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GlutenWrangler

Don't Know What's Wrong

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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

Brian, it doesn't matter what I get be it a cold or whatever, when my GI tract is inflamed from glutening it manages to express itself in my GI tract. The same goes for large changes in diet, normally spicy foods don't affect me at all but when I'm glutened they do, same with anything acid like dry white wines or cider (or pepsi). Same goes for me taking an asprin, stright to my stomach when I'm glutened.

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.

Did your old GI say this was short term or something to do for 6 months or more?

Also you said you switched to electrolyte drinks ... after drinking the water... I realise you can't post every detail but did you mean this exactly as you wrote?

In summary, everyone is trying to help you figure what's going on. However you don't seem to be ready to address the issues.

The first is you probably should get tested for diabetes...

Secondly adding some variation ointo your diet, especially vegetables (but carefully I'll cover this later) and cut out the bacon for now because of the salts and preservatives. Some plain pork chops etc. might be a little step you can take.

I agree you should get checked for h. pylori, if it is this then be aware the antibiotics WILL upset your stomach and give you D.

and slowly reduce the water, aim for 2 gallons then 1.5 but stick away from the "fancy stuff" with added this and that.

Since you can tolerate oranges add some OJ as part of the water, usually diluted 50% BUT don't go overboard or this will give you the runs as well. Start with a half glass topped up with plain old water (preferably when you have something in your stomach) ..

Your water may well being diverted, as you point out the body adapts.... but perhaps its only diverting the water because it doesn't know what the heck to do with that volume! I find it hard to beleive your GI meant for you to drink 3 gallons a day for 6 months... you might also consider wether they meant for you to drink 3 gallons a day... or if they did what a lot of Dr's do and suggest a quantity expecting you to drink less. If as you say they were worried at the time about dehydration then they may have figured you were drinking far less than you needed and suggested a quantity they didn't really expect you to maintain, especially for 6 months.

Now regarding vegetables.... avoid the potato's and nightshade group since lots of people are intolerant... and tomatoes and things high in salycilic acid again aniother irritant.

Like I said earlier, this sounds like you got glutened and your reaction to it has extended the GI effects. I'm not saying that's what it is BUT its certainly a possibility and one your not helping yourself with.

I have given myself food issues in the past, I know what it can feel like

At one point I was literally so scared to put anything in my mouth I was hardly eating and my weight plummeted .... I don't actually weigh myself but I usually take 30" waist trousers... (I'm 5'10 and 39 ) but I can go up to 32 sometimes if I'm not careful what I eat and on this occaission I dropped down to about 26" ... everyfood I saw terrified me and I had begone to associate eating with being ill. Mostly I just nibbled on pure corn tortilla chips...

... anyway, I finally worked out the tortilla chips were contaminated. Much later the same tortilla chips brand carries a label warning that gluten might be present... but that's another thread.

However when you say you couldn't tolerate veggies this seems another over reaction.... sure switching to a veretarian diet might trigger a GI irritation if you did it overnight but adding limited amounts of vegetables seems unlikely ... perhaps it could have loosened up your colon a little etc. but how long did you try for and did you introduce them slowly and with moderation...

As I say keep away from known intolerance triggers, so I would minimise soy as well BUT SLOWLY ... if your consuming a lot of soy protein then it messes with your eostrogen levels, yes even for a guy!

This brings me to the conclusion....

The body is a finely tuned machine, too much of anything or too little and it's no longer running as it should but it will still try and adapt. The only natural element known to man with no function known in the human body is mercury, everything else, even arsenic is NEEDED by the body to some extent.

To make a auto parallel though its like your isfiring on a cylinder and so you mess with the distributer and it doesn't work so you try the electical system and then something else... and in the end it turns out to be a blockage in a fuel line. However the problem at this point is you already jiggered about with the timing and 10 other things so when you finally replace the fuel line its still outa balance.

When you make changes, make small ones and wait ... don't say (to yourself) I tried vegetables for a day or to but they made me worse, instead add a little and be prepared for a small hickup while your body adjusts .. give it at least a week per vegetable you add... if it doesn't work after a week then backoff and try a different one.... but adjusting other major things at the same time is just going to confuse you twice over... it confuses your body which tries to adapt but it also confuses your mind which is trying to make sense of all this.

In the end I think we have a very primordial instinct about food which is designed to stop us poisioning ourselves but can cause us to massively over react....

I have been there and developed an eating disorder where I was terrified of all food .... I lost perhaps 1/3 of my body mass ... and it probably did me long term damage......

oh, and try cutting the eggs for a week or try eating only the yolks...

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Yeah getting checked for kidneys is a good idea too. I cant remember reading this, but how is your blood pressure?

~ lisa ~

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Lisa,

Your post was definitely helpful. It helps to know that what I'm dealing with isn't toally abnormal. As for the kidney question. I have all the experience in the world with kidney problems. I have an extremely rare disease called Loin Pain Hematuria Syndrome. It causes chronic pain and bleeding in my right kidney. The disease is so rare that only a few thousand cases have been diagnosed in the entire world. It is kept under control with pain medication. I take Vicodin every day for it. But that being said, it isn't what is causing the pain that I have now. The pain from the LPHS and also kidney stones that I have had is much different and much more severe than the pain I had described in my last post. The pain I have been having recently is definitely in my GI tract. It burns when something hot or acidic hits a certain spot while I'm eating. My blood pressure is good, but I also take Inderal to prevent migraines.

GFP,

First let me just say that I am ready to address the issues. Believe me, the last thing that I want is to continue feeling this way. I am going to get tested for diabetes, I am going to add some variation to my diet, and I am going to try to cut down on my water consumption. But for right now it isn't easy to add variation to my diet when I can barely eat. All I am saying is that I don't think these problems are being cuased by my diet. I think it is caused by some sort of infection. I am very sick at the moment, with chest congestion, head congestion, fatigue, sore throat, muscle aches, nausea, and stomach pain. I'm guessing that this is why my GI tract is so messed up right now, along with the inflammation from being glutened for so long. I ate some eggs again today, and had no adverse effects, so I doubt that they were the problem. To address the water question, no, the doctor never gave me a time frame for drinking that much water. The doctor understood that I was really drinking 3 gallons. At first he showed concern, but when I told him I add a few gatorades throughout the day, he said it was fine. That's what I meant by adding electrolyte drinks. Each day I drink 13 24oz waters and 5 20oz gatorades. At the time when I spoke to my doctor about it, I hadn't been diagnosed with celiac disease yet. He had diagnosed me with IBS at the time. It wasn't until later that I understood that dehydration was common in celiac disease.

But the main point here is that I know I have to make changes to my diet. I said that I couldn't eat vegetables in the past, but I can tolerate them now. I just don't eat them. But that's why I'm seeing a nutritionist. I know I need to eat a more balanced diet. But my main problem is my extreme sensitivity to gluten. I don't know what to eat or where to get my food because I ALWAYS have cross contamination issues. I am always getting sick from cross contamination. My mother, who also have celiac disease, can eat the same things that I eat and never have a problem. I like to be able to eat filet mignon every day, which is a nice dinner, but I haven't been able to get any recently that doesn't cause me to get glutened from cross contamination. The same goes for ground beef. I understand that some people are more sensitive than others when it comes to gluten, but it is getting ridiculous at this point. In the beginning, when I first went gluten-free, I felt great. But back then, I was still making a lot of mistakes with the diet, even though I didn't know it. But back then, I wasn't near as sensitive as I am now, so it never bothered me. It seems that I become exponentially more sensitive with every bit of healing that I achieve. I just don't know at what point I can depend on what I'm eating. But if I could depend on what I eat, I wouldn't have to worry about dehydration and drinking 3 gallons of water a day. So overall, my extreme sensitivity is my biggest problem.

-Brian

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