Anyone have similar symptoms?

[CEMO]

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

[cyclinglady]

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]

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]

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.