Gluten Free-Wheat Free Diet Eased My Gi Symptoms...then I Cheated

[leo]

Hi, I'm kind of new here, after a salmonella infection with two relapses and a kidney infection, result of I being dehydrated because the last round with the bacteria really messed up my intestines...decided to go completely gluten-wheat free and dairy free. I was already under a gluten-dairy free diet, cutting mostly flour and dairy, but having a hard time reading labels and stuff, but felt better, then cheated, and so I relapsed. I've been gluten free for the third time this year, this time It's been about 6 weeks, and like 2 weeks ago decided to give up everything that might have traces of gluten or wheat and felt so, so much better. Only to cheat a little this week eating tempura and now my stomach is making me pay the price, but with no relapse. It's been a long hard drag since February and it's hard to stick to it when I feel good, but listening to my body has confirmed my suspicion that I might at the very least be gluten intolerant. Here in Mexico the celiac diagnosis is not that common and the labels suck at telling you if there's any gluten, only the obvious offenders have the warnings, but with patience I've been finding alternatives such as rice cakes and corn crackers to cope with the loss of bread, and trail mix as a snack to cope with the loss of pastries. And I'm happy that I can still have chocolate. Because of the kidney infection I'm not allowed to have sugary drinks for a while, but since the beginning of my salmonella treatment I had to give up those and moderate my sugar intake, so it's not a big deal. I used to have sugar related headaches, they have eased, my mood swings have lessend, I still get tired easily and my fingers are not turning blue as often as they did, because my hands are not as cold (I didn't consider all of this a big deal, since I've always been like that). All those changes started when I gave up gluten and reversed when I cheated, but after this last draw they are sticking around since I've completely erased gluten from my diet, and this time I cheated I got lucky, no relapse, tough the the bloating and the pressure has been killing me, but I have little burping, no nausea or weird sounds coming from the intestines, like the last relapse. I think I'll take the blood tests after I get confirmation that the salmonella is gone or at least under control, but I'm not very sure about the biopsy, I'm still searching for a good gastroenterologist, and trying not to become paranoid about gluten, I'm learning not to eat it if I don't know the source (if it is something that might have gluten). The important thing for me is that I'm learning to listen to my body, and finding out that it's not in my head, as most of my friends tell me.

[ravenwoodglass]

It is not uncommon for us to have a trigger stress or illness before full blown celiac appears. I am assuming that your doctors did stool testing for the salmonella and treated you with antibiotics. If they didn't and assumed that your problems were from salmonella without testing first then your issue all along may be celiac as the symptoms can come and go before they become a daily issue.

It is very important that if you want celiac testing to go back on a gluten diet for 3 months or so before testing. If your gluten free or gluten light the tests will for sure be a false negative. Even on a full gluten diet there is still a good risk of false negative with both blood and biopsies.

The only treatment for celiac is the gluten free diet though. So if when you go back on gluten for testing you become very ill again then you have to choose whether to continue with the gluten or just accept that it is not something your system wants and stay strictly gluten free.

It can take up to a week for the antibodies to build up after we injest gluten so if you eat gluten one day you may not have issues for up to a week. That can make it hard to pinpoint what you have eaten that has 'gotten' you.

In the long run it sounds like you have discovered on your own that gluten and you do not get along.

[gluten free overseas]

I am overseas as well (in Asia)--same problems you have. It took me forever to read labels and figure out what foods to eat!! I totally understand what you are going through! One thing about being overseas--be careful about the generic medicines you get there, they are super cheap but usually have gluten in them!!

I live in a country where the hospitals do not even have the equipment to test for celiac, so I went gluten free and then did the entrolab testing when I visited the States (entrolab.com). You can still get a valid result even though you've been gluten free a while, and you don't need to go through an American doctor to do it, you just contact the medical lab yourself (and sometimes, it's not easy to get in to see a doctor when you are visiting from overseas--insurance headaches too!). Entrolab will also check for casein/dairy intolerance too.

Is sugar bothering you and giving you headaches, or is it corn syrup? High fructose corn syrup bothers me greatly, and a lot of people who are sensitive to wheat are also sensitive to corn.

One other thing to think about. Since we are both in tropical countries--tropical sprue has the exact same symptoms as celiac (atrophy of the intestines and everything). You might want to research tropical sprue as well just to make sure that isn't it--are you in a humid area? It's a consideration.

[leo]

It is not uncommon for us to have a trigger stress or illness before full blown celiac appears. I am assuming that your doctors did stool testing for the salmonella and treated you with antibiotics. If they didn't and assumed that your problems were from salmonella without testing first then your issue all along may be celiac as the symptoms can come and go before they become a daily issue.

It is very important that if you want celiac testing to go back on a gluten diet for 3 months or so before testing. If your gluten free or gluten light the tests will for sure be a false negative. Even on a full gluten diet there is still a good risk of false negative with both blood and biopsies.

The only treatment for celiac is the gluten free diet though. So if when you go back on gluten for testing you become very ill again then you have to choose whether to continue with the gluten or just accept that it is not something your system wants and stay strictly gluten free.

It can take up to a week for the antibodies to build up after we injest gluten so if you eat gluten one day you may not have issues for up to a week. That can make it hard to pinpoint what you have eaten that has 'gotten' you.

In the long run it sounds like you have discovered on your own that gluten and you do not get along.

I was diagnosed via a blood test, I've been struggling with GI symptoms for about 18 months before this. Mostly gastritis, but I had a bit of a B-vitamin deficiency, trygliceride deficiency, bloating and I was very nauseous in the morning and sometimes it seemed as if I had swallowed a frog, from all the burping. This mostly got blamed on me drinking too much coca -cola and eating a lot of junk and fast food. The curios part is that I hardly gained weight. I did eat healthy stuff at home, but at school was another story. At the time did not cross my mind to get tested for an infection, but after a couple of very suspicious ear infections (20 years after my last unrelated one) and some stubborn nausea, that was driving me nuts, because I was unable to eat, I decided to get tested. My white count was so low that if I just had relied on the CBC, I was fine, but had the Widal test and there I had it, salmonella. I went trough a course of very strong antibiotics, wich did not kill entirely the bacteria, so I went for a second opinion and ended on a gluten free diet for two weeks, then two more weeks, after it turned into three months because I turned out to be sensitive to gluten in the last two weeks, and went two more weeks on it and got the infection under control. Then I had major inflammation due to eating bread after this, and the diet extended for three months, after that tried again and relapsed, so it went for six months, I still have 3 left. like 3 weeks after the relapse felt good, ate pasta and bread and a week later I had my second relapse. Left gluten again, cheated a little and paid a relatively low price, no relapse. The logic behind it was that I need to have my intestine heal as fast as possible so I won't be taking to many antibiotics. But my intestine has not healed completely, from all the cheating and the relapses. Anyway after the last round wich was a kidney infection finally decided to go totally gluten free and read labels carefully (even tough the labeling system around here sucks). I'm not sure about the biopsy, but about the blood tests I'm willing to go trough them after I'm sure that I wont relapse. I have lost about 10-12 pounds, and 8 inches of my body, I'm having a hard time gaining weight and some problems, like a mysterious gingivitis have not resolved. I'm prepare for a false negative, because I know now that if I eat something with gluten my stomach would react, I did not know how bloated I was after I went trough this. I knew that in a matter of hours I could look as if I were like 6 months pregnant, but didn't know how much of it was already permanent.

[leo]

I am overseas as well (in Asia)--same problems you have. It took me forever to read labels and figure out what foods to eat!! I totally understand what you are going through! One thing about being overseas--be careful about the generic medicines you get there, they are super cheap but usually have gluten in them!!

I live in a country where the hospitals do not even have the equipment to test for celiac, so I went gluten free and then did the entrolab testing when I visited the States (entrolab.com). You can still get a valid result even though you've been gluten free a while, and you don't need to go through an American doctor to do it, you just contact the medical lab yourself (and sometimes, it's not easy to get in to see a doctor when you are visiting from overseas--insurance headaches too!). Entrolab will also check for casein/dairy intolerance too.

Is sugar bothering you and giving you headaches, or is it corn syrup? High fructose corn syrup bothers me greatly, and a lot of people who are sensitive to wheat are also sensitive to corn.

One other thing to think about. Since we are both in tropical countries--tropical sprue has the exact same symptoms as celiac (atrophy of the intestines and everything). You might want to research tropical sprue as well just to make sure that isn't it--are you in a humid area? It's a consideration.

Yeah, this is hard when the doctors don't really know about the desease. About the tropical sprue, I don't think so because I live way north of the Tropic of Cancer, I live in the border with California, so we have a Mediterranean climate. The only thing that might be related to celiac around here is the rise on gastritis and IBS, being blamed on spicy food, but they forget that people eat a lot of white bread since it is cheap. But also because there's a growing problem with self diagnosing and drug ads that promote that when they relate the symptoms to the problem. When I started having GI problems, the first thing that came to the doctor's mind was gastritis, I did my research and found out that usually an underlying condition causes it, and unless you get rid of that, you get rid of it. At the time celiac did not cross my mind or an infection since the first thing I discovered was that I had a B-vitamin deficiency and since it runs in the family and got better after taking supplements. 18 months later I found out that I had a salmonella infection, probably I had it for that long without exhibiting symptoms, because I rarely get fevers or look sick for more than a day. About the sugar, we don't use corn syrup as a sweetener, only in American products we see it. I get the headaches mostly after eating or if don't eat when I'm supposed to, and in the winter because of the weather. After I went gluten free the headaches have eased and I have no urges to eat a lot of sugar, now I can't stand sugary things.