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

Anyone have similar symptoms?

CEMO

Recommended Posts

CEMO Newbie
CEMO
Posted

So, for most of my childhood I didn't get sick often and would rarely throw up (only if I had food poisoning), but during the summer before freshman year of high school I began throwing up violently. I didn't have food poisoning and I wasn't sick--it came completely out of the blue--but since it was the first time it happened I just let it slide. 

As I went into high school I would wake up nauseous every day for no reason either. It always happened early in the morning, often times waking me up before my alarm even went off. I went to the doctor and they prescribed me anti-nausea medication and it worked, but they never diagnosed the issue. 

Anyway, after that a cycle of nausea has been effecting me for about five years. The pattern is that I'll be fine most of the time, but about once a month (especially if I've been eating a lot of refined carbs like bread and pasta), I'll get violently sick with diarrhea and vomiting. It always happens in the middle of the night, around 3 - 5 AM. There were periods when it stopped happening (when I went on a low carb diet, which is why I initially thought it was connected to my carbohydrate intake), but it would always come back. 

Then before going into university the morning nausea came back, this time with no vomiting. I would wake up in the middle of the night at around 3 - 5 AM, and would feel on the brink of throwing up, especially if I lied down. So I went to the doctors and they suggested I might have celiac disease (my grandmother has celiac disease and so does my cousin so I am genetically susceptible). I got the blood work the same day and after that immediately started on a gluten free diet because I wanted the nausea to stop. Well, it did. Although the first week was torture, my body slowly got used to it. I stopped experiencing bloating (I never even noticed I had the issue until it was gone). I also used to have a really hard time maintaining my weight, but now I'm the lightest I've ever been and I don't even try for it. Most importantly, I haven't had the usual periodic nausea and vomiting in over three months. 

But the blood results came back negative for celiac disease. My doctor suggested I had IBS and shooed me out of her office, and I just continued being gluten free. I've been eating lots of vegetables, lots of rice, and not a lot of processed gluten free foods (too expensive). However, I haven't tried reintroducing gluten into my diet to see if the symptoms come back (with school going on I don't want to risk it).

My question is whether you've ever heard of similar symptoms? Keep in mind that I felt fine for long periods of time (if you discount occasional bloating). It almost felt like something was building up in my system and my body purged itself once the levels got to high, and I always felt the culprit was high carb intake. Now, however, I eat tons of rice and even more sugar than I used to, and I feel fine with those.  Is it gluten? Can gluten build up in your body? thank you in advance :)

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

Welcome!

Symptoms vary with those with celiac disease.  It is why a diagnosis is often so hard to get.  You said that you tested negative on celiac testing.  I would confirm whether or not you had a complete celiac panel or just a screening test: TTG.  Here is the full panel:

 
-Tissue Transglutaminase (tTG) IgA and (tTG) IgG
-Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG
-EMA IgA 
-total serum IgA and IgG (control test)
-AGA IGA and AGA IgG - older and less reliable tests largely replaced by the DGP tests
 
-endoscopic biopsy - make sure at least 6 samples are taken
 
VERY IMPORTANT:  Keep eating gluten daily until ALL testing is complete or the tests can be inaccurate.  
 
(Source: NVSMOM -- ?)
 
Why do I ask about the full panel?  The screening TTG does not catch all celiacs.  With a Grandmother who has celiac disease, you should get a full panel.  

 

Gluten does not stay in the system.  It passes like any other food.  For celiacs (autoimmune disorder that attacks the lining of the small intestine), eating gluten can trigger an autoimmune flare-up that can last for days, weeks and months!!!

 
CEMO Newbie
CEMO
Posted
  • Author
10 hours ago, cyclinglady said:

Welcome!

Symptoms vary with those with celiac disease.  It is why a diagnosis is often so hard to get.  You said that you tested negative on celiac testing.  I would confirm whether or not you had a complete celiac panel or just a screening test: TTG.  

 

Thanks! I'm pretty sure I only got a screening because I just got blood work and that's it. My doctor said she was positive I didn't have celiac disease from the results, but I'll go back and make sure. 

cyclinglady Grand Master
cyclinglady
Posted
1 hour ago, CEMO said:

Thanks! I'm pretty sure I only got a screening because I just got blood work and that's it. My doctor said she was positive I didn't have celiac disease from the results, but I'll go back and make sure. 

The celiac panel (blood test) is comprised of several tests.  You may have just had the TTG IgA and the IgA control test.  

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 SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      High TTG-IgG and Normal TTG-IgA

      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining...
    2. SamAlvi
      - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      High TTG-IgG and Normal TTG-IgA

      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
    3. Jsingh
      - Jsingh replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

      Hi, My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine...
    4. lizzie42
      - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin. He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her...
    5. trents
      - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,869
    • Most Online (within 30 mins)
      7,748
    LMGarrison
    Newest Member
    LMGarrison
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      High TTG-IgG and Normal TTG-IgA

      By trents · Posted

      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining of the small bowel which generates specific kinds of antibodies. Some people are IGA deficient and such that the IGA antibody tests done for celiac disease will have skewed results and cannot be trusted. In that case, there are IGG tests that can be ordered though, they aren't quite as specific for celiac disease as the IGA tests. But the possibility of IGA deficiency is why a "total IGA" test should always be ordered along with the TTG-IGA. The other modality is an endoscopy (scoping of the upper GI track) with a biopsy of the small bowel lining. The aforementioned autoimmune response produces inflammation in the small bowel lining which, over time, damages the structure of the lining. The biopsy is sent to a lab and microscopically analyzed for signs of this damage. If the damage is severe enough, it can often be spotted during the scoping itself. The endoscopy/biopsy is used as confirmation when the antibody results are positive, since there is a small chance that elevated antibody test scores can be caused by things other than celiac disease, particularly when the antibody test numbers are not particularly high. If the antibody test numbers are 10x normal or higher, physicians will sometimes declare an official diagnosis of celiac disease without an endoscopy/biopsy, particularly in the U.K. Some practitioners use stool tests to detect celiac disease but this modality is not widely recognized in the medical community as valid. Both celiac testing modalities outlined above require that you have been consuming generous amounts of gluten for weeks/months ahead of time. Many people make the mistake of experimenting with the gluten free diet or even reducing their gluten intake prior to testing. By doing so, they invalidate the testing because antibodies stop being produced, disappear from the blood and the lining of the small bowel begins to heal. So, then they are stuck in no man's land, wondering if they have celiac disease or NCGS. To resume gluten consumption, i.e., to undertake a "gluten challenge" is out of the question because their reaction to gluten is so strong that it would endanger their health. The lining of the small bowel is the place where all of the nutrition in the food we consume is absorbed. This lining is made up of billions of microscopically tiny fingerlike projections that create a tremendous nutrient absorption surface area. The inflammation caused by celiac disease wears down these fingers and greatly reduces the surface area needed for nutrient absorption. Thus, people with celiac disease often develop iron deficiency anemia and a host of other vitamin and mineral deficiencies. It is likely that many more people who have issues with gluten suffer from NCGS than from celiac disease. We actually know much more about the mechanism of celiac disease than we do about NCGS but some experts believe NCGS can transition into celiac disease.
    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
    • Jsingh
      Son's legs shaking

      By Jsingh · Posted

      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
    • trents
      Bob red mill gluten free oats

      By trents · Posted

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
×
×
  • 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.