This is topic Extreme Intestinal Pain in forum Medical Questions at LymeNet Flash.


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Posted by Mars Bars (Member # 50329) on :
 
Hi folks, just wondering if anyone has experienced the following:

Episodes of intestinal gas (high up in gut) that causes such severe pain I end up rolling on the floor. Tummy tight like a drum. Only lasts about 24-48 hours, but wipes me out for days afterwards and causes significant drop in blood pressure.

I've ended up in the ER for this. Appendix, gall bladder, ulcer, celiac have all been ruled out. Doctors have been useless, except to give me hydrocodone to ride the pain out.

This is scary stuff, because it feels as if there is so much pressure in there, my gut might burst.

I've tried diet, fasting, detox, everything I can think of but nothing prevents this from just showing up out of the blue. I can't identify any triggers.

Anybody out there experiencing this?
 
Posted by TF (Member # 14183) on :
 
Yes, I experienced this for years. I went to a few gastros to try and get it diagnosed.

Finally a top gastro tested me for lactose intolerance and that was it! So, I could not digest milk sugar. Instead, it would ferment in my gut and blow my abdomen out like a balloon.

And, nothing would get rid of the pain.

This can happen many hours after drinking milk or eating a milk product like ice cream, pancakes, etc. So, it can happen 8 hours after eating the offending food. It starts out slowly and gets worse and worse and lasts, as you said, for about 24 hours or more.

The test is done as an outpatient. You drink a milk sugar drink and then you begin blowing into a balloon machine every so often. If you cannot digest milk sugar, you will be expelling an unusually high level of oxygen in your exhale. It is coming from the stomach and travels to the lungs!

After about 2 or 3 hours, they said I already registered the highest reading the hospital had ever seen, so I could go home. They had the diagnosis.

Meanwhile, for me, the bloating had just begun.

The way to stop this when it happens is to take a laxative like Milk of Magnesia or something even stronger to push the fermented milk sugar out of the gut. You have to take enough to move the gas.

I take Lactaid pills now any time I am going to drink milk or eat something with milk in it. They take care of the problem totally.

But, if you ever forget your Lactaid, then you must use the laxative approach. I carry Lactaid everywhere I go. It even seems to work if I take it 4 hours after consuming milk.

So, you can just test yourself by totally avoiding milk and milk products to see what happens. Or, you can buy some Lactaid pills. They are the digestive enzyme you are now lacking. Take a pill with any cup of milk or milk product that you consume.

If lactose intolerance is your problem, this should take care of it.

Many people, as they age, stop making the enzyme needed to digest milk. When this happens, you become lactose intolerant.

By the way, yogurt has no milk sugars in it, so you can eat yogurt with no problem.

If you don't have lactose intolerance, then you need tested for other food intolerances/allergies.

For example, the doc also did some other type of intolerance test on me. You drink a drink of some sort and then have to hang around the hospital for 8 hours urinating into your own container that entire 8 hours.

They analyze the urine and know if you have a problem with, I think, fructose.

Anyway, the first gastro I visited did all the big money-making tests on me. (Upper GI, lower GI, endoscopy, etc.). That was it. He said he didn't bother with food allergies!

So, the top notch gastro took up where he left off. He had me do various outpatient tests to figure out which food I was unable to digest.

That is what is happening to you. When you can't digest some food that you have eaten, eventually it begins to putrify in the intestines causing a great deal of gas and, therefore, pain and bloating.

It could be fructose intolerance. That can follow lactose intolerance. If you have fructose intolerance, if you eat too much fruit, the same thing can happen.

So, I ate a large slice of watermelon and had the same experience. Too much fructose in watermelon. To this day I have to watch how much fruit I eat in a day or I will be in trouble.

Many people get diarrhea from lactose intolerance. I consider them the lucky ones. They can make the connection between the milk and the diarrhea.

However, folks with a very large colon like I have cannot make the connection because the reaction happens so many hours later and the reaction is never diarrhea.

Hope this helps you. You need a thorough gastro to put you through all of the food intolerance tests. Or, you can eliminate these foods on your own and see if the pain/bloating episodes stop.

The attacks are scary but the gut will not burst from what I know. I know the abdomen can get huge and the pain is out of this world. It is gas pressure, so get the gut to move and expel it.

I have always had a very slow-moving gut. So, that is why these episodes would occur. How about you?
 
Posted by Lymetoo (Member # 743) on :
 
If it's not lactose intolerance, then take a look at salicylate sensitivity or even Mast Cell Activation Syndrome.

I used to get horrible gut pain .. never could figure it out. Now that I'm on cromolyn sodium for MCAS, I rarely ever get that. Whew. Thank goodness!
 
Posted by Keebler (Member # 12673) on :
 
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While, yes, dairy could be the culprit, mast cells, salicylates, etc. . . .

Might still be wheat or gluten, though, & depending on how you were assessed for celiac, keep in mind that often the typical assessments can be wrong, especially if you refrained from gluten prior to testing.

They were wrong about celiac in my case. The GI scope didn't find damage because - by then - I'd had too many near explosive gut events and I was off of it for some time.

but then, after the test said "okay" I went back to it with dire results.

Turns out - thanks to a different doctor - that the test would not have given correct detail. She did a genetic test instead, one where I did not have to consume lots of gluten prior. And, Bingo - celiac was the problem.

Still, there can be non-celiac glutens issues. And gluten is in so many things under so many names.

If you have Netflix, right now they are running a good documentary.

GMO foods, too, can be the issue. A film about that is in the next links set, too. Genetically Modified Foods, even a trace can put some folks in a true bind, from the inside out.
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Posted by Keebler (Member # 12673) on :
 
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Scroll to end to see link for new film "What's With Wheat?"

& earlier in thread, see links for "Got Diary?" or it may be called "Got Milk?" two articles in the Washington Post by Mark Bittman. Excellent comments there, too.

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=029690;p=0

Excitotoxins; MSG; Aspartame; & "Natural" Flavors (that are not likely natural at all).

GMO foods that destroy the GI Tract; Gluten; Dairy.
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Posted by Keebler (Member # 12673) on :
 
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http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=119808;p=0

Topic: Treatment / Support for Gastroparesis

Many great links here & suggestions that might help various range of gut issues.
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Posted by sixgoofykids (Member # 11141) on :
 
I get that from MSG, including MSG imitators like yeast extract. Maybe keep a food journal so you can see what you've eaten when it happens.
 
Posted by paleogal (Member # 45991) on :
 
I had this for months last year until giving up gluten and (mostly) dairy. Still working on giving up dairy fully, though. When I accidentally eat gluten (like in soy sauce...I messed up a few months ago), the pain/cramps/nausea/diarrhea comes back almost immediately.
 
Posted by sixgoofykids (Member # 11141) on :
 
Yes, paleogal, me, too. I can't eat gluten, but I am fine with dairy. I don't eat much of it though, mainly hard cheeses and not every day.

It can also be histamine or FODMAPS.
 
Posted by Mars Bars (Member # 50329) on :
 
Wow, you guys are great! Thanks for all the info and links.

I'm in a small town and will have to travel to the big city to find a good gastro. Lymetoo. are the MCAS and salycilate tests standard, or is it hard to find a practitioner who will perform them?

These episodes are infrequent--does this mean that the foods I eat regularly are not a problem and only the ones I rarely eat are? Just wondering, because I've kept food diaries and have never been able to pin anything down.
 
Posted by Lymetoo (Member # 743) on :
 
The tests for MCAS are standard, but you have to find a doctor who knows how to diagnose it... also the labs are extremely important.

No real tests for salicylates. Trial and error....elimination diet.

Sigh.
 
Posted by TF (Member # 14183) on :
 
It is very simple to get the fructose and lactose intolerance tests. So, get them to rule out those 2 food groups.

Call a gastro's office and say that this is what you want. Say that you want sent for these tests at the very first appointment. Don't make the appointment unless you are assured that you will be sent to a hospital for these tests after your first appointment.

So, since you haven't been able to determine the offending foods, get tested for those that have tests--MCAS, etc.

A good gastro will help you figure it out. Be sure to ask if the doctor does these types of food allergy tests regularly. You want to see someone who does these quite a bit so there will be no fighting about it and so that you are seeing someone with expertise in this area.

With my lactose intolerance, over the years, I got more and more episodes even though my diet didn't change. That is because over time you make less and less of the necessary enzyme so your intolerance can be triggered more easily.

So, nobody can tell you if you can rule out your normally eaten foods. If it were that simple, you would have already solved the puzzle.

You may only get episodes when you exceed your tolerance level for milk products or fruits or histamine, etc. So, it can be that everything you ate in a given day combined caused the episode and not one single thing.

I hope you understand that this is what can make it complex. I drank milk nearly every day, but I did not get an attack every day. So, it was the other dairy that I ate on certain days that put me over my body's limit.

Same for fruit. I have a limit. If I exceed that limit of fructose, I will get an attack. I at first thought watermelon was the culprit and didn't eat it for years. But, then I started getting sick when I ate a whole lot of blueberries over days and days. So, this is not that easy to figure out.

That is why I suggest you find a gastro who is used to looking for these problems in patients. His expertise will be valuable in educating you and giving you an elimination diet if necessary.
 
Posted by Razzle (Member # 30398) on :
 
Mars Bars,

I just sent you a Private Message with some doctor recommendations...
 
Posted by TF (Member # 14183) on :
 
If you look into fructose malabsorption, you will be amazed at the foods that you have to avoid including rye bread, green beans, cabbage, broccoli, and asparagus.

And, you will be amazed at the small portion that can set a person off.

See this webpage to see how complex it can be:

http://foodintolerances.org/fructose-content-of-food/

This site gives an extensive list of food intolerances:

http://foodintolerances.org/

This shows you why it can be impossible for a person on their own to figure out their food intolerances, especially if you have more than one type.
 
Posted by sixgoofykids (Member # 11141) on :
 
Fructose is one of the FODMAPS. You might even read about a low FODMAP diet.
 


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