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GlutenWrangler

Don't Know What's Wrong

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Hey Everyone,

I'm having a really hard time right now, and I was hoping that someone could provide a little insight. I am incredibly sensitive to gluten, and I had been getting glutened from cross-contaminated steak for almost 2 weeks. I then switched to ground beef, which was also cross contaminated. That was another week. I continued to cook bacon in the mornings in the same pan that I cooked the ground beef. I incorrectly assumed that gluten doesn't stick to teflon. That was another 4 days. When I finally figured it out I bought a new pan. By this point, I was having diarrhea like I had before I was diagnosed. I was also dehydrated. When I get glutened, I have trouble tolerating bottled water. I went from poland springs to fiji water and then realized that I couldn't tolerate water period. So I have been drinking gatorate, propel and pedialyte. The problem is that I usually drink 3 gallons of water a day, so it is not easy drinking 3 gallons of propel, pedialye and gatorade. It is tough on my stomach, but it was either that or go to the hospital.

On top of everything I got sick a few days ago, and I still am. I think it is just a bad cold, but at this point I'm not sure because colds don't cause diarrhea, and I'm beginning to think I'm still getting glutened. So I wanted to share what I was eating to see what you think. This is what I have been eating for the past 4 or 5 days. Oscar Mayer bacon, eggs, pepsi, gatorade, propel, pedialyte, potatoes, and Perdue chicken (whole chicken). That's everything, and all of it it supposed to be gluten-free. I have confirmed all of my medications to be gluten-free, except one, but it has never caused me a problem before, so I'm pretty sure it is also gluten-free. I use my own pans and silverware, but I share plates. I take care of the dishes, and each night I wash all the the dishes for the day, gluten and gluten-free, through the dishwasher 3 times. That turns out to 6 hours of washing. I also use lever 2000 soap, soft soap, vive pro for men shampoo, gillette shaving gel, colgate toothpaste, and Neutrogena Norwegian Formula hand cream. I have looked at the ingredients in all of these products and see no sources of gluten, and also never had a problem before.

I'm sorry that this is so long. I'm just completely at a loss and I have no idea what is going wrong. I was hoping someone could point something out that I can't see. Thanks for your help everyone.

-Brian


Celiac Sprue

Multiple Food Allergies

Diagnosed June 2006

Stopped Eating June 2007

IV Nutrition: 6/27/07 - Present

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It sure sounds frustrating. The only thing I can see maybe is the one medication you are pretty sure to be gluten free? I would make absolutely sure that it is. Good Luck

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I should get a reply tomorrow from the drug company. But even if it did have gluten in it, it has never caused overt symptoms before. I'm sure it would have had a major effect on my healing process though. I just assumed that it was gluten-free because it never seemed to bother me.


Celiac Sprue

Multiple Food Allergies

Diagnosed June 2006

Stopped Eating June 2007

IV Nutrition: 6/27/07 - Present

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No possibility of pancreas reaction to too much fat? Just grasping.

What about your dishwasher soap? I know some hand dishwashing soap has gluten (and whey) -- I go out of my way to get gluten-free dish soap.

What else has CHANGED? Also, what do you mean you were CC'd by ground beef?

-Sherri

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I use Cascade Complete. I can't find any information online about if it is gluten-free or not. I assumed it was because I never had a problem.

I get my meat from a local butcher. They are really good there and usually don't have a problem. But I guess someone had something on their hands with gluten in it. Whatever it was, it caused me to get glutened.

Nothing that I can think of has changed, which is why I'm so confused. I noticed that I felt strange while drinking Pedialyte, but it is supposed to be gluten-free. So I really have no idea what's going on.

-Brian


Celiac Sprue

Multiple Food Allergies

Diagnosed June 2006

Stopped Eating June 2007

IV Nutrition: 6/27/07 - Present

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Brian, you need to calm down and think. Doing the dishes 3 times is overworking you, you are stressing yourself out over all this. I think maybe you should try eating simple for a week or so and see if things calm down. Beef, in itself bothers my stomach, the fat content is too high for me. 3 gallons of water a day is a lot of water. My sweetie was told by his doctor that he caused himself to have type 2 diabetes by drinking too much water, maybe you should check that out. Too much of a good thing is not good for us. What med are you taking? Are you taking vitamins too, have you checked them out?

Try eating rice and chicken breast, the dark meat of chicken is very high in fat. Can you have dairy? I used to eat cottage cheese and fruit when my stomach was having fits. It may be a new intolerance bothering you. Is there oats in any of your skin and hair care products? Could it be soy? I can't use products with soy in them, or corn. Maybe you are drinking a rice milk that has barley in it?

I hope you figure this out.


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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Brian, a couple of things are jumping out at me. They might not be a problem, but I think you ought to look at them anyway.

1) Bacon--it's loaded with nitrites, preservatives, and some brands do have gluten (though I assume you've already checked the labels). Plus it may be contributing to to #2.

2) 3 GALLONS of water a day? That's not typical, andis probably unhealthy. It might be stressing your kidneys, or it might be a sign of uncontrolled diabetes. Are you drinking that much just because you're THAT thirsty, or is there another reason?

3) Eggs are a common allergen.

4) Many people here have problems with potatoes, as well.

5)Are you intolerant to fruits and vegetables (sorry if you've already posted the answer to that one somewhere)? You have very little fiber in your diet. I get diarrhea if I don't eat fresh fruits and vegies every day. I don't know if most people do.

Deb has some good advice in her post. If you are not intolerant to rice, I would try plain broiled organic chicken breasts and plain steamed white rice for starters. Then you can try switching over to brown rice, which has more fiber. I'd stay away from beef for a while, as many people do have trouble with it. Then, if you have no previous problems with fruit, I would add applesauce and bananas. and then maybe steamed carrots, and broccoli, green beans, etc.

Good luck, and keep us posted, okay?

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one more thought--Pedialyte is not meant to be drunk by the gallon! That's an awful lot of sugar, salt, and electrolytes--that's going to upset the balance, as well, rather than restore it.. In fact, our pediatrican always told us that it has way too MUCH sugar and salt even for the way it is supposed to be taken, and told us to mix it with water before giving it to our kids.

I suspect that CC is not the problem here. I also suspect that if you are feeling so ill, you are probably not thinking straight. Remember, gluten causes brain fog, as do diarrhea (even when not gluten-related), thyroid problems and DIABETES. Are you alone? DO you have a friend who can stay with you a couple of days to make sure you are not completely off the wall here? Is there a doctor you trust that you can see IMMEDIATELY? I'd hate to see you end up in the ER (and then eating hospital food) because of this.

You know what, I'm getting really worried about you. Keep posting updates, please!!!!!

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I second everything fiddle-fadde posted +

When I get glutened, I have trouble tolerating bottled water. I went from poland springs to fiji water and then realized that I couldn't tolerate water period.
but anyway......

first off 3 gallons is obsessive.... most people (myself included) don't drink as much as we should but that is way way too much... it will dilute your electrolytes which upsets your stomach, makes you ill and can cause D....

So I have been drinking gatorate, propel and pedialyte. The problem is that I usually drink 3 gallons of water a day, so it is not easy drinking 3 gallons of propel, pedialye and gatorade. It is tough on my stomach, but it was either that or go to the hospital.

Well I doubt it was either that or the hospital unless you have some other condition your not mentioning....

However that would be enough to upset ANYONEs stomach.... the fact you went from diluting your electrolytes to what must have been an overload is doubly going to upset yopur stomach, and these are also used as a purgotorive ... meaning they are meant to give you D.

We ALL get glutened and have to recover.... this is not a good way....

what works for me is home made chicken soup from scratch, but that's just me... I also make plain vegetable soups... etc. and thee naturally restore your electrolyte balance... and the electrolytes are in a far better form to be adsorbed and not upset your stomach...


Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

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I know that 3 gallons is a lot of water. The last thing I want to be doing is drinking that much water. But if I don't, I get dehydrated. I've been doing it for a year. Since going gluten-free, I don't get dehydrated as much. I also drink gatorade to keep my electrolytes in order. But believe me, I wouldn't be drinking that much if I didn't have to. What I meant by "it was either that or the hospital" was either drink the gatorate, pedialyte and propel, or go to the hospital for rehydration. From what I have read on this forum, many people have had to go to the hospital for rehydration. Dehydration seems like a common theme. Also, I was only drinking 2 Pedialytes a day. I drank mostly propel.

I know my diet isn't great either, but the point is that this has been my diet for a long time. It has never bothered me or caused me to feel this way. I am intolerant to bananas, but I know I can eat oranges and lemons. Yes, I like to eat whole lemons. I'm casein intolerant also. I use soy butter with no problems. I think rice bothers me but I'm not totally sure. I'm trying to get food allergy testing done to find out.

The reason why this is perplexing me so much is because I'm not doing anything different, but I'm feeling horrible. The water and diet aside, I shouldn't be feeling this way without changing anything. I am feeling a little better today. For the past 4 or 5 days it took me over and hour to fall asleep. Last night I fell asleep right away. The only thing I did differently yesterday was not drink any pedialyte and I tried bottled water again. I think the pedialyte bothers me somehow. Anyway thanks for the replies. I appreciate your concern.

-Brian


Celiac Sprue

Multiple Food Allergies

Diagnosed June 2006

Stopped Eating June 2007

IV Nutrition: 6/27/07 - Present

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I know my diet isn't great either, but the point is that this has been my diet for a long time. It has never bothered me or caused me to feel this way. I am intolerant to bananas, but I know I can eat oranges and lemons. Yes, I like to eat whole lemons. I'm casein intolerant also. I use soy butter with no problems. I think rice bothers me but I'm not totally sure. I'm trying to get food allergy testing done to find out.

it doesn't surprise me that if as someone pre-disposed to intolerances you get problems sticking to the same diet for a long time.

Anyway 3 gallons is still an aweful lot.... IMHO worth having checked out all by itself...

Dehydration seems like a common theme. Also, I was only drinking 2 Pedialytes a day. I drank mostly propel.
A gallon or at most a gallon and half should be more than enough... you really can kill yourself drinking too much water... its not a myth...

Also any 'decent' water is fine, I would stick well away from any "special waters"... at best its a marketing ploy at best it might upset you... but the shere amount of what your drinking is going to mean anything in it aggravates you you're going to be aggravated a lot.

The reason why this is perplexing me so much is because I'm not doing anything different, but I'm feeling horrible.
Drinking 3 gallons of water a day for any length of time is bleeding your body of electrolytes and water soluble vitamins... and your diet is a bit limited....

When something isn't working you seem to jump the other way and oversteer.... then oversteer in the opposite direction.

I realise its frustrating but small changes would be better.... cut down in the water and just have 1 bottle of Pedialyte cut 50% with water over the day for instance....

I get my meat from a local butcher. They are really good there and usually don't have a problem. But I guess someone had something on their hands with gluten in it. Whatever it was, it caused me to get glutened.

For me a glutening can last several weeks.... not constant but it gradually settles down over the weeks.

So you got glutened and it knocked you for 6 but probably your confusion added to you doing other things... after glutening my stomach reacts to tiny things, not necassarily gluten... and my other intolerances (usually not worth bothering about) get much worse.

I think you just need to moderate everything and let stuff settle down. The main worry is you drinking 3 gallons a day... try measuring your poop (yeah gross I know) but estimate ... what feels like a lot of D and is painful usually is much less volume than you think!

On average 8 pints is meant to be healthy a day... but 6 is perfectly fine... so start off at 6 .... and for each pint of D (which is really a lot) drink another pint.... HOWEVER the more you drink the more volume you weill pass.... and the more nutrients it will leach out too.

Once again the keyword is moderation.... if you drink 8 pints a day in a temperate climate you are never going to be hospitalised through dehydration through D (leastwise in summer). The people this happens to are people who drink less than a pint AND live in hot climates etc.

Moderation is the key , just because something is good for you doesn't mean more is better. Indeed in most cases more is usually as bad as too little.


Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

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I'm still curious about the dehydration thing. Is it because everything goes through you and you get diarrhea? Or are you vomiting? Otherwise, what makes you think you are dehydrated? (I'm not challenging you here, you know your own body, I'm just trying to understand how you got to that conclusion.)

Have you been checked for diabetes? gfp is right, 3 gallons a day is easily enough to cause severe problems....

Anyway, glad to see you're still posting.

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theres been times when i've gotten sick from gluten, just from a little bit of contamination, that lasted i think it was 10 days. like i told you in my PM, i'm very very sensative myself. So it could just be that. Hope we can chat soon.

~ lisa ~


...Flames vs. Panthers, and Lifehouse, were best experiences OF MY LIFE!!...

...26 years old...

...Look in my forum profile for ways to read my public sports articles...

R.I.P. Uncle Gus (Sept. 21, 1971 - Oct. 2, 2004) ... R.I.P. Baba (Oct. 12, 1911 - Feb. 28, 2006) ... R.I.P. Uncle Lawrence (Aug. 7, 1943 - Jan. 4, 2009)

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I have to say I agree completely with what the other posters have said. On the water issue if you have not be checked for diabetes please do so, if you feel dehydrated and a bit off that is reason enough to check. I had diabetes take me by surprise. I was tired and irritable and thirsty and peeing alot but never even thought to check it. With my size and weight and the fact that I am not a sugar junkie it was a surprise to both my doctor and me. Do check it out. You should also recheck your meds especially if they are generics. The binders can be changed at any time and it is not something they would let you know.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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I know all about water toxicity and the dangers of drinking too much water. But unless I'm sweating profusely all day and drinking a ton of water at once with no electrolytes, there's no possible way I could die. I'm drinking this much fluid over a 12 hour time frame. My celiac disease came on in full force after a stomach virus. From that day on, I had problems with dehydration. Yes, there were some days where it could be blamed on severe diarrhea, but generally that's not the case. When I get glutened, my diarrhea gets worse, but the total volume is much less that a normal day. I attribute the dehydration to "back-up" in my colon. The water that I drink is diverted to my colon instead of being properly absorbed. Maybe this is because my body wants to rid itself of the ingested gluten as fast as possible. I don't know. But my old gastroenterologist completely agreed that this was what was going on. I have been told by 2 doctors that drinking 3 gallons a day is safe for me, as long as I add some electrolyte drinks into the mix like gatorade. Now, do I need this much all of the time? Probably not. When I'm not getting glutened, I'm sure I could drink less. And I am going to cut down as soon as this episode is over. I read a post on this site a while back about drinking large volumes of water. A med student explained that the body adapts to how much water that you give it. If you give it 3 gallons a day, that's what it needs to maintain homeostasis. In order to get down to a normal level, it has to be done slowly. Just like weaning off a drug. So that's what I'll do.

A strange thing happened today. I was feeling pretty good when I woke up. The I cooked my food and started eating. I got through the bacon, still feeling good. Then, right when I started on the eggs, I felt different. After I finished eating them, I felt a little shaky and had some anxiety. The same thing happened yesterday. Maybe because I was so badly glutened I'm having a problem with eggs. Anyway, I made an appointment with a nutritionist today. I'm sick of trying to figure this out by myself. I thought I would be feeling much better than this after 7 months.

-Brian


Celiac Sprue

Multiple Food Allergies

Diagnosed June 2006

Stopped Eating June 2007

IV Nutrition: 6/27/07 - Present

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It's certainly ;ossible that you might have developed an intolerance to eggs. You don't need a nutritionist to tell you that (though you might get some good insights from a nutritionist); just skip the eggs for a day or two and see if things are better. And although I dearly love bacon, I've gotta say--with the problems you've been describing, it's not a healthy or wise choice for you to be eating it at this time. Hopefully, you'll be able to add it back into your diet at a later time, especially if you can find Coleman's brand, which is nitrite-free and preservative-free. Unfortunately, like all bacon, it is tremendously high in salt--which might not be safe for you at this time.

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Sorry you're not feeling well. For some reason something that really jumped out at me was the Pepsi. Have you considered eliminating that? It can certainly contribute to dehydration (and many other problems - even if you don't drink very much of it). Beyond that, taking all the other chemicals out of your diet and eating only natural foods for a while might really help you pinpoint the problem.


"Let food be thy medicine, and let thy medicine be food." - Hippocrates

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I know my diet isn't great either, but the point is that this has been my diet for a long time.

-Brian

Exactly. A poor diet for a long time can suddenly make you really sick, even if food allergies and intolerances aren't involved. I hear a lot of people say things like, "I know I don't eat healthy but I can't figure out why I'm sick because I know I'm not getting gluten." There are just so many other factors about food to consider. Just a thought. Hope you figure it out soon.


"Let food be thy medicine, and let thy medicine be food." - Hippocrates

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Since you are prone to food intolerances and eat eggs daily, and since eggs are a common allergen, I would highly suspect the eggs.

Have you considered that the salt in the bacon may be causing your excessive thirst? Stores like Wild Oats have uncured bacon and sausages that may be a better option for you, also a lot healthier.

I felt much better when I ate simply for a while -- fruits, veggies, meat, eggs (not a good idea for you right now), rice (including Tinkyada pasta), and potatoes (though some are intolerant to them). This might help you.

I think it's a good idea to cut down on the water slowly. And I agree that you should be tested for diabetes.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Aside from the bacon, I eat a generally fresh food diet. I usually eat bacon, eggs, potatoes, and filet mignon. That was my staple diet for a very long time. I may be deficient in fruits and veggies, but that's not too difficult to fix. Although bacon is high is sodium, I don't think that it's the culprit in my dehydration problem. I will definitely look into Coleman's brand bacon. I need to make sure I eat calorie rich foods. I'm only around 130 pounds and I'm 5'10". I'm sure I have other food sensitivities, but it is hard for me to tell if the reaction is delayed. That's why I want to get tested for food allergies, but my allergist wouldn't do it. I'm not saying it's a perfect science, but it might give me some direction. I didn't eat veggies for a long time because I couldn't tolerate them. I had a salad a few months ago without any negative effects, so I'm sure I can tolerate them now. I haven't had a physical for a while, so I'll get that done and see if I have diabetes. But I think seeing a nutritionist will help to guide me in the right direction. But that's not for a week and I have no idea what to eat for right now. I thought about doing a clear liquid diet for a day, but I don't think I could handle it. I already too thin. I'm thinking about cutting out the eggs tomorrow. I just don't know what to eat in their place. I'll just see what happens.

-Brian


Celiac Sprue

Multiple Food Allergies

Diagnosed June 2006

Stopped Eating June 2007

IV Nutrition: 6/27/07 - Present

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Sometimes eating the same thing over and over can become an allergy to it. What about sulfites? They can have that reaction also. I at one point thought that was what all my problems were caused from. I still can't handle them. Wine makes me crazy for one. Just a thought. Hope you figure it out.

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At this point, I'm convinced I have some type of infection. I have a gnawing pain on my side that radiates into my back. It is more painful between meals. I also have a loss of appetite. Those are symptoms of an ulcer. Maybe I have an H. Pylori infection. I used to have erosion in my duodenum, and this feels just like that. A little worse though. It takes forever to get an appointment for an endoscopy. I'll give it a few days and see how I feel. I have a cold but that wouldn't cause such severe GI symptoms. It could be the flu but I doubt it. I know I have to change my diet, but I don't think that it is causing these problems at the moment. But who knows I could be wrong.

-Brian


Celiac Sprue

Multiple Food Allergies

Diagnosed June 2006

Stopped Eating June 2007

IV Nutrition: 6/27/07 - Present

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At this point, I'm convinced I have some type of infection. I have a gnawing pain on my side that radiates into my back. It is more painful between meals. I also have a loss of appetite. Those are symptoms of an ulcer. Maybe I have an H. Pylori infection. I used to have erosion in my duodenum, and this feels just like that. A little worse though. It takes forever to get an appointment for an endoscopy. I'll give it a few days and see how I feel. I have a cold but that wouldn't cause such severe GI symptoms. It could be the flu but I doubt it. I know I have to change my diet, but I don't think that it is causing these problems at the moment. But who knows I could be wrong.

-Brian

Trust me Brian, I know what it is like to be clueless. Find some of my older threads to find more detail...but everyone on this board knows that since Jan 28/2006 (i only remember the date because it was that random) anything I've been eating, no matter how gluten-free, has given me pains. The more I eat, the more it hurts, and its usually during eating that the pain worsens (some days I can FEEL my stomach instantly reacting to it). It's always in the lower right side basically between the hip/back area. The diarrhea has been worse all the year too. I got checked for a bacterial infection, and I think 3 other infections/viruses through stool samples and nothing showed up in those.

I know this dont answer your question, does it? :lol: . Guess I'm just saying I HOPE that YOU can get to the bottom of your problems and soonnn. :)

~ lisa ~


...Flames vs. Panthers, and Lifehouse, were best experiences OF MY LIFE!!...

...26 years old...

...Look in my forum profile for ways to read my public sports articles...

R.I.P. Uncle Gus (Sept. 21, 1971 - Oct. 2, 2004) ... R.I.P. Baba (Oct. 12, 1911 - Feb. 28, 2006) ... R.I.P. Uncle Lawrence (Aug. 7, 1943 - Jan. 4, 2009)

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