Well I had my consult today.  The specialist looked at me and said "I do not know why you do what your do."  I said, "You mean taking wheat out of my diet."  He said, "Yes, you have to be diagnosed first."

Does that make any sense?  I told him wheat bothered me but I guess that didn't matter because I did not have a diagnosis medically yet.  

However, he told me that any grain but rice contains gluten and I should remain gluten-free until the test in January for which I will also be tested for Celiac Disease.

Well, the good news is I have gained about 3 pounds in 3 weeks and now weigh 91 instead of 88.  Things are looking up.  I incorporated mozzarella cheese which I can tolerate and yogurt which is ok in limited amounts.  I can also do ok with soaked almonds and walnuts and almond butter.

My ultra-sound is in November just to rule out the gallbladder.  So with all this work-up, I should and hope to get a diagnosis that will give me a reason for losing so much weight in such a short time because of stomach pain.

great news!

Thank you for keeping up updated, luana.  I'm glad you have found a few foods that your digestive system can tolerate.

I eliminated all gluten containing grains from my diet about 1 1/2 years ago and have felt so, so, so much better, even though my blood tests were negative for celiac.  Sometimes our bodies know best.

Glad you're making some progress.

Quoted from luanaflacco

 The specialist looked at me and said "I do not know why you do what your do."  I said, "You mean taking wheat out of my diet."  He said, "Yes, you have to be diagnosed first."Does that make any sense?  I told him wheat bothered me but I guess that didn't matter because I did not have a diagnosis medically yet.

Sometimes doctors just aggravate the p outta me............I'd say he had on his "I'M GOD" shoes today. If THEY dont make the diagnosis, it's not right. Good for you for getting off what YOU know bothers you!!!    And glad that you have gained back a few pounds. Would gladly give you some of mine if I could, but I think getting off the grain myself will do the trick. Doctors orders

Quoted from Victoria

I eliminated all gluten containing grains from my diet about 1 1/2 years ago and have felt so, so, so much better, even though my blood tests were negative for celiac.  Sometimes our bodies know best.

You are so right Victoria, sometimes our bodies know best. I've tested negative for celiac too, but more and more I think grains are bothering me, so I'm going to do my best to kick them. Gonna need lots o' willpower here, anybody have some they'd like to share???

good luck, luana. sounds like you are getting stronger...
Italy, I am trying to get off grain, too. I did it today.........one day at a time.

I tested negative for celiac last year but I hadn't had any wheat in so long, it probably wouldn't show up.  I seem to be a lot less bloated since eliminating all gluten.  Glad to hear that you are doing better, luanaflacco!
Jane

I just visited with the GI specialist again today and I am to eat gluten 6-8 weeks before the biopsy.  That should be an interesting time for my gut!

Good luck!  It can be good to know for sure, though no test can really rule it out.

I refused to do the gluten challenge, because I have no doubt gluten makes me terribly sick and I don't want to go through it.  I'd probably develop dermatitis herpetiformis again after a week of gluten, and could get a skin biopsy and go GF straightaway again, with no more questions asked.

Oh well, I'd rather get healthy than please the doctors with the extent of my unhealthiness.

Quoted from Luana

Well I had my consult today.  The specialist looked at me and said "I do not know why you do what your do."  I said, "You mean taking wheat out of my diet."  He said, "Yes, you have to be diagnosed first."

Well, I guess that means that you're not technically 'poisoned' until they find arsenic in your blood.

Luano,
Wheat is not good for our bloodtype anyway.  Have you considered just eliminating all wheat products and adhering to your BTD, thus saving yourself the potential anguish of eating the poison for the sake of a test to see if you are poisoned?

I wonder if you will be able to tolerate it for the 6-8 weeks?  If not do you  have a back up plan?
After you test positive how will that change your life?
Sometimes the clinical  symptoms are enough for a diagnosis without the test.
  Do you have all the symptoms without the test?
What sort of "specialist" is this doctor?


  

The problem is that doctors don't think gluten sensitivity is serious, but it can be very serious.  Plenty of people get sick from gluten without having a positive biopsy, including people with Dermatitis Herpetiformis, which has all the same risk factors as celiac disease.  It's fairly recent that doctors have stopped doing intestinal biopsies on DH patients.

Once there's a drug for CD, the diagnosis process will change dramatically.  

If you notice any itchy bumps crop up, go to a good dermatologist, maybe you'll be lucky and be able to get a skin biopsy and cut short the gluten challenge as well.  I don't know if feeling like you were attacked by a swarm of mosquitos is "lucky", but hey.  

I have to admit that sometimes I do recommend the full range of tests for some people, if I know that they'll doubt the diagnosis later without the solid evidence.  My nephew just went GF, then a few months later wasn't sure it was helping, os went back on Gluten, and will go in for a biopsy. (everyone else was sure it was helping him, but he wasn't!)  Most BTD'ers don't have an issue with that though...of course, I wish I'd challenged it a few fewer times than I did.

Yes, I think also the gluten sensitivity is a very serious issue.

How often during that 6-8 week period do you have to eat gluten?
Everyday?  I have been through a very rough time of digestive problems in the past and I know the pain that gluten can cause.  I would be concerned about permanent damage since you are still trying to heal from previous damage.

I mostly rely on my symptoms to guide me along the way.  The pain I had when I ate gluten was enough for me to stay away from it.  If I had taken the test for gluten sensitivity and it came back negative, I stll wouldn't have been able to start eating it again because I still had symptoms from it.

Well, good luck with the direction you feel you should take.

You can also still avoid the wheat and get enough gluten for the tests.  Spelt and Kamut don't have as much gluten as wheat, so maybe you'd need a little more, but they wouldn't do the other damage wheat can do.  I might even be able to 'survive' that type of gluten challenge, with a great deal of physical discomfort, of course, but it would be risking too much for me to eat wheat...I'm really not sure I'd survive that.

It seems crazy to me to recommend eating gluten for 6-8 weeks if you think you are allergic to it. If it was me, I would find a new doctor.