Could A Veteran Celiac Explain This Please?

[GFreeMO]

Every single time I get glutened as the pain subsides, I get mucus and or oily floating stuff. (TMI I know) Sometimes mixed with stool, sometimes I feel like I have to go but that is all I pass. Is this because the intestines are trying to prevent gluten from getting in or is the lining shedding or what is going on? Also, what is with the severe muscle weakness in my calf muscles? When I get a bit of gluten, it feels like I walk with bricks on my feet. Everything is such an effort with the fatigue and weakness.

I was just glutened on Sat night from CC from a restaurants "gluten free" menu. I swelled up looking 9 mo. pregnant, had the glass in intestines and pain with gas and D now I have C and mucus or oily junk and depression and crying etc. I feel like I have been hit by a truck. Why is a gluten reaction so severe?

This disease is becoming so hard for me to live with with all of my other food intolerances. That was the first time that I had attempted to eat in a restaurant in 15 months and I got zapped.

[Austin Guy]

The oily, floating stuff is probably because you are not absorbing fat. The technical term is steatorrhea.

[Gemini]

Every single time I get glutened as the pain subsides, I get mucus and or oily floating stuff. (TMI I know) Sometimes mixed with stool, sometimes I feel like I have to go but that is all I pass. Is this because the intestines are trying to prevent gluten from getting in or is the lining shedding or what is going on? Also, what is with the severe muscle weakness in my calf muscles? When I get a bit of gluten, it feels like I walk with bricks on my feet. Everything is such an effort with the fatigue and weakness.

I was just glutened on Sat night from CC from a restaurants "gluten free" menu. I swelled up looking 9 mo. pregnant, had the glass in intestines and pain with gas and D now I have C and mucus or oily junk and depression and crying etc. I feel like I have been hit by a truck. Why is a gluten reaction so severe?

This disease is becoming so hard for me to live with with all of my other food intolerances. That was the first time that I had attempted to eat in a restaurant in 15 months and I got zapped.

The TMI part of your post is from undigested food. When you sustain a gluten hit, that food you ate just does not get digested and then you have that end result. I started taking digestive enzymes with meals and it made a huge difference in the "end" result. I even take one after a gluten hit, although those don't happen much at all anymore. Taking enzymes to help break down food that your body cannot do alone helps with the pain and helps ease your other symptoms.

The muscle weakness I am not sure of as I don't suffer that symptom but it could be neurological. We all know gluten affects many that way. I am sorry you got stung and hope you feel better soon. Try the enzymes...they work well as an aid to digestion and what Celiac couldn't benefit from that?

[GFreeMO]

Thanks for the info both of you! I just read about the steatorrhea. That explains the orange color of the mucus/oil junk.

Gemini, what is the name of the enzymes that you take?

[Gemini]

Thanks for the info both of you! I just read about the steatorrhea. That explains the orange color of the mucus/oil junk.

Gemini, what is the name of the enzymes that you take?

Open Original Shared Link

Here is the link for the enzymes I use. They are not cheap, unfortunately, but work very, very well. I was also having a problem with mucus and started research on it and found that it's cause can be undigested food. Well...that made sense as a Celiac. So I bit the bullet and tried these. It cleared up the problem.

I also have Sjogren's, which can affect your pancreas. So, I need help with meals because between the Celiac and the Sjogren's, I need a little extra help in the digestion department. I eat so healthy, it's ridiculous but realized that all those fruits and veggies may be difficult to break down. You just need some added power to digest your food! I hope it helps you as well as it did me.

[GFreeMO]

Open Original Shared Link

Here is the link for the enzymes I use. They are not cheap, unfortunately, but work very, very well. I was also having a problem with mucus and started research on it and found that it's cause can be undigested food. Well...that made sense as a Celiac. So I bit the bullet and tried these. It cleared up the problem.

I also have Sjogren's, which can affect your pancreas. So, I need help with meals because between the Celiac and the Sjogren's, I need a little extra help in the digestion department. I eat so healthy, it's ridiculous but realized that all those fruits and veggies may be difficult to break down. You just need some added power to digest your food! I hope it helps you as well as it did me.

Thank you! I am going to check into these. I eat a ton of fruit and veggies so hopefully they will help break it all down. They sound great.

So the mucus discharge is undigested food and it comes out looking like mucus? Sometimes I feel like I have to go and the mucus or whatever it is is all that comes out.

[Roda]

I took creon for about three months last year because I had steatorrhea for almost 8 months. I was facing having to take steriods but refused and further eliminated things out of my diet. That is when I realized I was reacting to gluten free oat contaminated products. IMHO I believe that I suffer from avenin sensitive enteropathy in addition to celiac. I'm over it now but if I get any gluten free product that has CC from oats or get glutened I suffer terrible steatorrhea for anywhere from 1-2 weeks. I find that if I take the creon with every meal(only when I get glutened bad now), eat bland and watch the fat intake after a hit it helps with the symptoms.

[GFreeMO]

I took creon for about three months last year because I had steatorrhea for almost 8 months. I was facing having to take steriods but refused and further eliminated things out of my diet. That is when I realized I was reacting to gluten free oat contaminated products. IMHO I believe that I suffer from avenin sensitive enteropathy in addition to celiac. I'm over it now but if I get any gluten free product that has CC from oats or get glutened I suffer terrible steatorrhea for anywhere from 1-2 weeks. I find that if I take the creon with every meal(only when I get glutened bad now), eat bland and watch the fat intake after a hit it helps with the symptoms.

Thank you. It makes me feel better to know what this is exactly because it's kind of alarming looking. I get it every time I get some CC but I never knew what it was exactly.

So steatorrhea can come out on it's own? Like I feel like I have to go sometimes and the orange oily stuff is all that comes out.

[JoyK8]

The muscle weakness is likely related to magnesium deficiency. Magnesium binds to undigested fats & is excreted; it is also depleted by digestion of sugars. Low magnesium also causes heart palpitations, tachycardia (rapid heart rate), insomnia & mental changes like anxiety. Epsom salts are actually magnesium sulphate - 2 to 3 cups in a warm bath (stay in for 20 minutes) after being glutened is a very effective treatment. It relieves gas and helps prevent the constipation that often follows, similar to Milk of Magnesia. When I cannot have an Epsom salts bath I take a powdered Vitamin C/Mineral supplement. 1/4 tsp in a bit of juice or water also works quite well to minimize the reaction.

[Roda]

Thank you. It makes me feel better to know what this is exactly because it's kind of alarming looking. I get it every time I get some CC but I never knew what it was exactly.

So steatorrhea can come out on it's own? Like I feel like I have to go sometimes and the orange oily stuff is all that comes out.

I think that celiac can cause some of us to have permanant digestive issues. Weird thing is I never had this prior to diagnosis or for the first year after. It started up all the sudden after I had been gluten free for a little over a year. I never thought at first it was gluten related because the reaction was different. I thought it was my gallbladder and had tests for it. When they came back as mostly alright, had slightly underfunctioning gallbladder but not enought to do surgery, I was dismissed. It got so bad that I was afraid to leave the house for fear of having an accident. I then started having burning sensations in my stomach. Due to ongoing issues I had another scope done about three months later. They found the esophagatis, gastritis, duodenitis and a gastric ulcer. I didn't have the ulcer 1.5 years earlier. The only good news I got was that my villi were intact, but I'm not sure they took the same number of samples as before though. I was treated for the ulcer and sent on my way. The ulcer symptoms went away but the steatorrhea and malabsorption continued to get worse. By August of last year I was at my whits end. After reading on here I decided to try some digestive enzymes from the health food store. They helped some, but they were just not strong enough. My GI wanted to put me on steroids but I said no. He agreed with me that a change in my diet some was worth a try and prescribed me the creon. Thank goodness I went this route. Not only did I avoid the steriods, but realized additional things in my diet that was causing the problem.

So do you get this only when you know you have been glutened? I couldn't pinpoint any overt glutenings and I think it was a gradual build up that lead to the bad symptoms. Have you explored any other intolerences? For me it was the gluten free oats. I had tried them (BRM) after I had been gluten free for 7 months and suffered immediate acid reflux, abdominal pain/bloating, constipation and a blistering rash on my buttocks. I never ate them again. However I continued to use other BRM products. I put two and two together after I eliminated all the BRM products and I started feeling better. There are other gluten free products I've had to eliminate because of the oat cross contamination also. I have a few brands that I tolerate now without any problems. I had a minor set back a couple of months ago that's when I realized I was reacting to something I never thought to check for oat CC. Even though these products are certified gluten free the tests do not test for Avenin. Just something to think about.

I found this site to be informative.

Open Original Shared Link

[Lima Bean]

. Epsom salts are actually magnesium sulphate - 2 to 3 cups in a warm bath (stay in for 20 minutes) after being glutened is a very effective treatment. It relieves gas and helps prevent the constipation that often follows, similar to Milk of Magnesia. When I cannot have an Epsom salts bath I take a powdered Vitamin C/Mineral supplement. 1/4 tsp in a bit of juice or water also works quite well to minimize the reaction.

How is bathing in Epsom salts the same as drinking Milk of Magnesia? Or are you bathing in the Milk of Magnesia?

Are you saying that the stuff in the epsom salts goes thru your skin, fat, muscle, veins & into your blood stream? I would need to see some proof of that.

[GFreeMO]

Thank you so much for your help and for the link to the page that explains it. I appreciate it!