Where Do I Go From Here?

[Kelynn]

For about 2 weeks now I haven't been eating any gluten. I had been having stomach issues and felt absolutely terrible for a few months and finally 'connected the dots' and thought it was bread, pasta, etc that was bothering my stomach. Since I have stopped eating gluten I feel like a whole new person- I feel wonderful!

While I was at the doctor (just my regular doctor, not a specialist) he did some blood work and my thyroid levels came back high. My TSH level was 3.8 and he said I had a LOT of antibodies in my thyroid. After I mentioned my theory on the gluten (that I'm gluten-intolerant/possibly have Celiac's) he said that it would make sense, and that my thyroid level and the amount of antibodies are probably because my body has been building antibodies to fight off the gluten I have been eating. So, he did another round of blood tests to see if perhaps I had Celiac's. However, I had not been eating gluten for a week or so before the blood test- he said it wouldn't affect the results. I've also heard that the blood tests are (or can be) pretty inaccurate. He said that depending on the results of the blood test, he may send me off to GI.

The doctor's assistant called Monday and said "Your blood test results are normal so you're all set. Have a good day" So, naturally I said "What do you mean 'I'm all set? Where do we go from here?'" she supposedly checked with the doctor and came back on the phone and said "Um he said to keep eating the same diet." "You mean keep eating 100% gluten free?" I asked. She said "yup!" and that was the end of the conversation. No follow up appointment, no reasoning, etc- as if this isn't a complete and total lifestyle change. You would have thought she told me "oh um just don't eat apples for a few weeks" or something silly like that. Besides, if I wasn't the type of person to go out and research things to no end, how would I even know what "gluten-free" means?

So, I called and made an appointment for tomorrow to pursue this further. Ideally, I would like to ask him for a referral to a GI doctor. I will not go back to eating gluten for fear that it will make me terribly sick again, but at the same time, I'm going to need something (aka a diagnosis) a little bit more firm then "Um, just don't eat gluten." Well, for how long- the rest of my life? With no actual medical reasoning behind it?

From what I understand, the "normal" blood test results mean just about nothing. So, where do I go from here? What's my next step? I just want to be sure that the gluten issue (the doctor and I both suspect it's a gluten issue that was causing my symptoms, especially since they vanished when I stopped eating gluten) is the ONLY issue. I don't want to find out down the road that something else is 'wrong with me' and that it wasn't a gluten issue all along.

Anyhow, any advice will be appreciated. Thank you!

[ravenwoodglass]

If you want to see a GI doctor for an endo you HAVE to get back on gluten. If the thought of that sends shudders down your spine with the thought of how sick it will make you then there is no reason not to just follow your GP's advice and keep up the diet.

Sometimes our body tells us pretty clearly what the answer is even when testing can not. If you feel better gluten free there is no reason not to stay that way. Chances are at some point you will get glutened and your bodies reaction to that will tell you in no uncertain terms that you are doing the right thing. If you wanted you could do a gluten challenge for a week and see what happens, stopping it when you react. Exclusion of gluten, feeling better and then becoming sick again with a challenge is also pretty diagnostic.

[OptimisticMom42]

Yeah that was the reaction we got also... problem solved.... no follow up needed unless you have further problems. If you doubt your dx have a sandwich....... OK nobody said that but that's how it felt.

But on a nicer note. This is less of a change than it seems at first. Eating a rice and corn based diet instead of a wheat based diet makes us just like most of the world.

Welcome to the forum, RA

[Kelynn]

It's probably going to sound strange, but initially I was totally against consuming even another bite of gluten as long as I live because it simply wasn't worth risking it. However, now I'm feeling like I can try the gluten-challenge, and see what happens. If I'm terribly sick (like I have been in the past) then I'll go from there. If I'm sick, but I can deal with it, then it might be worth it in the long run to be able to know for certain what's going on, and to have a diagnosis.

Thanks for your advice and help everyone.