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. Mari
      - Mari replied to Jmartes71's topic in Related Issues & Disorders
      15

      My only proof

      Years ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came...
    2. Rejoicephd
      - Rejoicephd commented on Jefferson Adams's article in Gluten-Free Cooking
      1

      Your Complete Gluten-Free Thanksgiving Plan: Recipes, Tips & Holiday Favorites

      Wow what a helpful article!! I am just seeing this now but I hosted a small group of family for Thanksgiving at my house this year and I did some of these things- got a butterball gluten-free turkey, got gluten-free stuffing, had a few gluten-free sides, and a gluten-free nothing-Bundt-cake. I had other non gluten-free things there too for others, and I also...
    3. Scott Adams
      0

      Rainforest Cafe Fined After Child's Severe Allergic Reaction: What It Means for Gluten-Free Safety

    4. marion wheaton
      - marion wheaton replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    5. trents
      - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,421
    • Most Online (within 30 mins)
      7,748
    john rands
    Newest Member
    john rands
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • Mari
      My only proof

      By Mari · Posted

      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      Are Lindt chocolate balls gluten free?

      By trents · Posted

      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
×
×
  • 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.