I Need Help !

[jorge0464]

Hey guys,

I wish you a Happy New Year.

I really need some help because my last two years have been terrible with gastrointestinal problems that I have had moments where I wanted to end with my life. All began after long antibiotic rounds in 2008. After that, I developed diarrhea and digestive problems. My main symptoms are severe digestive loud noises after eating, high stool volumen, undigested food in stool, flatulence, bloating, sandy stools. It is clear I have mabsorption. I can see the undigested food peaces in my stool. After all these problems, I have taken some tests to identify the causes but nothing is clear so far. I had an Endoscopy with small bowel Biopsy. The visual written report mentioned changes in the mucousal intestinal structure ( something that looks like Celiac ) but the Biopsy din't report Celiac but Gastritis. I don't know if villi damage can be seen without a microscopy and if there is a big possibility of error reading the Biopsy. I mean is it difficult for a Pathologist to identify Celiac ?? If so, how is possible the naked eye report suggested it ?? Another thing is my complete blood work for Celiac came back negative and I was eaten Gluten at that time. No happy with all this, I sent an stool sample to Enterolab. The result came basck positive for Gluten Intolerance but I was not as happy as I wanted with it because my results was only 13 and Enterolab considers negative a number < than 10. So, I was almost borderline with a negative blood work and biopsy. I have read about people having more that 200 with Enterolab. Now, the other part is a have been Gluten free but I can not be sure it has been a perfect Gluten free diet. I may have had some cross contaminaded food. I can eat Gluten without feel any reaction ( at least something I can realize ) For example, if I eat a peace of cake, I don't get diarrhea, skin reactions, headache, etc. As you can see my case isn't clear at least I need a perfect Gluten free diet to see real results. ( please, don't get me wrong I don't eat gluten but following a perfect gluten free diet is complicated and I may have cross-contamination when I have eaten outside ) What is true is my malabsorption is still here and all the assocciated symptoms as well. I don't know if a simple cross contamination or glutened by accident can avoid that the villi heals. I also don't have any prove my villi is damaged since the Biopsy didn't showed it. Sorry for this long post but I want to give you as many details as possible to get your best advice. I am despered because I don't know if I am Celiac, if Gluten is the problem and I am lack of a clear diagnose. Please, where could start my mistake ?? I don't have any other family member with Celiac or anything similar to it. I have listened that people get better after a gluten free month and most symptoms clear up. I have even taken Bee Pollen, Colostrum, and Turmeric. All of them are thought to help the villi heals fast.

P/D: My main point is Could be this possible cross-contamination or accidental gluten intake the cause I don't get better???

Please, help... God Bless all You...

Jorge.

[FooGirlsMom]

A couple of thoughts came to mind as I read your post.

I saw the most severe onset of symptoms right after antibiotic rounds back in 1991/92. I got strep, took antibiotics and it didn't cure it. Had to take a broad specrum antibiotic and that did it. I was left feeling really really bad afterward. I found out later the reason for this is that antibiotics are not particular. They kill bad bacteria AND good bacteria. It very well could be that you are devoid of good bacteria. Have you ever tried taking high quality (and expensive) multi-bacteria probiotics? I had a yeast overgrowth (candida) that could only be cured through probiotics and going on a diet that was devoid of all sugars (even fruit). The only fruit I ate was lemons and limes and the only sweetener I used was stevia. There was no dairy. The grains I ate were amaranth, quinoa, buckwheat, millet & corn. I healed up pretty nicely in about 3 months and the GI problems stopped during that period.

The difficut part of this is that this diet is also devoid of....gluten. That's good if you are gluten intolerant. But you won't know if you really are gluten intolerant until you reintroduce it.

My problem with reintroducing "normal" food is that I didn't realize back then I really WAS gluten intolerant (had never heard of such a thing then.) I was not your typical allergic reaction type with GI problems. My problems with gluten are auto-immune...meaning they present as many things. I get migraines, fibromyalgia-like symptoms, arthritic type pain, swelling/bloating all over the body, unexplained weight gain, irritibility and this past summer MS-like symptoms. I also had hormonal problems back in the early 90 to mid-90s due to all this.

I would have never dreamed in a million years that gluten was my problem. It wasn't until I started showing signs of vitamin deficiency and severe auto-immune response I ever suspected gluten. It was only after talking to a friend with Celiac Disease it even dawned on me. I've been gluten free for over 2 months now and some days I'm 90% better and other days I am 50% better. It goes back and forth as I'm rooting out what else I'm reacting to besides gluten.

Based on when your symptoms started, you could do what I did and go on a strict diet rich in probiotics like I listed above and see if it makes a difference. Gluten may or may not be your issue. If it is, you could be like some of us who don't present with the Celiac-like GI symptoms once your gut has good bacteria back in it. But gluten intolerance which goes auto-immune on you is sometimes worse because it's a things that creeps up on you and you're very ill before you know what hit you.

Hope you find your answers,

FooGirlsMom

[hazelbrown10]

Hi Jorge,

I don't really have much advice for you, but I just wanted to say don't give up! Lots of people on this forum have struggled and finally found ways to feel better. It might take a while but you can always ask questions or even complain here Did you ask the doctor what was going on with your endoscopy? It sounds like something at least is going on. Could you bring the report to another doctor? Are you feeling any better on the gluten-free diet? I'm sure other people will chime in, but until then, good luck! Happy new year

[jorge0464]

Thanks for your answers. I would love to hear from somebody with experience if cross-contamination or eating gluten by accident don't allow the villi to heal. I have eaten outside several times during this gluten free period, and sometimes french fries that I don't know if can have gluten. Mc Donald, Wendy and Hooters. The only thing I am thinking is only eating at home during 2 or 3 months and to prepare the food myself to be sure it is totally gluten free. If during that time, I don't get better, I have to look at another thing.

What do you think??

Jorge.

[mushroom]

I think it is an excellent plan to eat only whole foods that you have prepared yourself for the first few months to avoid the risk of cross-contamination and while you are learning all the hidden places gluten lurks. Eating out is always a risky business at best - I didn't eat out at all for the first six months after I gave up gluten. And fast food places are particularly risky because you are often being served by people who don't even know what gluten is. Yes, I would say give it a go, and be very strict.