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consult with Gastroenterologist  This thread currently has 738 views. Print Print Thread
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Luana
Wednesday, October 17, 2007, 8:55pm Report to Moderator Report to Moderator

Rh-; 46% NOMAD (Receptor)
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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.


BTD as of 03/13/07; GTD as of 01/01/11

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Lola
Wednesday, October 17, 2007, 9:06pm Report to Moderator Report to Moderator

GT1; L (a-b-); (se); PROP-T; NN
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great news!


''Just follow the book, don't look for magic fixes to get you off the hook. Do the work.'' Dr.D.'98
DNA mt/Haplo H; Y-chrom/J2(M172);ISTJ
The harder you are on yourself, the easier life will be on you!
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Victoria
Wednesday, October 17, 2007, 10:15pm Report to Moderator Report to Moderator

Swami Nomad 56%
Sun Beh Nim
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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.



Normal day, let me be aware of the treasure you are.
Let me not pass you by in quest
of some rare and perfect tomorrow.
~Mary Jean Irion
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Lloyd
Thursday, October 18, 2007, 1:23am Report to Moderator Report to Moderator

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Sa Bon Nim
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Glad you're making some progress.
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italybound
Thursday, October 18, 2007, 2:24am Report to Moderator Report to Moderator

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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???



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jayneeo
Thursday, October 18, 2007, 3:39am Report to Moderator Report to Moderator

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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.
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Jane
Thursday, October 18, 2007, 3:13pm Report to Moderator Report to Moderator

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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
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Luana
Tuesday, October 30, 2007, 9:22pm Report to Moderator Report to Moderator

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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!


BTD as of 03/13/07; GTD as of 01/01/11

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Melissa_J
Tuesday, October 30, 2007, 11:21pm Report to Moderator Report to Moderator

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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.


Type O+ blogger, secretor afterall. Gluten intolerant. With two gluten intolerant sons:  A+ Secretor 10 yo (also fructose intolerant and slightly egg allergic), and  O- 7yo.
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Dr. D
Wednesday, October 31, 2007, 10:08am Report to Moderator Report to Moderator

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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.


A whole system is a living system is a learning system.’ -Stewart Brand
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Victoria
Wednesday, October 31, 2007, 5:33pm Report to Moderator Report to Moderator

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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?



Normal day, let me be aware of the treasure you are.
Let me not pass you by in quest
of some rare and perfect tomorrow.
~Mary Jean Irion
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Andrea AWsec
Wednesday, October 31, 2007, 7:18pm Report to Moderator Report to Moderator

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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?


  


MIFHI

"Do not try to satisfy your vanity by teaching a great many things. Awaken people's curiosity. It is enough to open minds; do not overload them." Anatole France

"Healthy people have the least overt symptoms from eating avoid foods." Dr. D'Adamo

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Andrea AWsec  -  Wednesday, October 31, 2007, 11:38pm
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Melissa_J
Wednesday, October 31, 2007, 9:44pm Report to Moderator Report to Moderator

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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.


Type O+ blogger, secretor afterall. Gluten intolerant. With two gluten intolerant sons:  A+ Secretor 10 yo (also fructose intolerant and slightly egg allergic), and  O- 7yo.
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karen
Thursday, November 1, 2007, 3:05am Report to Moderator Report to Moderator

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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.
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Melissa_J
Thursday, November 1, 2007, 6:01am Report to Moderator Report to Moderator

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Sa Bon Nim
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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.


Type O+ blogger, secretor afterall. Gluten intolerant. With two gluten intolerant sons:  A+ Secretor 10 yo (also fructose intolerant and slightly egg allergic), and  O- 7yo.
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Curious
Friday, November 2, 2007, 12:01am Report to Moderator Report to Moderator

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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.
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