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Diagnosing A Lactose Intolerence
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I'm going to preface everything I am about to say by just pointing out that yes, I am in fact a moron and yes, I am aware of this fact. I just wanted to get that out of the way now instead of later.

So, my known issues with food are first my celiac which was diagnosed by biopsy about a year ago now. Then in June I had to go tyramine free, which is an amino acid in pretty much every food but I avoid the ones that have it in high amounts. This means I avoid pretty much every delicious (non-fresh) meat and a wide variety of fruits and veggies. Then in October I went low iodine when my body decided I should start having DH. Yay!

Okay, now is where things get tricky. I found a raw milk available locally that is not contaminated with iodine through the milking process and switched to this as my exclusive dairy in October. Prior to this most of my dairy consumption had either been hard cheese, greek yogurt, or the ridiculous amount of milk I consume when I get my period. I had also over the time between going gluten free and switching to raw milk consumed less and less dairy.

Sometime over the summer I started having horrid pain in my stomach when I eat popcorn. This is the only food that triggered this pain and it was always exactly in my stomach. I didn't think anything of it and after the second or third time decided to just stop eating it. I assumed it was a corn problem of some sort even though I can eat fresh corn, tortillas and eat foods with corn additives with no issues.

Now, fast forward to Wednesday night. Finally with my rash cleared up I'm ready to see if I can get away with small amounts here and there without triggering my rash again. I head into the store for a box of mac & cheese (the quickie kind) and they are out but have riega cheese packets. My husband and I have long lamented the fact that no one sells just the packets, I check out some reviews online, everything seems good and we have some awesome white cheddar mac & cheese with dinner. A short time later I feel like I have a porcupine in my stomach with about a bazillion rubber bands around it. It actually hurt so bad I couldn't stop myself from moaning out loud.

I was shocked by the fact that I didn't get my explosive D or have a "normal" reaction for me to gluten. Then I started thinking. Maybe it was the corn I had with dinner. So Thursday night I ate a huge bowl of corn. Nothing happened. Then I remember I ate a square of sample cheese at the store, maybe THAT got me. I make another packet of mac & cheese for dinner Friday and cross my fingers. Please!!! let it have been my stupidity for sampling cheese. Sure enough, in no time flat I felt like I was dying again. Again though, it wasn't my "normal" reaction.

So today I actually started thinking about it. Raw milk contains lactase that hasn't been destroyed by the pasteurization process. While it isn't true for everyone, many lactose intolerant people can drink raw milk without any issues. I never would have noticed a reaction during my period because I already feel like a demon is eating my guts. The cheese packets I used are full of whey, not just cheese so they'd have all sorts of lactose in them.

And here is where my monumental stupidity comes in to play. (As if it didn't already by being all hey, lets eat all this stuff and see what happens!!!) I could, in theory, pay a boatload of money to some medical "professional" to do some lactose intolerance test. Or, I could just go drink a huge glass of plain old pasteurized milk, wait for a reaction, follow it with a Dramamine and pray for sleep to take me before I vomit. Is there really any other way to diagnose a lactose intolerance?

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Outside of removing it from your diet for a while and readding? Not that i'm aware of dear :(

That stinks that you can't do that anymore. Is it possible that its something in the cheese packet? I don't do packets i do about 8 (or so) slices of american cheese with milk, cornstarch, and a touch of butter and olive oil.

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There are so many ingredients in the cheese packets that it would be literally impossible to nail down just one. The reason though that I am suspecting the milk is because to be perfectly honest I have long suspected a mild lactose intolerance as milk has always made me just a little gassy. My response to this has always been an eyeroll and "whatever" because I am extremely addicted to milk. Whey was like the second ingredient on the packets. Whey is also where most of the lactose ends up after making cheese, which is why if this is my problem I wouldn't have noticed it as it got worse and worse when I kept eating cheese and was slowly eliminating other forms of dairy.

To be fair, they are produced in a facility that also handles wheat. Normally I would avoid these things but, every batch is tested to be sure it comes out gluten free. I do tend to be rather sensitive so I am not eliminating the possibility it was gluten. Riega's testing standards for testing are the same as Lay's for their gluten free products, none of which I have ever had a problem with and they run wheat containing products on the same lines.

Honestly, the mac & cheese was super delicious for a throw together powdered packet. And as much as I hate hate hate the idea I am really hoping it is lactose because I can do the occasional risk it all and take a pill to eat something I want. I'd hate to have to tell you all that their products are all a farce.

ETA: I should point out that other than raw milk, I have been diary free since October. Raw milk is not the same as pasteurized, and for the case of a lactose test I consider myself to have been, until Wednesday night, dairy free for about two months.

Edited by Adalaide
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I did the "I am an idiot" thing this summer. After 2 months of horrible stomach pain and bloating, I read back thru my journal and there it was - ate cheese, got pain and nausea, ate ice cream - pain and nausea and bloating, sick after eating a bowl of Corn Chex - maybe its the corn???

So after my one functioning brain cell kicked on, I realized hey its dairy so now I use almond milk and buy hideously expensive fake ice cream and I dont even miss dairy anymore. , That was a big shock cause I said back when I was diagnosed celiac that it would be easier to give up gluten than dairy (what did I know, I was just a newbie....) and now I've given up both - and survived

A friend of mine who has a dairy farm told me that unpasteurised milk would be OK and I didn't believe her! I'm going to check that out.

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I understand your angst about trying to alleviate dairy from your diet. Been there, done that, thankfully my gut recovered.

I tried to love coconut milk. It's like comparing silk to polyester, but it can get you through the rough months IMHO.

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Hi Adelaide,

You may have to wait a while and then test dairy again. But test by eating plain hard cheese, not anything with lactose. That way you are eating mostly casein. You could take a couple lactaid pills with it if you want. If the cheese makes you sick, then it is probably a casein issue. If ti doesn't make you sick, keep eating the cheese for 5 days before trying anything else new. If you are still ok then, you could try some regular milk with lactaid pills. When you drink milk you are getting both casein and lactose. If you are ok with the milk when you take lactaid pills, then try it without them next time. If you get sick, then it is probably the lactose.

If the milk with lactaid pills works, then you are good to go. Except for cheesy flavored chemical packets of course. :)

They do make lactose specific pro-biotics too. But I believe you have to take them every day.

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Sweetie, there IS a lactose intolerance test.

Two tests are commonly used to measure the digestion of lactose.

"Hydrogen Breath Test. The person drinks a lactose-loaded beverage and then the breath is analyzed at regular intervals to measure the amount of hydrogen. Normally, very little hydrogen is detectable in the breath, but undigested lactose produces high levels of hydrogen. Smoking and some foods and medications may affect the accuracy of the results. People should check with their doctor about foods and medications that may interfere with test results.

Stool Acidity Test. The stool acidity test is used for infants and young children to measure the amount of acid in the stool. Undigested lactose creates lactic acid and other fatty acids that can be detected in a stool sample. Glucose may also be present in the stool as a result of undigested lactose."

I had the hydrogen test done years ago.

Take a book or some videos to watch.

You will be there for a while.

xxoo IH

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You are making this too easy IH. How are we going to build character and intestinal fortitude in the members if they can just take a simple test? :) Adelaide, sorry, I assumed you already knew about the hydrogen test for lactose intolerance.

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Yeah. You guys and your logic. And doctors. <_< A hydrogen test will cost real money, cheese and/or milk will cost a few bucks and well... I may want to die for an afternoon but lets face it, a doctor will probably screw up the hydrogen test anyway. My celiac blood tests were negative after being sick for 3 decades and and only reason I know what is wrong with me is pretty much either magical happenstance or the hand of God, take your pick. I had to nearly permanently lose half my vision to find out about my pseudotumor (which is still fun to say) when no one said headaches every day, all these other risk factors, maybe we should look into this. I have as much faith in medicine as I do in the idea that there will be a cure for celiac in my lifetime.

I am assuming to casein test I have to have actually be for real dairy free. Like even raw milk free. Yeah, that ain't happening. There are literally no milk substitutes I can have and I am at the point where I have to make pretty much everything. I'm not making fake milk too. Never mind that every time I am adamant about something karma bites my butt. I'm not giving up my raw milk. I can still lactose test myself though if I want to, I just need to stay away from my raw milk for the day before I do so I'm enzyme free.

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You are making this too easy IH. How are we going to build character and intestinal fortitude in the members if they can just take a simple test? :) Adelaide, sorry, I assumed you already knew about the hydrogen test for lactose intolerance.

:lol: I see your point, Gee Eff ....but Addy has been time- tested enough.

She asked "is there a test". I said "yup".

Thought I'd cut to the chase. .

I see from her response though......she "ain't going there".

(can't say as I blame her. )

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I was just checking to see if there was a better way. You know how you'll be watching TV and a commercial will come on and it is some frustrated lady and she says "there has to be a better way!" and suddenly some dude has a magical solution that you can buy for $19.99 and if you call in the next 10 minutes you get 2? Yeah, I was looking for something like that, only free and... well something that didn't involve wanting to die for half an hour. Wanting to die for half an hour still beats trusting a doctor, probably 100% of the time.

Someone please remind me next month after I convince the doctor that regardless of test results I need to be treated for lyme and I'm sick as a dog on the antibiotics that I said that I'd rather be sick than trust doctors. I'll deserve it. :lol:

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The hydrogen breath test for lactose intolerance test will not make you feel as if you want to die.

It's simple. Non intrusive.

Seriously, if you really want to know if it is lactose intolerance, you can just go do it.

It's no biggie, a piece of (gluten-free) cake...cake, who said cake.?.....gimme that cake.......!!!.

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The hydrogen breath test for lactose intolerance test will not make you feel as if you want to die.

It's simple. Non intrusive.

Seriously, if you really want to know if it is lactose intolerance, you can just go do it.

It's no biggie, a piece of (gluten-free) cake...cake, who said cake.?.....gimme that cake.......!!!.

This lady (Addy) has a serious milk issue! Ain't going there indeed!

Oh, no cake for me please!

Well I hope it works out for you Adelaide. Lactaid pills are easy to get so they are not a big problem. No doctor blessing needed either. :)

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Well, I guess I'm not as stupid as I thought. Or maybe I am and I just dodged a bullet? I don't appear to have a lactose problem. I still won't be going back to milk because I'm a huge fan of being rash free but at least I know that I can occasionally indulge in cheese without pills or pain. Which leaves me with what the hell was in that sauce? It wasn't the noodles, or anything else and it got me twice. I do have just a little lingering stomach pains but nothing serious, no brain fog, no typical GI symptoms, nothing neurological. I really don't think it can be gluten. Meh, I'll call it a mystery reaction and keep it logged and shrug it off and hope it never happens again. (I am truly baffled though because I have long suspected a lactose problem.)

Anywho, thanks guys.

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okay, sweets, I reread what you wrote initially and you know what I think don't you? .......but I can't "do" anything from shared facilities. Every time I try it, I get bitten on the behind..Just a thought, but you said:

To be fair, they are produced in a facility that also handles wheat.

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Okay, I can now that I'm pretty confident there is nothing wrong with the Riega cheese packets so.... enjoy. There is also something very wrong with me. :wacko:

It has been just over a week since I ate the first mac & cheese and exactly a week since the second time. I was thinking about it all day and had decided that I was pretty confident that the issue couldn't be gluten because I feel fine. I would be willing to concede that my immediate reaction could change somewhat. There is no way if I had glutened myself twice in that time span that I would be a functioning human being at this point. My memory is fine (well, as fine as usual so about as usual so I'm about as sharp as a bowling ball), I haven't been hit with impossible to conquer fatigue, or any more than usual for that matter, no extra aches and pains, no ataxia, my neuropathy hasn't become suddenly out of control. So, I determined it couldn't be gluten.

Off to the races and I haven't been getting a rash from my milk testing so I made alfredo for supper. Made is a strong word, I cooked chicken and pasta and threw some Classico at it. And now I want to die. The bright side is that this gives me 100% reassurance that I was right, it wasn't gluten. The down side is... what the hell?!?! I made a spreadsheet (it calms me, I'm a freak) of the ingredients of both packets and the sauce. They all have cream, not worried cream milk doesn't cause me issues why would cream? The packets have cheddar and the sauce has parmesan cheese, all of these are simply milk, cultures, enzymes and salt. They all have whey, again it's just milk, albeit leftover milk from cheese and in the sauce it is whey protein concentrate. What jumps out at me is that they all have lactic acid. I can't find anything else I eat on a regular basis that has lactic acid. I was pretty close to whole foods for a few months. Is it possible that lactic acid could make me this horribly ill? Has anyone heard of that before? That's.... absurd! :angry:

(And for the record I did for sure not gluten myself tonight. I have been about 10 times more anal retentive than usual... which is pretty absurd for even me.)

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Never heard of lactic acid being an issue for people ( as it is not the same as lactose intolerance) but maybe someone else knows.

Maybe you should shift focus for a bit......as in what kind of pasta are you eating?

(and just curious, but I thought you were avoiding aged cheeses right now? )

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My neurologist advised that to stop eating such a limited diet and because it is rare that someone will have an extensive trigger list that I begin trying foods and see what happens. He said that the very small amounts I would get from things like sauces and such would be ideal as long as the are the only untested trigger ingredient. Cheese was probably going to be one of the last on my list due to avoiding milk but I tried Daiya and um, no. And.... that is how I ended up here.

When I made the macaroni I used macaroni pasta. When I made the alfredo I used penne. The penne is a certified gluten-free rice pasta and I have been eating it since spring or early summer. The macaroni is a different brand, but is still just plain old rice pasta with far less ingredients than the penne has. I would suspect them due to purchasing in bulk if it weren't for the fact that my extreme paranoia has me buy unopened boxes of pasta rather than buying from the bins, so they can't be contaminated with anything weird from that. Last Thursday, suspected the macaroni out of paranoia I boiled a new batch for lunch and ate a large bowl full of plain noodles (blech!) and felt fine.

This whole thing frankly just makes me want to scream. I'm getting sick for no apparent reason other than it is clearly food related and it isn't gluten. I played my own personal episode of mystery diagnosis for 30some odd years, I thought I was done with this stupid crap. <_<

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. I played my own personal episode of mystery diagnosis for 30some odd years, I thought I was done with this stupid crap. <_<

<_< kiddo, I don't think we're ever done with this stupid crap.

I felt like total shyte this week. I know it wasn't gluten that got me (I think it was one of the "caines" at the dentist office) and I really don't appreciate the ramped up pain I am in and the "how fast can I get to a loo when out in public" thingy, because yeah, I thought I, too was done with that malarkey I endured for 40+ years and so, believe me, when I say "I can relate to your frustration right now" , because, well, I really, really do.

And I know I just wrote a giant run-on mother of a sentence and I don't even care --that's how annoyed I am right now.

:lol: But I'll get over it.

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:lol: But I'll get over it.

You'll get over feeling poorly yes. We all do. We'll get over our frustration too. But will you get over having written that sentence? Don't lie. :P

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I'm setting myself up for a bad night but I think I may have pinned the nose on the donkey! So, out picking up supplies to make massive quantaties of peppermint bark I finally said to myself that I can't live without the current issue of Living Without because it has cookies on the cover. (By the way when I saw pictures of what look just like my favorite ginger cookies my grammy makes I started to cry right in the kitchen.) I was right, I couldn't have lived without this magazine. There is an article in the back (pg 74) about casein. Apparently there are two types, and the dairy I buy from uses cows that produce the rare kind! When I tested the other night it was from a small organic dairy. They also use Jersey cows. That could very well be why I didn't react. So, I made my husband bring me plain old, store brand, generic, from regular cows milk. Ugh. It'll taste like crap I'm sure but I need to know. Honestly, I hope I react. At least I'll know. After 30 years all I want is answers, I don't rightly care what the heck they are at this point.

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They are just called A1 and A2. A2 is the good guy ;)

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You'll get over feeling poorly yes. We all do. We'll get over our frustration too. But will you get over having written that sentence? Don't lie. :P

What sentence? :huh:

:lol:

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Yes, but in the US, finding a diary supply with exclusively A2 truly is rare. Which is why I stated it the way I did. I'm fortunate to be surrounded by so many small dairies that do organic farming with breeds that produce A2. So I can always get Jersey or Guernsey milk non-tainted by A1 if it is truly my problem. I'm currently waiting to get sick enough to want to die. For the record, I could never go back to "regular" milk anyway. Tastes like crap.

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