'm going back on my rice and chicken diet but I would really like to know anybody's thoughts and/or anybody has experienced something similar? I'm planning on going 100% gluten free and see what happens. Hopefully there is a reason for what is happening to me. But so far I strongly believe I am an undiagnosed celiac.

Thanks for reading!

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

Celiac.com Sponsor (A8-M):


tom Contributor
tom
Posted

Wow! The speed of onset in Sep'07 is unusual, but I've learned not to put anything past Celiac.

The other incidents sure seem to point to at least a wheat allergy - or maybe gluten intolerance, or celiac disease.

Best of luck figuring it out & beware the hidden gluten. My toothpaste was the last thing I found glutening me.

Lisa Mentor
Lisa
Posted

I have had diagnosed IBS for most of my life, and seemed to function with that fact. One day in July kept me housebound and close to the bathroom for two months. My Celiac was triggered by stress and I can pin point THE day.

If you wish to pursue testing, this is the test that needs to be ordered by your doctor:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted
My toothpaste was the last thing I found glutening me.

Tom, what toothpaste has gluten in it??? :blink: (I've never even thought of toothpaste! Oh, no....)

ToddZ Newbie
ToddZ
Posted
  • Author
Wow! The speed of onset in Sep'07 is unusual, but I've learned not to put anything past Celiac.

The other incidents sure seem to point to at least a wheat allergy - or maybe gluten intolerance, or celiac disease.

Best of luck figuring it out & beware the hidden gluten. My toothpaste was the last thing I found glutening me.

For years before this I did experience debilitating migraines that I learned to deal with. The were manageable but very unpredictable. I always had a massive bottle of Excedrin on hand and it did the trick if I caught it early enough. I also had chronic fatigue and required a daily power nap at lunch time to get through the day along with some coffee. I attributed these two symptoms to just being overworked etc. I am beginning to think these were the beginning stages of whatever is going on with me now. Interestingly, the migraines have totally stopped but the fatigue continues. I learned to deal (or rather ignore) the migraines and fatigue. Now I need to start learning and figure this out or I fear I will not live very long if I continue to ignore my body. I don't think I have a choice in the matter!

I will definitely change my toothpaste as well. What type of toothpaste do you use? I will be sure to get some!

I also get into trouble because I get bored of eating the handful of foods that I find safe. How many times can you eat chicken and mash potatoes? Or crock pot chicken, etc.. Or rotisserie chicken etc.. I need to order some food off this site for sure and start experimenting with it. Once I divert from my safe foods, I start reverting back. It's like a enter a minefield once I start experimenting with other foods and I get sick really fast if I eat the wrong thing. It's like the "sick" switch is flipped or someone with a voodoo doll started to stab me with a knife!

I never suspected celiac until the pizza incident because this time it was so obvious. Hopefully I am on the right track though... I'll be sure to discuss this with my doctor because I honestly think he's under the impression I am on the rebound when in reality I am still very much still in the process of figuring this thing out. He doesn't understand I eat a very restricted diet at this point.

Thanks for toothpaste tip and please let me know.

Todd

ToddZ Newbie
ToddZ
Posted
  • Author
I have had diagnosed IBS for most of my life, and seemed to function with that fact. One day in July kept me housebound and close to the bathroom for two months. My Celiac was triggered by stress and I can pin point THE day.

If you wish to pursue testing, this is the test that needs to be ordered by your doctor:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

Thank you very much for this info. I will definitely get tested for this. With any luck, I will have found out what is wrong with me. It seems I have had every test known to man but I know for a fact that I haven't had these tests!

tom Contributor
tom
Posted
Tom, what toothpaste has gluten in it??? :blink: (I've never even thought of toothpaste! Oh, no....)

I'd like to think they've changed it by now, but in '03 Aim had gluten.

I use a Tom's of Maine now, but that's more because of the sweeteners in most brands.

I think most brands are gluten-free, but I really haven't looked in years.

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.

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

      Persistent isolated high DGP-IGG in child despite gluten-free diet

      Welcome to the celiac.com community, @melthebell! I certainly would have a biopsy repeated as it has been 5 years since the first one. You mentioned he was scheduled for an endoscopy but make sure a biopsy is also done. It's possible he, like you are, is a "silent" celiac where the damage to the intestinal mucosa happens very slowly and can take years...
    2. melthebell
      - melthebell posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Persistent isolated high DGP-IGG in child despite gluten-free diet

      Hello community; it's nice to have found you. I am a 42 year old biopsy confirmed celiac. I have had it since I was 18. Well managed on a gluten free diet. No idea if I have the gene (presume I do) as never tested. Diagnosed as was anaemic and had a high celiac market (can't recall which), and a positive biopsy. Asymptomatic. Given this, I regularly...
    3. trents
      - trents commented on Scott Adams's article in Winter 2026 Issue
      4

      Why Celiac Diagnosis Still Takes Years—and How to Change That

      @par18, I don't totally disagree with what you say in theory. But like many things in life, one size doesn't fit all. While a formal diagnosis of celiac disease or NCGS is certainly not essential since, in the big picture of things, eliminating gluten is the antidote to either, there are some other considerations that give importance to seeking a formal diagnosis...
    4. Jmartes71
      - Jmartes71 replied to Known1's topic in Gluten-Free Foods, Products, Shopping & Medications
      4

      What would you do - neighbor brought gluten-free pizza from Papa Murphy's

      Domino's and Mountain Mike also has glutenfree pizza.However the issue is the cross contamination. Not worth a few minutes of yum yums i n the taste buds with a painful explosion later.
    5. par18
      - par18 commented on Scott Adams's article in Winter 2026 Issue
      4

      Why Celiac Diagnosis Still Takes Years—and How to Change That

      Withholding the treatment (strict gluten-free diet) until the very end to me is the biggest obstacle to getting more people "identified" with gluten intolerance/Celiac. The strict gluten-free diet in my opinion is both the effective treatment and also a valuable diagnostic tool. My personal advice would be to go on a properly administered gluten-free diet...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,497
    • Most Online (within 30 mins)
      7,748
    Jennifer And
    Newest Member
    Jennifer And
    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

    • trents
      Persistent isolated high DGP-IGG in child despite gluten-free diet

      By trents · Posted

      Welcome to the celiac.com community, @melthebell! I certainly would have a biopsy repeated as it has been 5 years since the first one. You mentioned he was scheduled for an endoscopy but make sure a biopsy is also done. It's possible he, like you are, is a "silent" celiac where the damage to the intestinal mucosa happens very slowly and can take years to manifest to the point of being detectable and where symptoms are minimal or absent. At 10 years old, his immune system may not be mature enough het to trigger the usual IGA responses that the IGA celiac tests are designed to detect.  I would also have genetic testing done to confirm that he has or doesn't have the potential to develop celiac disease. The genetic profile can also offer insight into the type of celiac disease a person will develop if they ever convert from latent to active. Take a look at table 2 under the section "Types of Celiac Disease" in the article found in this link: https://pmc.ncbi.nlm.nih.gov/articles/PMC9980758/  Genetic testing is available from 3rd party labs. I think you just have to send in a cheek swab sample.
    • melthebell
      Persistent isolated high DGP-IGG in child despite gluten-free diet

      By melthebell · Posted

      Hello community; it's nice to have found you. I am a 42 year old biopsy confirmed celiac. I have had it since I was 18. Well managed on a gluten free diet. No idea if I have the gene (presume I do) as never tested. Diagnosed as was anaemic and had a high celiac market (can't recall which), and a positive biopsy. Asymptomatic. Given this, I regularly test my two children. My eldest is the child in question. First tested at age 5 due to slight anaemia. Everything negative except for a slightly high DGP IGG (slightly elevated at 25). Not IGA deficient. Did a biopsy with a pediatric gastro, was negative. Next test at age 8. Everything once again negative, high DGP IGG at 116 U/ml this time. Living in a country now with no celiac knowledge so decided to whack him on a gluten-free diet and see how he goes. Next test at age 9 after a year on gluten-free diet. Everything once again negative, high DGP IGG at 174 U/ml this time! On a gluten-free diet. Final test was a week ago at age 10, on continued gluten-free diet. Once again a positive DGP IGG, this time over 250 U/ml. On a gluten-free diet. what the heck is going on with my kid? We have seen a pediatric gastro via telehealth, who was equally puzzled and suggested doing a gluten challenge and an endoscopy, which we have schedule for end of April. Kid is otherwise fine. Energetic and growing well. No significant gastrointestinal symptoms. Has anyone encountered something like this before?
    • Jmartes71
      What would you do - neighbor brought gluten-free pizza from Papa Murphy's

      By Jmartes71 · Posted

      Domino's and Mountain Mike also has glutenfree pizza.However the issue is the cross contamination. Not worth a few minutes of yum yums i n the taste buds with a painful explosion later.
    • Scott Adams
      Reverse Osmosis (RO) Water

      By Scott Adams · Posted

      I don't recall seeing "many people here recommending RO water," but reverse osmosis (RO) water is water that has been purified by forcing it through a very fine membrane that removes dissolved salts, heavy metals, fluoride, nitrates, PFAS, and many other contaminants. It is one of the most thorough household filtration methods available and can be especially beneficial in areas with well water or known contamination concerns. While RO systems also remove beneficial minerals like calcium and magnesium and may produce slightly “flat”-tasting water, most dietary minerals come from food rather than drinking water, so this is not usually a health concern for most people. Overall, RO water is very clean and safe to drink, and it can be a smart option where water quality is questionable, though it may not be necessary in areas with well-tested municipal water.
    • Scott Adams
      What would you do - neighbor brought gluten-free pizza from Papa Murphy's

      By Scott Adams · Posted

      With the wide availability of frozen prepared gluten-free pizzas, for example DiGiorno's, it's probably best to avoid the risk of eating pizza in restaurants that also make regular pizza.
×
×
  • 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.