Need Advice From People With Experience!

[mumseyh]

So many of you are so knowledgeable, so I will explain my situation and I will appreciate any advice.

I have had IBS since high school (30+ years ago). Meds have never helped much. I also have been treated for GERD for about 4 years. Last week I was dxed with Barrett's Esopgagus, while having an EGD to check for Celiac. The biopsy was negative. My blood work showed the IgG was 26, and my primary doc said he thinks gluten intolerance might be my answer. The GI doc's attitude was that you either have celiac disease or you don't, and he doesn't believe you can just have a gluten allergy. His exact words were "if pickles made you sick, don't eat them. The same would be true for gluten." My primary doc has been on vacation, and I have not been able to connect with him. I am debating between doing the Enterolab test or just going gluten free. I have a lot of the related problems like anemia. Thanks for any advice.

Nancy

[queenofhearts]

Well, there are a couple of ways of looking at it. If you feel you need a clear diagnosis, you should insist on an enteroscopy with multiple biopsies, & you should keep eating gluten until you have it so that the damage will be clear. But if you just want to feel better & don't particularly have a need to be diagnosed, by all means go gluten-free & if you feel better you will have your answer.

I was diagnosed by biopsy & find it helps in getting my family members fully on board. If you share a home with gluten eaters it takes a lot of cooperation & extra effort on their part to avoid cross-contamination, & sometimes it is hard to get them on board if they think it might just be a whim, hypochondria or whatever. So it depends on how supportive your housemates are. In my case it really helped to have a clear diagnosis.

Of course, you could have the biopsy & have it come back negative. In that case you could still try the diet & you may still derive great benefit from it. So you might say, why bother with all the expense & so on if you are determined to try the diet in any case. It's your call, really.

Welcome to the board, & whatever you decide, you will get lots of helpful information & moral support here.

Leah

[AndreaB]

I had my whole family tested by enterolab. We were non symptom people. Three of us have an active gluten intolerance. Enterolab is painless and accurate. Open Original Shared Link for their site.

[moonlight]

I think I understand what you are going through...I want to tell you our story, it might give you some idea.

in 2005 August, I took my husband to emergency room...it was so scarry, he thought he was having an heart attack.. they said he was having an heart burn/acid reflux/gerd...anyway, for one year, we tried everything to get him better (such as healthy eating, sleeping with pillows, etc). this did not work!

in 2006 April, his stomach and intestine got so worse, at that time there were many stressful things going on...exams, etc. the pain was so bad, we visited many emergency rooms. they couldn't find anything...they kept checking his blood.... his condition got so worse that he couldn't eat anything, even potato made him sick - even water... on May, they said that he was IBS and adviced him to eat healthy(???), get sleep, and do exercise....Anyway, we did everything including a strict IBS diet....also, as we learned that gluten-free diet helps some people with IBS we tried to follow a gluten free diet too (but it was not 100%).. anyway....all these helped but not much, and doing exercise actually got him more tired....neurological symptoms started (such as pins and needles, floaters in his eyes, jerking movements, muscle spasms....etc). he was in a very bad shape - all the vitamin/mineral balance was gone in his body.

in 2006 July, someone adviced us to learn about CELIAC. we read a lot and we did Enterolab test....also we did other food intolerance tests too....The Enterolab results came positive...we became more careful about being gluten-free - He has been gluten-free for 8-9 months. several weeks ago, he had a biopsy, it came negative.

I dont know much about Enterolab but, now, I am glad my husband ordered the Enterolab test and did it. the results made us be more careful about his diet. Some doctors dont think it is valid, and they think that biopsy is the evidence....but, although we have negative biopsy result, the doctor adviced us to continue with gluten free diet! and being 100% gluten free is another thing, very though - especially when the intestine is damaged badly - not only gluten, we excluded many other foods (even raw fruits) and reintroduced them... still, he has trouble with raw fruits, I cook them. But, he is in much better shape compared to this summer. I believe he is getting better... just for the last week, he was having some sympthoms, I am thinking we got a cat and his food might be an issue, so we are working on it.

I hope this helps.

So many of you are so knowledgeable, so I will explain my situation and I will appreciate any advice.

I have had IBS since high school (30+ years ago). Meds have never helped much. I also have been treated for GERD for about 4 years. Last week I was dxed with Barrett's Esopgagus, while having an EGD to check for Celiac. The biopsy was negative. My blood work showed the IgG was 26, and my primary doc said he thinks gluten intolerance might be my answer. The GI doc's attitude was that you either have celiac disease or you don't, and he doesn't believe you can just have a gluten allergy. His exact words were "if pickles made you sick, don't eat them. The same would be true for gluten." My primary doc has been on vacation, and I have not been able to connect with him. I am debating between doing the Enterolab test or just going gluten free. I have a lot of the related problems like anemia. Thanks for any advice.

Nancy

[spunky]

I can see the value of having an official diagnosis; I don't have one myself. But I agree with the doctor who said "If pickles make you sick, don't eat them". If it hurts to hit yourself with a hammer, rather than to have extensive tests that confirm it, it might sometimes be easier just to stop doing it. It's a personal choice we all have to consider, to know how comfortable we can be with or without a real diganosis in writing.

As to the above poster with the cat: when I went gluten free, so did our animals. I found gluten-free cat food and dog food at PetSmart. This way I don't have to worry about getting contaminated from handling their foods or kissing their little snouts, or having them eat and then rub their faces on the furntiure, etc. I'm really amazed at how difficult it was for me to find gluten free pet foods (even the old canned cat food we used to buy had gluten). All of our animals are pretty old now, and since going gluten free, they have seemed to be more energetic and happier, I think. Our cat used to vomit several times a week. Since going gluten free, he vomits only about once every 5 or 6 weeks now. He hasn't caught himself a mouse in about 7 or 8 years, but then he came in to where I was sitting with a present for me the other evening: a wiggling mouse tail dangling from his mouth. He was proud of himself! Don't worry, I promptly took him outside and shook the poor little mouse free.

I think our old animals are lucky that our entire household went gluten free a year ago.

[tiffjake]

JUST BASED ON MY EXPERIENCE (did I type that big enough?? LOL) I went gluten free (largely based on my DOC saying soemthing VERY SIMULAR to yours) and then had enterolab testing. I am satisfied with those tests, but later, my doc wanted to do more bloodwork. I had been gluten-free for a month, and they were "negative". I wish I would have done all of the "offical" testing before I went gluten-free. Now, I can't make it more than 3 days into a "gluten challenge" without setting up camp in the bathroom. I WILL not go back and have the endoscopy, because I can't make it 3 months eating gluten, now that I have seen what a huge difference it makes in my life and how much better I feel.

If I were in your place right now, I would get all of the testing I wanted to get done before going gluten-free. Once you do, it will mess up your blood work and endoscopy results. That is my opinion...