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

A Week-long K.o.?


PacMan

Recommended Posts

PacMan Newbie

Hi everyone,

I've read many personal accounts of celiac on here, and I think this website is GREAT! I wanted to see, though, if someone has had an experience similar to mine. I will be getting endoscoped and my small intestine biopsied this week for a definitive answer regarding celiac, but I still wanted to put this out there...

Beginning earlier this year, I would get week-long bouts of nausea and extreme fatigue that would last a week. I would wake up in the morning and immediately have to vomit, and I would be "out" for most of the day. I could easily sleep 12-18 hours per day. I wouldn't want to eat, and I'd barely take in 500-700 calories a day. Eating was a struggle--and that alone was definitely not "in-character" for me. Like I said, this would usually last 7-10 days, and then I would slowly emerge out of it. Additionally, these episodes would happen at least once a month, and have been since the beginning of 2009. Needless to say, they wreaked havoc on my professional and personal life. Mornings were always the most difficult, and by the end of the day, I could eat something (like a peanut butter/jelly sandwich or cookies...they seemed the only appetizing things at the time).

Initially, I just thought I was depressed, going crazy, etc., but after visiting an endocrinologist, my Gliadin-IgG test came back with a reading of 15.5 u/mL. However, my ferritin levels were also very high (330+), and my doctor is testing me for hemochromatosis.

I always had a "nervous stomach," ever since I was in middle school. Going to the restroom upwards of 5-10 times a day on a consistent basis just became a fact of life.

Even though I may not have celiac disease, does the Gliadin-IgG test alone indicate an intolerance to gluten? Is it possible to be gluten-intolerant and also have hemochromatosis? The GI doctor I'm seeing said she would expect me to be anemic rather than have an elevated iron level, but she wouldn't tell me if the two could be co-morbid.

Does any of this sound familiar? Does anyone have a similar experience?

I'm planning on going gluten-free once I have my endoscopy. The doctor has had me eating as much gluten as possible for the past 10 days, and yesterday, I had another (albeit, less intense) episode of nausea and sleep. Today, I'm feeling better, but that seems to be the story of my life the last few months--sick, feeling like death warmed over, and then a period of time of feeling "normal."

Any input would be appreciated! Thank you!


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



Celiac.com Sponsor (A8-M):



runningcrazy Contributor

I am having stomach issues as well, but not as severe as you. I am waiting for an accurate answer to my problems I've been having for a long long time.

Even if you have everything negative for testing, why not try the diet? What could it hurt?

If you find you feel better it may be intolerance, not celiacs. If you feel better you may decide to stick to it.

The Fluffy Assassin Enthusiast
Hi everyone,

I've read many personal accounts of celiac on here, and I think this website is GREAT! I wanted to see, though, if someone has had an experience similar to mine. I will be getting endoscoped and my small intestine biopsied this week for a definitive answer regarding celiac, but I still wanted to put this out there...

Beginning earlier this year, I would get week-long bouts of nausea and extreme fatigue that would last a week. I would wake up in the morning and immediately have to vomit, and I would be "out" for most of the day. I could easily sleep 12-18 hours per day. I wouldn't want to eat, and I'd barely take in 500-700 calories a day. Eating was a struggle--and that alone was definitely not "in-character" for me. Like I said, this would usually last 7-10 days, and then I would slowly emerge out of it. Additionally, these episodes would happen at least once a month, and have been since the beginning of 2009. Needless to say, they wreaked havoc on my professional and personal life. Mornings were always the most difficult, and by the end of the day, I could eat something (like a peanut butter/jelly sandwich or cookies...they seemed the only appetizing things at the time).

Initially, I just thought I was depressed, going crazy, etc., but after visiting an endocrinologist, my Gliadin-IgG test came back with a reading of 15.5 u/mL. However, my ferritin levels were also very high (330+), and my doctor is testing me for hemochromatosis...

As you've probably seen already, there's almost an infinite variety of symptoms associated with celiac disease. I haven't run across yours, but I'm just another yoyo on the Internet; my knowledge is limited. In case you haven't seen it, here's the Mayo Clinic's take on high ferritin levels: Open Original Shared Link and hemochromatosis: Open Original Shared Link One possible cause for high ferritin levels that they mention is rheumatoid arthritis. Of course, you'd know if you had that, and presumably would have mentioned it if you did, but it is something that is often associated with celiac disease.

Good luck, welcome to the board, I hope you find your answer soon, and I'm very sorry that you're going through this.

PacMan Newbie

Thank you Fluffy Assassin!

I'm finding out much of what you said to be true--things like celiac can cause a variety of symptoms. I had my endoscopy and biopsy yesterday, so I'll have to wait a week for the biopsy results to come back, but the doctor said my duodenum didn't look like it had the "typical" visual symptoms of celiac. We'll see, though. Good news is that I do not have hemochromatosis...evidently, I have only one of the two necessary genes for the disease, so even though not having that diagnosis is good news, it still doesn't answer why my iron is so high. I spoke with a friend today, and he said that many of these autoimmune diseases, and even food allergies, wreak havoc on our systems, and cause weird things like strange blood readings.

It'd be nice to get some solid answers though! :-)

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. - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      21

      My journey is it gluten or fiber?

    2. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      21

      My journey is it gluten or fiber?

    3. - Oliverg posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Glutened

    4. - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      21

      My journey is it gluten or fiber?

    5. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      21

      My journey is it gluten or fiber?

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

    • Total Members
      132,768
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • knitty kitty
      I take both Benfotiamine and TTFD.   You might want to start with the Benfotiamine for a few days and then add in the TTFD.   You can look for NeuroMag (Magnesium Threonate).  A magnesium glycinate is fine, too.  Doctor's Best is a good brand.  Don't take more than 300mg total per day of magnesium or it may have a laxative effect.   Be sure to take the B Complex.  The Benfotiamine and TTFD will need the other B vitamins.  
    • xxnonamexx
      Life Extension Benfotiamine with Thiamine has 100MG of Ben and 25 of Thia..... Do you think this is the one I should take or Objective Nutrients Thiamax (TTFD) which has 100MG Thiamine. How much magnesium should I look for? I take the womens 50+ multivitamin since consumerlabs stated and tested that it has the right amount of vitamins and not too much for men and doesn't have BHT which has shown to cause liver cancer in animals. I was never big with multivitamins as well as doctors I just read when I was first going gluten free to take a multi but I think I will stop them and work on trying the super B Thia and Ben, Mag.  
    • Oliverg
      Hi all I’ve been celiac for 4 years now, I’ve done pretty well to avoid it thus far. Last night I took the wrong pizza out of the freezer and ate the whole lot!! The non gluten and gluten pizza boxes are both very similar.   2 hours later I was throwing up violently on my hands and knees over the loo.  .horrendous stomach pains,  My hair was wet from sweat every part of my body was wet. What an awful experience, just had a bad headache today  fortunately.    Is their any products/pills anyone takes if they have realised they have just been glutened to make the symptoms a little less worse.  thanks  
    • knitty kitty
      Yes, do take your B Complex with Benfotiamine or Thiamax.  Thiamine interacts with each of the other B vitamins in the B Complex to make energy and enzymes, so best to take them together earlier in your day.  Taking them too close to bedtime can keep you too energetic to go to sleep.   The Life Extension Benfotiamine with Thiamine is Benfotiamine and Thiamine Hydrochloride, another form of thiamine the body likes.  The Thiamine HCl just helps the Benfotiamine work better.   Read the label for how many milligrams are in them.  The Mega Benfotiamine is 250 mgs.  Another Benfothiamine has 100 mgs.  You might want to start with the 100 mg.    I like to take Thiamax in the morning with a B Complex at breakfast.  I take the Benfotiamine with another meal.  You can take your multivitamin with Benfotiamine at lunch.   Add a magnesium supplement, too.  Thiamine needs magnesium to make some important enzymes.  Life Extension makes Neuro-Mag, Magnesium Threonate, which is really beneficial.  (Don't take Magnesium Oxide.  It's not absorbed well, instead it pulls water into the digestive tract and is used to relieve constipation.)  I'm not a big fan of multivitamins because they don't always dissolve well in our intestines, and give people a false sense of security.  (There's videos on how to test how well your multivitamin dissolves.).  Multivitamins don't prevent deficiencies and aren't strong enough to correct deficiencies.   I'm happy you are trying Thiamax and Benfotiamine!  Keep us posted on your progress!  I'm happy to answer any questions you may have.  
    • xxnonamexx
      I looked further into Thiamax Vitamin B1 by objective nutrients and read all the great reviews. I think I will give this a try. I noticed only possible side affect is possibly the first week so body adjusts. Life Extensions carries Benfotiamine with Thiamine and the mega one you mentioned. Not sure if both in one is better or seperate. some reviews state a laxative affect as side affect. SHould I take with my super B complex or just these 2 and multivitamin? I will do further research but I appreciate the wonderful explanation you provided on Thiamine.
×
×
  • 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.