OasisFlyer

Just wanted to say that I went to a GI doc, who says that if I feel sick while eating gluten, and better off it, then I am most likely gluten intolerant. Like I needed him to tell me that He wants me to get an endoscopy to check for reflux damage and he's going to do a biopsy, but I haven't scheduled it yet. He advised me to go back on gluten for a week before the test so that he can see if anything is going on, and I feel like I can't schedule in a week of being sick into my life! I'm terrified to do both (the gluten and the test) so wish me luck!

Well, my allergist is doing the "Celiac Panel" blood test... tried to look up what it entails, but I had already got the blood drawn and turned the paper in, so I don't know exactly what it was. It's a start, anyhow. I'm preparing myself for the almost certain negative it will show. Going to call the GI doc and make my first appointment there regardless. The best/worst part was when he (finally) gave me the diagnosis of Chronic Fatigue Syndrome, told me to cut all caffeine, (I drink one cup at 5 am, on days when I drag myself to work and go to sleep at 9:30 pm, so it's not keeping me up) and my doc says he cut out caffeine in January and his headaches have gone down significantly. I do get migraines occasionally, but worse than that is a chronic daily, never ending headache that just will not go away. He says he is now a lot more sluggish during the day but has less headaches and sleeps better. Coffee's not good for my acid reflux anyway, so I'll just give it a shot. Not sure how the fiancee is going to like it And the doc also said to make sure I get exercise and for my fiance to make me do it.... but he doesn't exercise either! Me and exercise do not get along well. I have never found it enjoyable, never have the energy (or lack of headache) to do it, and I swear I can get into my Wii Fit for 3 days a week, for 2 weeks, then I get the "flu" again and I lose it. This has happened countless times... this "flu" I get every 2 weeks ruins my life

I'm hoping I was eating enough gluten the past few weeks for the test to even have a chance to show anything. I'm quite discouraged by the CFS diagnosis and don't see these head/face aches going away anytime soon

You sound excatly like I did before going gluten free. Within one week I knew I would never eat gluten again. My weak bladder cleared up in the first week too and that was something I never even thought was realted to my mystery disease.

That's very encouraging! I'm having major anxiety about going and presenting this endless list of symptoms to my doctor. The only thing that's helping remotely is knowing my fiance will be there with me, and can back me up when I say I cut "carbs" and felt somewhat better, then reintroduced "carbs" and got worse again, then cut gluten and felt better, then reintroduced and felt worse than I have all along. Well, of course everyone here at the forum has been amazing and that helps too. I'm 3 hours away from my appointment and am trying to stay away from the Xanax!

No matter what he says, or what the bloodwork shows, I'm going to a GI doc, and I'm NOT eating gluten ever again!

Hi OasisFlyer.
These are the celiac disease tests you need to ask for:

Anti-gliadin antibodies (AGA) both IgA and IgG
Anti-endomysial antibodies (EMA) - IgA
Anti-tissue transglutaminase antibodies (tTG) - IgA and IgG
Total IgA level

Deamidated Gliadin Peptide (DGP) Antibodies, IgA & IgG
You also need to have your vitamin and mineral levels checked to see if you are deficient in any.

Thank you for this info, I have it all written down, but I'm wondering how this doc is going to react to me coming in there saying, "This is what I think I have and these are the tests I want." Oh well, if I don't get satisfaction there, I'll move on! He is an allergist, but I was planning on making an appointment with a GI doc anyway (for reflux) so I'll try there too.

I'm trying to prepare myself for that fact, but I feel like I'm going to lose it if they tell me nothing's wrong. I will probably go on the diet regardless, but I know that I will get very little support here at home without a positive diagnosis. I've had a rough week this week and hearing things like "I don't know how wheat can all of a sudden make you sick" doesn't help my mental state. *sigh*

Oh, Mary, I feel the exact same way. If my blood tests come back normal (if the doc will even DO the testing in the first place) I am going to lose it! I'm going on the diet regardless, too, and luckily my fiance is amazing with support, my brother is as well, but my parents... not so much. What you said sounds just like something they would say to me, and it doesn't help the mental state at all. It's good to know there is an online community of support though!