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Ate Gluten no instant reaction?

Htxkid

By Htxkid
in Food Intolerance & Leaky Gut

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Htxkid Rookie
Htxkid
Posted

Hi,

Back in July I was diagnosed with NCGS and leaky gut. Endoscopy showed I had small ulcers too, doctor was unsure why.  Doctor also tested for food allergies. Stopped eating gluten and foods I was allergic too (mainly dairy). I was feeling good from late September to Early Dec. In Nov, I took a trip to Asia. I couldn't follow the gluten free diet there, so I ate anything I wanted. My doctor had given me a gluten digest pill to take before my meals in Asia, but she said she couldn't guarantee anything. 

Last week, I began to feel like crap, My symptoms returned, left and mid abd pain, excessive gas, feeling tired. Could this be because I ate gluten a month ago? Why didn't I react while I was in Asia?

My symptoms are always on my left to mid side of my abdomen. Could it be something other than leaky gut/gluten sensitivity? Has my gut weakened again?

Thanks

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kareng Grand Master
kareng
Posted

Who knows.   You may be fine with gluten.  You don't have celiac.  YOu ate gluten and felt fine.  Now you aren't eating gluten and feel bad - probably not a  gluten problem?

 

Sounds like gas from eating something you find hard to digest.

 

emma6 Enthusiast
emma6
Posted

what are gluten digest pills? that sounds a little suspicious to me

when you were diagnosed with NCGS were all the tests negative or did you have positive blood tests and a negative biopsy

Htxkid Rookie
Htxkid
Posted
  • Author

When I had a blood test done my vitamin D was low, CRP was high. My ttg/dgp was negative. Antigiladin Igg was a weak positive. Endoscopy was negative for celiac, however the doctor found tiny ulcers. I took Pepcid for 2 weeks to treat the ulcers. 

emma6 Enthusiast
emma6
Posted

unless they gave you a really good explanation why you would test positive for celiac without having it, i would play it safe and stay gluten free.
did your positive Antigiladin Igg go down to the normal range after being gluten free for a while? you could get it tested again see if there is any change after eating gluten in asia.

i also don't have an instant reaction to gluten, i was so shocked when i tested positive for celiac as i was eating pasta and bread everyday without any signs of a bad reaction to it.

Htxkid Rookie
Htxkid
Posted
  • Author

Just want to clear things up. My ttg/dgp was negative. My antigildan IGG was weak positive. My endoscopy showed no damage to my small intestine, which lead to a diagnosis of non celiac gluten sensitivity. Are there any other tests I could ask my doc for? Thank you for your response. 

GFinDC Veteran
GFinDC
Posted

Hi Htxkid,

I don't know of any medical tests for NCGS.  But there is one test you can do yourself that always works.  Go gluten-free for 6 months and see how your body responds.  NCGS is a condition that isn't well understood yet.  So nobody can say for sure what the results are if  you continue to eat gluten while having NCGS.  You are in charted waters there.  Some might call it the bleeding edge of medical science.

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deb-rn Contributor
deb-rn
Posted

Well, severe reactions do not always occur right after ingestion for everyone.  You could look at it this way... you don't get lung cancer after the first cigarette, but we know there is a high corrolation and if you want to avoid lung cancer, it's best to avoid cigarettes!

Debbie

Beverage Proficient
Beverage
Posted

I was taking a supplement that the naturopath thought was gluten free, although not labeled as such. I started feeling yucky only after A MONTH of taking it!  It was the only new thing I was taking, so got suspicious.  I did my own research and found that the manufacturer claims no gluten ingredients, although there is wheat processed at the facility. Within 2 days of getting off the supplement, I felt much better, but it did that a whole month for symptoms to appear.

cyclinglady Grand Master
cyclinglady
Posted
49 minutes ago, Beverage said:

I was taking a supplement that the naturopath thought was gluten free, although not labeled as such. I started feeling yucky only after A MONTH of taking it!  It was the only new thing I was taking, so got suspicious.  I did my own research and found that the manufacturer claims no gluten ingredients, although there is wheat processed at the facility. Within 2 days of getting off the supplement, I felt much better, but it did that a whole month for symptoms to appear.

Ugh!  That's horrible.  I personally recommend only certified gluten-free supplements, especially for newbies (you are sick and it's worth the extra cost to help reduce worry and help speed recovery).  But after three years, I should no signs (lab results) of any nutritional deficiencies and I have not taken even a daily multiple since my diagnosis. The only supplement in the beginning was iron since I was so anemic.   I did not even need vitamin D which I attribute to already fortified dairy and living in Sunny California.   

Doctors and well...let's face it, even many dietitians don't really know how to avoid gluten.  It's up to us, the patients, to oversee our health.  

Jaemac Rookie
Jaemac
Posted
On December 7, 2016 at 9:47 AM, Htxkid said:

Hi,

Back in July I was diagnosed with NCGS and leaky gut. Endoscopy showed I had small ulcers too, doctor was unsure why.  Doctor also tested for food allergies. Stopped eating gluten and foods I was allergic too (mainly dairy). I was feeling good from late September to Early Dec. In Nov, I took a trip to Asia. I couldn't follow the gluten free diet there, so I ate anything I wanted. My doctor had given me a gluten digest pill to take before my meals in Asia, but she said she couldn't guarantee anything. 

Last week, I began to feel like crap, My symptoms returned, left and mid abd pain, excessive gas, feeling tired. Could this be because I ate gluten a month ago? Why didn't I react while I was in Asia?

My symptoms are always on my left to mid side of my abdomen. Could it be something other than leaky gut/gluten sensitivity? Has my gut weakened again?

Thanks

Hi, I stopped eating gluten a little over five years ago because I suspected Celiac. I was a mess back then with so many symptoms it was shocking I was walking around. No one had suspected celiac because I was very overweight too. I couldn't be tested as I stopped gluten before getting the test. (long story about fighting with doctors) I just assume I have celiac as in the last 5 years I've lost 120 lbs and fixed many many problems just by not eating gluten. I tell you this because I too don't react much at the time of glutening. I had a huge bowl of real pasta about a year ago by accident (it was in the back of the pantry and we must have missed throwing it out.) I didn't feel sick that day or for days after but about a week or two later I couldn't have milk anymore, my reaction to milk was severe now. I had gotten back milk products about 2.5 years into healing along with a bunch of other foods like avocado, peppers, bananas etc. Two weeks after glutening myself I had a tablespoon of feta on a salad and had so much tummy pain I thought I was gonna die, lol. I retested milk in a week to make sure I hadn't just gotten  a stomach bug at the same time as ingesting milk, I had the same reaction, tremendous pain and illness for two days with only ingesting 1 teaspoon of cheese! I also lost the ability to have avocados and bananas. It has taken a year of healing to get those foods back. So, my long answer is YES you can have minimal or almost no NOTICEABLE signs at the time of a glutening but still be doing horrible damage to your gut which will take months to heal.  Remember, although I seriously suspect celiac, I could also be a highly sensitive NCGS too. I'll never know until they make better testing, lol. Good luck and heal well!

 

 

 

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      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
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    • lizzie42
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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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