Need Advice...long

[Suprmom]

I need advice about what to do now.

History...I have always had some issues that include constipation, brain fog, depression, constant fatigue, occasional diarrhea, sometimes getting "food poisoning" when no one else would, piercing stomach pains, gas, but mostly always feeling sick for no reason. When I was a teenager I saw a doctor who told me it was all in my head and I needed to exercise more (I was very athletic at the time) and sent me on my way. I also had 2 er room visits because of severe, can't walk, stomach pain and both times when I started to feel better they sent me on my way with no explanation. I figured out on my own that I was lactose intolerant and for the last 10 yrs or so I have thought that my lactose intolerance is the cause of my issues and have at times gone to extremes to avoid even small amounts of dairy. When my "lactose intolerance" was at it's worse I did avoid most bread because I thought the dairy in it was making me sick. When my son was 6 months we discovered he had multiple food allergies that included wheat, barley, rye, oats and a few others. His gluten allergies also give him severe diarrhea, which is common with food allergies, but it would continue for days, which is not common with food allergies and his other allergies do not react this way. Several of the allergists we have seen suspect he is celiac but when we saw the GI doc they dismissed it all as FA's. So over the last 3 yrs we have become a gluten free home. My lactose intolerance doesn't bother me any more except when I drink/eat huge amounts of dairy. All of the issues I was having have either gotten better or only bother me on occasion. I have suspected celiac for myself since I looked it up for DS but have dismissed it because I thought maybe I was over reacting with all the new food issues in our life.

Recently... I have started having severe diarrhea (sometimes with a burning sensation in my gut) almost everytime I eat out (remember we have gluten-free home) and the other times I have stomachache, backache, headache, and just don't feel well. I saw the doctor who ran a blood test (I don't know what type) that came back negative. Short story HE said I have IBS and it's probably milk . He did give me a prescription for dicyclomine. I asked him alot of questions that he didn't answer and I feel he has dismissed me as a crazy lady. I won't be going back to him.

Since I saw him I decided to try a few weeks without any gluten and then gorge, a little more discriminately, and see what happens. I went one week without any dairy in any form ( I have dealt with FA's so I feel accurate in saying this) and then had a BIG cup of milk. No problems. It has been at least two weeks COMPLETELY gluten-free, and years of mostly, I ate at least a dozen whole wheat thins and some cake tonight. Within in a 1/2 hour I had headache, brain fog, felt nauseous, stomache ache, and just felt sick. **TMI ALERT!** It has been a few hours and I am now having diarrhea. I am convinced that I have a problem with wheat. I am completely kicking myself for not figuring this out years ago. I do not want to go through the pain anymore so I won't be eating anymore wheat.

So what do I do now. Do I just suddenly tell people I'm gluten intolerant? I know I'm going to get flack for trying to compair with my DS even though I really am not like that. What I really want is some sort of diagnosis from a doctor. I know this won't change anything but I feel that it would give me some peace of mind and put some weight to my words. So I will be trying to find a doctor who will listen to me. Do I go straight to a GI specialist or do I just find another general practitioner? Should I call my old doctor and ask for a copy of my test results? I can do that right? I don't even know what test he ran. Speaking of which, since I have been mostly (I would say ~95% of the time) gluten-free, what test can they do that would answer anything? Will the dicyclomine really help? Seriously what should I do now?

One upshot to all this is that I now feel vindicated. All the times I've sat on the couch or in bed and told DH that I feel sick now makes sense. Since he's the one who has pushed me to look into celiac disease for myself I'll forgive him for not believing me back then.

[Mrs. Smith]

Yeah you sound alot like me. I thought I had dairy intolerance forever. My wonderful Dr. says it is one of the manifestations of celiac. I was really sick all through my 20's with D and had infertility. I and my DR through process of elimination dx'd me celiac. I tell people I am so they just go with it. My dr thinks its the root of all my issues. Thanks to him I am trying to heal. I could never go through a gluten challenge so he went ahead and dx'd me. You could have the genetic testing, or get the enterolab test off the internet.

[Libbyanne]

So what do I do now. Do I just suddenly tell people I'm gluten intolerant? I know I'm going to get flack for trying to compair with my DS even though I really am not like that. What I really want is some sort of diagnosis from a doctor. I know this won't change anything but I feel that it would give me some peace of mind and put some weight to my words. So I will be trying to find a doctor who will listen to me. Do I go straight to a GI specialist or do I just find another general practitioner? Should I call my old doctor and ask for a copy of my test results? I can do that right? I don't even know what test he ran. Speaking of which, since I have been mostly (I would say ~95% of the time) gluten-free, what test can they do that would answer anything? Will the dicyclomine really help? Seriously what should I do now?

One upshot to all this is that I now feel vindicated. All the times I've sat on the couch or in bed and told DH that I feel sick now makes sense. Since he's the one who has pushed me to look into celiac disease for myself I'll forgive him for not believing me back then.

[Suprmom]

So I decided to just post under here rather than explain my situation again. I have my first appointment with a GI doc this week. I am really nervous that he is going to dismiss me like my General practitioner did.

What do I need to know? What tests should I ask for? What advice can you give me for explaining to the doc. Does anyone know of gluten intolerance that is caused by avoiding gluten (I know it is wishful thinking but my mom planted the idea in my head and now I gotta know.)

Update: Since going completely gluten-free I feel great!!! No more bathroom issues even with eating other foods DS is allergic too. I am completely convinced I am wheat, maybe gluten, intolerant. I'm thinking DS's FA's are a blessing in disguise. The only times I have had issues is after drinking soda I feel exhausted and (dumb moment) after communion at church I had a stomach ache and felt exhausted for days but no D.

[tarnalberry]

if you need an official dx, you'll need to go back on gluten for at least 6 weeks. (plenty of gluten, not just a little bit.) but there are reasons (insurance wise) that you might not want an official dx. It sounds more like you just need confidence in your own conclusions. Well, build that confidence, then, don't eat gluten! Remember that your anecdotal, empiric tests, are still valid tests. Believe in what you have found out for yourself. Who cares what other people think - you have to live with the symptoms! (And if you don't compare yourself to your son's allergies, others probably won't either.)