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Given Up Gluten And Dairy..still Having Symptoms

ButtercupSarah

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ButtercupSarah Rookie
ButtercupSarah
Posted

I have been gluten free over a year and went dairy light a few months ago and dairy free about a month and half ago.

 

Giving up gluten solved many of my problems....numbness in my arms and legs, extreme fatigue, and some of the brain fog issues (still don't feel as quick as I used to be)

 

When I do get "glutened" I have VERY neurological symptoms....muscles spasms, eyes shaking, trembling, weakness, super nauseous and dizzy, etc.

 

I am still having BAD GI issues, and I can't figure out why!

 

Extreme bowel urgency, almost constant diarrhea for years, blood in stool, gas, worst is the few accidents I have experienced (ONE IN AN AIRPORT!!). I have been hospitalized twice once with extreme pain, vomiting, diarrhea (no diagnosis, just pain killers)

 

I have been recommended to a GI for a colonoscopy.

 

Is anyone familiar with these symptoms or still have them after giving up gluten?

 

 

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NoGlutenCooties Contributor
NoGlutenCooties
Posted

Wow... that sounds positively awful!  I'm just wondering if you've ever tried an elimination diet to see if you might be intolerant to something else.  Seems like having other food issues is common with Celiacs.

kareng Grand Master
kareng
Posted

Sounds like gluten isn't the problem or gluten is a problem but there are more issues going on.  You might try an elimination diet to see what other foods bother you.  And the colonoscopy is probably a good idea, too.  

GottaSki Mentor
GottaSki
Posted

I agree that an elimination diet is the best way to weed out other intolerance.

 

It would be wise to check that the GI you were referred to has experience with Celiac and NCGS.

 

Another very good idea would be to have an endoscopy at the same time as the colonoscopy....sadly not all doctors check all posibilities.

kareng Grand Master
kareng
Posted

I agree that an elimination diet is the best way to weed out other intolerance.

 

It would be wise to check that the GI you were referred to has experience with Celiac and NCGS.

 

Another very good idea would be to have an endoscopy at the same time as the colonoscopy....sadly not all doctors check all posibilities.

 

.

But if the OP has been gluten-free for a year....  They won't discover Celiac disease. And might tell her she doesn't have any issues with gluten.  Its understandable, but hard when people cut out the gluten before Celiac testing.

GottaSki Mentor
GottaSki
Posted

.

But if the OP has been gluten-free for a year....  They won't discover Celiac disease. And might tell her she doesn't have any issues with gluten.  Its understandable, but hard when people cut out the gluten before Celiac testing.

 

Have to disagree here.  She has been gluten free, yet digestive symptoms remain.  Yes, I know I am one of the supposedly rare cases that had active celiac disease continue for subsequent endoscopic biopsies....my celiac docs at UCSD did annual endoscopies because I continued to have symptoms completely gluten-free (confirmed by complete antibody panels).

 

I am not saying the endoscopic biopsies will be positive for Celiac.  I am saying that an endoscopy will look at the upper digestive organs which very well may be part of this person's issues.  Why limit testing to the lower intestine?

kareng Grand Master
kareng
Posted

Have to disagree here.  She has been gluten free, yet digestive symptoms remain.  Yes, I know I am one of the supposedly rare cases that had active celiac disease continue for subsequent endoscopic biopsies....my celiac docs at UCSD did annual endoscopies because I continued to have symptoms completely gluten-free (confirmed by complete antibody panels).

 

I am not saying the endoscopic biopsies will be positive for Celiac.  I am saying that an endoscopy will look at the upper digestive organs which very well may be part of this person's issues.  Why limit testing to the lower intestine?

That's true. I have seen so many told they don't have celiac because the docs don't get it. Can't hurt while they are there.

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GottaSki Mentor
GottaSki
Posted

That's true. I have seen so many told they don't have celiac because the docs don't get it. Can't hurt while they are there.

 

Yep...me too...that is why I encourage people to question their GI's Celiac knowledge and experience...never assume a doctor has enough celiac and/or any real food intolerance knowledge.

MGR Apprentice
MGR
Posted

Hi there, the symptoms you describe: extreme bowel urgency, almost constant diarrhea for years, blood in stool, gas, worst is the few accidents I have experienced (ONE IN AN AIRPORT!!). I have been hospitalized twice once with extreme pain, vomiting, diarrhea (no diagnosis, just pain killers)] ...

 

sound like you have ulcerative colitis. I have had this condition for years- with periods with extreme symptoms alternating with periods where I seemed to be in remission I have recently discovered that gluten is one of the major triggers for this condition for me- I have recently been travelling in Louisiana and although I thought I was beeing extremely careful in restaurants, and had my own skillet with me where I prepared foods, I still got severely glutened. After 10 days of travelling I got back home I had terrible joint pains and tummy ache, etc that I get with celiac, but I also had blood in the stool- I managed to control it, by going on an extremely strict diet.. I am still on the verge of a serious attack - 

 

Other contributors to your post, suggested you might have other food intolerances apart from dairy and gluten- I find that if I eat too many oranges, tomatoes, corn, certain uncooked vegetables (especially beans, broccoli, coliflour), I get blubbly gases in my colon, and if I am not careful, it then develops into bloody diarrhoea, etc... I would ask for both endo- and colonoscopy the next time you see your GI. Also remember that some people with ulcerative colitis are tTG IgGA antibody deficient- and the blood might come out negative for celiac. I know, it is all very tricky!!!

 

According to some studies, it is not uncommon to have both celiac and and ulcerative colitis (especially the type called proctitis). I am in UK, here is a link from the NHS describing this connection. You will find it is not so far fetched!! Cheers!!

 

Open Original Shared Link

ButtercupSarah Rookie
ButtercupSarah
Posted
  • Author

Thank you so much MGR! My doctor brought up Ulceritive Colitis and the symptoms sound spot on...I am making the GI appt ASAP. I always wondered why going gluten free cleared up so much and my gut remained a wreck! I have been wading through all of the bowel diseases and this seems the most probable.

MGR Apprentice
MGR
Posted

I am glad I could help! With me it happened the other way round ... I have had severe joint problems all my life and i have always been trying to keep a reasonable weight to protect my knees- always on a low carb diet, not eating bread, restricting pasta, no cakes, etc. I even went on a ridiculously strict high protein diet called DUCAN and wondered why I fet so well on it! Last Summer I had an extremely severe attack of bloody diarrhoea, it wouldn't even stop with the medicines I take when I am like this.. Went to my village doctor ( I was on holidays in Spain at the time) and after a couple of questions he suggested that gluten might be the problem- I went gluten free and only after 3 days the diarrhoea stopped! I have been fab ever since, but had to go on a gluten challenge for testing and was soooooo ill.. The endoscopist saw damage in the small intestine. I also get DH like rashes .... In sum, just a charming wreck!

Just let me know if I can help any further... I also saw some other post on this forum referring to this- just write ulcerative colitis in the search function and. Couple of threads will come up.

MGR Apprentice
MGR
Posted

Hi again, here is a link to an article on IgA deficiency and ulcerative colitis- it is a bit specialised but jut go to page 8 and you will read how patients with this deficiency are very likely to develop celiac, colitis, etc...

Open Original Shared Link

ButtercupSarah Rookie
ButtercupSarah
Posted
  • Author

Hi again, here is a link to an article on IgA deficiency and ulcerative colitis- it is a bit specialised but jut go to page 8 and you will read how patients with this deficiency are very likely to develop celiac, colitis, etc...

Open Original Shared Link

 

Is this the same as Total Salivary SIgA? I had this tested recently and it came back VERY depressed

 

My result was 6 mg/dl - Normal 25-60 mg/dl

MGR Apprentice
MGR
Posted

Hi ButtercupSarah, I am not sure... I am not a doctor , maybe someone else will be able to chip in with this? Or you might want to ask your doctor more specific questions about this test. Hope you get to the bottom of this soon!! Cheers

ButtercupSarah Rookie
ButtercupSarah
Posted
  • Author

I found a few very interesting articles on the relationship between SIgA and celiac/colitis!

 

I have VERY high cortisol, hypothyroid, and as immune system in the toilet...constant sinus infections and bronchitis, as well as UTI's and yeast infections....

 

I kind of feels like things are starting to make sense!

 

Open Original Shared Link

anand Newbie
anand
Posted

Are u by any chance taking any blood pressure medication or any other medication that doesn't agree with you

ButtercupSarah Rookie
ButtercupSarah
Posted
  • Author

Are u by any chance taking any blood pressure medication or any other medication that doesn't agree with you

The only meds I take are my armor for my hypothyroid....but the gut symptoms have been ongoing for upwards of 7+ years. I just started taking armor less than a year ago.

MGR Apprentice
MGR
Posted

I found a few very interesting articles on the relationship between SIgA and celiac/colitis!

 

I have VERY high cortisol, hypothyroid, and as immune system in the toilet...constant sinus infections and bronchitis, as well as UTI's and yeast infections....

 

I kind of feels like things are starting to make sense!

 

Open Original Shared Link

I am glad!

doug10 Newbie
doug10
Posted

You may also look into Microscopic Colitis

 

Here is a web page to check out

 

Open Original Shared Link

 

Good luck

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