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Gluten Intolerance Without Your "typical" Stomach Symptoms

not4sakn

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not4sakn Newbie
not4sakn
Posted

I'm new to the forum and had a few questions regarding your own personal experience with gluten sensitivity/celiac and the symptoms surrounding it.

 

Is it possible to have gluten sensitivity without the typical stomach symptoms such as bloating, pain, gas, vomiting, diarrhea etc...?

 

I've read numerous articles on gluten and the whole host of symptoms surrounding it. I'm just curious how many actually suffered from neurological issues with very minimal to no stomach issues what so ever.

 

Over the past 5 years I've been suffering with symptoms that no doctor can seem to put their finger on. I've had countless tests and even a celiac biopsy which came back negative. 

 

My symptoms began with brain fog, pressure like head feeling, and visual floaters. Over the years its progress to constant neck pain, random facial tingling, mild dizziness, difficulty concentrating, memory issues, insomnia, anxiety, pounding heartbeat in my head and with all the many tests I've had done, the doctors say I'm healthy! lol

 

While that's great news my symptoms aren't normal and I recall a period in my life that I enjoyed life, things were great and my outlook positive. That's been quite a while since I can honestly say that but I haven't given up hope.

 

Many doctors brush off the likelyhood of celiac/gluten intolerance because I have no stomach issues. Sure I have mild reflux from time to time but nothing major. Could all these neurological symptoms be a direct result of gluten while my stomach remains "unharmed/untouched" by it? 

 

Thanks for your replies!

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nvsmom Community Regular
nvsmom
Posted

Welcome to the board. 

 

Is it possible to have gluten sensitivity without the typical stomach symptoms such as bloating, pain, gas, vomiting, diarrhea etc...?

 

I've read numerous articles on gluten and the whole host of symptoms surrounding it. I'm just curious how many actually suffered from neurological issues with very minimal to no stomach issues what so ever.

 

 

Stomach issues aren't always the main problem for people. I did have some stomach issues (bloating and pain) that were getting harder to ignore but for the first 30 years of my life, they were merely an inconvenience. I never had vomiting or "d". Migraines were a major symptom for me and I developed a lot of arthralgias that affected my life. It had an effect on my cognitive function too. And then there were minor irritating symptoms like hair loss and such. I believe there are around 300 symptoms of celiac disease, only a few are GI related.

 

That all being said, a celiac's stomach is not left unharmed even if you aren't feeling it (not many nerves in there). Damage would happen to the villi.  If no damage is occurring, you would be classified as non-celiac gluten intolerant (NCGI) which means you would have the possibility of experiencing all the same symptoms that a celiac does, but would not have intestinal damage (so all celiac blood tests would be negative).

 

Sounds like you should be tested....

not4sakn Newbie
not4sakn
Posted
  • Author

Welcome to the board. 

 

 

Stomach issues aren't always the main problem for people. I did have some stomach issues (bloating and pain) that were getting harder to ignore but for the first 30 years of my life, they were merely an inconvenience. I never had vomiting or "d". Migraines were a major symptom for me and I developed a lot of arthralgias that affected my life. It had an effect on my cognitive function too. And then there were minor irritating symptoms like hair loss and such. I believe there are around 300 symptoms of celiac disease, only a few are GI related.

 

That all being said, a celiac's stomach is not left unharmed even if you aren't feeling it (not many nerves in there). Damage would happen to the villi.  If no damage is occurring, you would be classified as non-celiac gluten intolerant (NCGI) which means you would have the possibility of experiencing all the same symptoms that a celiac does, but would not have intestinal damage (so all celiac blood tests would be negative).

 

Sounds like you should be tested....

Thanks for the reply! I was tested via biopsy which was negative for intestinal damage. Like you said, that doesn't mean I'm not gluten intolerant which from my understanding there is no test for. 

 

The only way to actually confirm this is to eliminate all gluten from your diet for atleast 2 months. I've read testimonies were some noticed positive changes within days. While others went through a detox period where symptoms worsened for weeks before they ever got better. "The storm before the calm" as some put it. This period took some close to 2 months to start noticing relief but everyday showed new signs of hope.

nvsmom Community Regular
nvsmom
Posted

Some doctors think the anti-gliadin antibodies tests (AGA IgA and AGA IgG) can be used for gliadin (gluten) sensitivity tests in both celiacs and those with NCGI BUT this is not a widely accepted idea and those tests are not the most reliable.  This report discusses it a bit on pages 10-12:  Open Original Shared Link

 

I'm glad you knew that it can take months to see improvemnets! Many expect improvements within a day or so, which can be true for some symptoms but not all, or even most.

WinterSong Community Regular
WinterSong
Posted

What's scary about Celiac is that most any symptom you can think of can be Celiac-related - even having no symptoms! I have a Celiac friend whose only symptom is joint pain. And another friend who has neurological symptoms (she wasn't tested, so we don't know if she has Celiac or a gluten intolerance).

 

Don't rule out Celiac just because you aren't having the traditional symptoms. I personally believe that Celiac should be a routine test for everyone that is done during yearly physicals. 

not4sakn Newbie
not4sakn
Posted
  • Author

Thanks for replying.

I'm not ruling out Celiac. I'm saying I had a biopsy done which was negative. Doesn't mean I'm not highly intolerant.

I've also noticed a skin rash in my groin area. This comes and goes intermittently. My dermatologist gave me a steroid cream which helps but it always comes back. He says it's from sweat. I'm extremely clean, shower at least once a day and do not sweat much at all. This with all my other symptoms leads me to think it's gluten related.

GottaSki Mentor
GottaSki
Posted

Thanks for replying.

I'm not ruling out Celiac. I'm saying I had a biopsy done which was negative. Doesn't mean I'm not highly intolerant.

I've also noticed a skin rash in my groin area. This comes and goes intermittently. My dermatologist gave me a steroid cream which helps but it always comes back. He says it's from sweat. I'm extremely clean, shower at least once a day and do not sweat much at all. This with all my other symptoms leads me to think it's gluten related.

Have you had a recent complete celiac antibody panel or nutrient blood tests?

If not, IMO it would be wise to have them run and then remove all gluten for at least three months...longer is better...especially with non-digestive symptoms as the digestive symptoms are often the first to improve while other symptoms can take a very long time to improve.

Good luck to you :)

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not4sakn Newbie
not4sakn
Posted
  • Author

Would someone who's only gluten intolerant take as long to get well compared to a celiac with intestinal damage? 

 

When I had an intestinal biopsy the tests was negative for celiac. If there's no damage why would someone that's only gluten intolerant take as long to show signs of improvement if gluten is the culprit? I'm talking 6-8 weeks or more to see change?

frieze Community Regular
frieze
Posted

Open Original Shared Link   and check out anything else by Dr hadjivassliou.  good luck

Would someone who's only gluten intolerant take as long to get well compared to a celiac with intestinal damage? 

 

When I had an intestinal biopsy the tests was negative for celiac. If there's no damage why would someone that's only gluten intolerant take as long to show signs of improvement if gluten is the culprit? I'm talking 6-8 weeks or more to see change?

  • 2 weeks later...
not4sakn Newbie
not4sakn
Posted
  • Author

So after more research I discovered that while the foods I'm eating are gluten free there could be cross contamination issues. 

 

I make home-made pico de gallo and guacamole which I love! I eat Tostitos multi-grain scoops which on Frito's website it's listed as a gluten free food. However, it goes on to mention that while it doesn't contain gluten it could be manufactured on the same equipment that has gluten in them.

 

This is very disheartening. It seems all my good efforts could possibly be in vain. I'm trying so hard to see if this diet helps and all the while I'm still possibly eating food with the very thing in it thats making me feel bad.

 

I read every label carefully and it seems this is all we have to go off of and yet that isn't enough. 

 

If I have been cross contaminated does this mean everything starts over since I truly havent been gluten free? Could it still take 2-4 months to see real huge differences if gluten is the culprit for me?

notme Experienced
notme
Posted

i eat tostitos all the time and they are gluten-free :)  are you maybe having a reaction to corn?  sometimes when we take out the (obvious) gluten, we have a reaction to something else.  i have a secondary sensitivity to soy, which i didn;t figure out until i removed the gluten and my system started to settle down.  use a food journal, maybe.  also, have you replaced your 'old' (possibly with embedded gluten) cutting board(s), wooden spoons, etc ? 

not4sakn Newbie
not4sakn
Posted
  • Author

On their website it says its manufactured on the same equipment containing gluten foods. That's what caught my attention.

 

My cutting boards are the thick plastic ones. Most of my spatulas, spoons, etc.. are also plastic. I do have a few bamboo ones that are hardly used. 

 

I haven't cut dairy out completely but I don't eat it often anyways. Every now and then I'll have cheese on a sandwich or a taco but that's it. 

 

The thing is, I don't know if gluten is causing all this or not. I was tested for celiac via biopsy and it was negative which doens't mean anything really just that I don't have celiacs disease. I don't know what to cutout to see what makes a difference. At this point I'm willing to try anything. 

GFinDC Veteran
GFinDC
Posted

Hi Not,

 

Welcome to the forum! ;)

 

Did you get a copy of the pathology report for your endoscopy?  Some members might be able to interpret that for you.  I think the  current recommendation is to take 4 to 6 biopsy samples but maybe it is 6 to 8, not sure really.  Anyway, the reason for multiple samples is the damage in celiac might not be universally present.  So it could be missed with a single sample, which is what some GI's do it seems.  You'll probably need to ask your GI how many biopsy samples he took to find out for sure.

 

You might want to read up gluten ataxia.  Gluten ataxia is when the brain is affected by eating gluten.  I think it was Dr. H. referenced earlier that did a study showing that patients with gluten ataxia may not show any damage to the gut.  Nerve cells grow slowly, so healing nerve related issues can take months to years.

 

You could try mission brand corn chips and corn tortillas if you are concerned about the Tostito''s brand.  Mission brand corn tortillas are made on dedicated lines.  I am not sure their chips are on dedicated lines but I've never had a problem with them.

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