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Suspecting Nc Gs- Starting Probiotics


Lys-88

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Lys-88 Newbie

First a very brief history - I'm a 23 year old girl diagnosed with crohns 8 or 9 years ago, and have been making minor diet changes ever since. In Spring 2009 I was at my worst, celiac panel came back negative, but frustrated with symptoms I went raw anyway, felt almost great. Had a tough time staying strict and during the colder months started eating some cooked, vegan, grain-free foods (organic soups, hummus, etc). Come the following spring, I was taking a bite of this, bite of that.. no matter it was vegan or not. A bite of cracker or pretzel, or 3 croutons on my salad weren't a big deal to me, because it was such a small amount I didn't feel it'd cause too much damage.. But maybe I was wrong. I mean, three croutons?

I'm not sure if this is the cause, but once again regardless of my high-raw diet (with only the few 1-3 bite a day cheats usually a cracker, pretzel, crouton, noodle of pasta, teriyaki vegetables, etc)my symptoms are unbearable to the point I do not want to leave my house. I come home from work and lie in bed. Maybe 1-2 bites a day of gluten really DOES make a HUGE difference??? I don't know. I'm sick of pretending it might not though, so 4 days ago I cut gluten 100% out of my diet (as well as any dairy or soy 1-2 bite cheats). My only cheat has been a gluten-free english muffin (and yes, rice does make my "arthritis" flare).

Symptoms-

intestinal discomfort, bloating, gas (worst it's ever been and suffer 24/7 literally), abdominal pain, cramping, diarrhea, all GI symptoms worsen dramatically when I eat ANY amount of fat!.. Arthritis, puffiness of face, edema in lower legs/feet, water retention, extremely dry skin, severe fatigue and loss of energy, forgetfulness, depression.

My main concern is the GI symptoms. Everything I eat has my stomach churning, causes bloating/gas. But also ANY amount of salt (I usually use organic Himalayan sea salt) has my body puffy and my ankles tightly swollen and "woody" feeling.

So enough is enough, I'm ready to begin healing. Four days in and no major improvement, the gas and tightness has lessened slightly but discomfort continues. I don't expect magic. But maybe it's not improving due to part 2 of my healing regimen: I decided after cutting out gluten that I need to get in some good probiotics, hopefully to help the GI heal up and become symptom-free a little quicker. I had floragen3 and one other kind of probiotic, I started taking those daily. I bought kimchi and would take a few bites here and there, usually with dinner (beyond simple low-fat raw salad). I also bought kombucha tea to sip on which I've had 2 bottles of so far. My new Garden of Life Raw probiotics arrived today so I took one with dinner and a few bites of kimchi. My intestine is churning, noisily.. Tight and uncomfortable, and immediately I get gassy. I don't really overdo it with the kimchi because it's only a few bites, but for some reason any amount does this, and also I notice I get churny-gassy when sipping Kombucha. Not sure if pills are making difference with those symptoms or not but it's easier to tell when I eat/drink the probiotic foods.

So mainly I'm just wondering if this is going to go away? Should I stop the probiotics if going 24 hours without them seems to calm the stomach (in a way, still eating a spinach-cucumber-tomato-lemonjuice salad has me slightly upset) or should I keep up with them because this is normal for your gut to react this way starting them? I've never kept up with the things because this happens every time I try to take probiotics fo 5-7 days, it's constant discomfort and more gas. But maybe that's just them starting to work and push out the bad bacteria.

Also, is it really possible that TINY amount of gluten I'd eat, and not everyday, would cause the symptoms to be THAT severe? The GI upset to be that intolerable and the gas to be that bad?? It just seems like SOOO much GI discomfort for such a tiny amount..

Thanks for anyone who takes the time to read and even more to those who take the time to respond..


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It's possible you have some other issue going on, but as an answer to your question about the amount of gluten you were ingesting and it causing symptoms..yes. That amount can cause your symptoms, and they can last for days.

I ate a sample of cheese from the grocery store on Saturday. They wre serving it with crackers.

My hubby tried the sample and raved about how good it was, and said I should try it. I asked for a small piece of just the cheese because the cracker had gluten. As I chewed the cheese there was a crunch..and I realized there was a crumb of cracker.

That crumb caused a severe reaction. It's now 3 days later and I'm still feeling it.

Ingesting even a tiny crumb like that if you have Celiac disease can cause symptoms for up 2 weeks..and longer in some people.

Try going completely gluten-free, avoiding even trace amounts..and see if your symptoms settle down?

Lys-88 Newbie

Thanks for the reply. I have been doing my best at avoiding all trace amounts and possible cross-contamination. I've also been avoiding soy (except a little tamari), all beans/legumes, all dairy as before, and peppers, broccoli, hard-to-digest vegetables as well. Trying to stay low-fat but finding it a little hard, and still am having a hard time digesting fats. Probiotics are still causing discomfort too, and it's been over a week of being on them now. I wish this adjustment period- if that's what it is- would pass. I'm feeling very bloated, some symptoms have improved though and my energy is slowly coming back for the most part, so I know I'm making a little progress. Just trying to stay motivated and stick to it. I wonder if I decrease the amount of fruit I eat if that may help reduce symptoms until I can adjust? I just want to feel normal again.. it's been so long, and I don't even remember what it feels like anymore. My dad has almost every last symptoms of celiac so I'm convinced that gluten is the culprit here (as well as trace amounts of soy, beans, rice, etc in my diet).

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    • SamAlvi
      Hi, thank you for the reply. Unfortunately, no other antibody tests were ordered. I am a 32-year-old male. About two months ago, I ate pancakes and then developed severe diarrhea that lasted the entire day. At night, I became unconscious due to fluid loss and was admitted to the ER, where I received IV fluids. Two days later, I ate bread again and once more developed severe diarrhea. I ended up in the ER again and received IV fluids. In my country, Pakistan, doctors are unfortunately not very thorough, so they treated me for a stomach infection. I visited three or four doctors, including a gastroenterologist, but it seemed like they just wanted to keep me on medications and IV fluids. Eventually, I did some digging myself and started connecting the dots. For years, I’ve had excessive gas buildup and frequent loose stools, but I never paid much attention to it. I also cannot easily digest dairy products. Two years ago, I had a CBC test that showed iron deficiency. My doctor told me to eat more meat and said it was nothing serious. However, for the past five years, I’ve also had severe motion sickness, which I never experienced before. Whenever I get on a bus or in a car, I sometimes lose consciousness for 10–20 seconds and wake up sweaty, and occasionally I feel the need to vomit. After more research on the internet, I came across gluten and celiac disease, so I got two related tests (TTG-IgA & TTG IgG) done along with a stool test and another CBC. The stool test showed weakly positive blood. Ever since eating those pancakes and bread, I’ve had a burning sensation in my gut. My doctor reviewed my tests, he told me to completely stop eating gluten and started me on IV fluids for 20 days, saying that I had severe inflammation in my gut. It has now been two months since I quit gluten, and I’m still not sure whether this is celiac disease or gluten intolerance. I don’t really trust doctors in Pakistan, so I thought I might get some help here.
    • trents
      Welcome to the celiac.com community, @SamAlvi! Were there any other antibody tests ordered? Particularly, was there a "total IGA" test ordered to check for IGA deficiency. When people are IGA deficient, celiac panel IGA test scores, such as the TTG-IGA, are likely not valid. If a total IGA test was not ordered, I would request such to be done. Note: "Total IGA" goes by other names as well. I will include a primer on celiac disease antibody testing which does a good job in covering the nomenclature variations connected with the various tests. Elevated IGG scores can certainly indicate celiac disease but they are more likely than elevated IGA tests to be caused by something else.  
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