Jump to content

Follow Us:  Twitter Facebook RSS Feed            




   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Celiac.com Sponsor:                                    


Photo
- - - - -

Wierd Symptoms - Celiac?


  • Please log in to reply

21 replies to this topic

#16 seeking_wholeness

 
seeking_wholeness

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 350 posts
 

Posted 03 February 2004 - 12:36 PM

Mariann, I totally agree with you!
  • 0
Sarah
gluten-free since November 1, 2003

Celiac.com Sponsor:

#17 YankeeDB

 
YankeeDB

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 164 posts
 

Posted 04 February 2004 - 07:21 AM

Regarding that negative gluten allergy test--sometimes tests are done incorrectly or interpreted incorrectly. Sometimes we think of them as gospel but errors can be common. Just my $.02.
  • 0

#18 Nin

 
Nin

    New Community Member

  • Advanced Members
  • Pip
  • 21 posts
 

Posted 04 February 2004 - 10:17 AM

I agree about the definition of being a celiac.
I did the enterolab testing, so medically I am classed as "gluten sensitive".
I consider myself a celiac. Not full blown that goodness, but that is the only difference. I think the problem arises from the traditional medical practice where they say the gold standard is the biospy proof. There was a good article in the Celiac newsletter that said do we wait for a heart attack to say you have heart disease, no of course not. Same thing should be done with celiac. Perhaps in time they will change how they communicate about this problem and make it easier for all to understand.
  • 0

#19 alexa11219

 
alexa11219

    New Community Member

  • Advanced Members
  • Pip
  • 23 posts
 

Posted 08 February 2004 - 11:03 AM

VAGuy, you are asking me how my doctor came to that conclusion. Very simple, empirically, the way my allergologist did it - if he doesn't know that allergy can cause diarrhea, it means it can't cause it. If my biopsy showed the villi were intact (I'm not sure they were), it means for them there's no celiac disease. If there's no celiac disease but I'm much better being gluten-free, it means I have gluten intolerance. None of specific blood tests for celiac disease or stool tests were done. Tell you even more, when they perform biopsy, they knew I was gluten-free for MONTHS. I didn't know it changes the result, doctors are supposed to know those things, but I'm sure they did not. I asked them what caused all those ulcers. The answer was, "Since no virus or bacteria was not found, it means it's caused by gluten."

Now, I'm between insurances. I can't use my previous one, and the next one will be avalable not earlier than in 3 months. I can't consult a different Dr. or do other tests. I feel much, much better being gluten-free, but still have some simptoms (bloating, gas, sometimes gastric and intestinal pain, not often though, joint pain, thinning hair). Allergy runs in my family. In addition to gluten, I have allergy to eggs, shell fish, lamb, some antibiotics and other medications, other stuff. Maybe it would be wise to spend that money (about $450) for Enterolab and get tested not only for gluten (but now I'm gluten free for about a year, will the result be correct? isn't it too late?) but in addition for yeast and lactose?

I am totally confused, absolutely upset and devastated, and scared. I don't know who I can trust. Can it wait several months? Anyone, answer me please. You may contact me directly at alexa11219@aol since they misplace the posted information and sometimes it's difficult to find the necessary posting or section. Thank you.

Alexa
  • 0

#20 gf4life

 
gf4life

    Our family "photo" as drawn by my daughter Hannah

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,634 posts
 

Posted 08 February 2004 - 01:46 PM

Alexa,

If you want to know sooner what is wrong, you could still do the Enterolab tests. The complete panel of tests includes the Gluten sensitivity stool test, tissue transglutaminase stool test, intestinal malabsorption test, gluten sensitivity gene test, and for a limited time, free milk sensitivity stool test for $349. Even though you have been gluten free for a year, it can tell you if you are still getting some gluten accidentally. Or you could just order some of the individual tests for food intolerances and the gene test.

I know it can be frustrating to have to wait and still not be sure that you will get the answers to your health questions. I've fought the system for far too long myself, and I am getting very tired of it. I am almost done with all the testing for myself, and am part way through the testing for my kids. I am so tired of all the doctors and most that I have met have not clue about celiac disease. When my GI finally agreed to do a biopsy, even though she didn't think I have Celiac Disease, she knew I had started a gluten free diet. She did not tell me I needed to go back on gluten, but I knew, so I scheduled my test for two months down the road and loaded my body up with far too much gluten everyday for two months. I'm still not sure it was enough. I get my results back on Friday and after 3 weeks gluten free (except for a few accidents) I still don't feel good. I had been gluten free twice before and felt better within a few days. I really feel like I did a lot more damage to myself during my gluten challenge than was there before. I do not recommend for you to go back on gluten for testing.
Enterolab is probably your best bet.

God bless,
Mariann :)
  • 0
~West Coast-Central California~

Mariann, gluten intolerant and mother of 3 gluten intolerant children

#21 alexa11219

 
alexa11219

    New Community Member

  • Advanced Members
  • Pip
  • 23 posts
 

Posted 11 February 2004 - 05:32 PM

Thank you Mariann for your support and advice. $349 is a lot, but I believe will serve me well. I'll do it. Thanks again.

Alexa
  • 0

#22 alexa11219

 
alexa11219

    New Community Member

  • Advanced Members
  • Pip
  • 23 posts
 

Posted 14 February 2004 - 03:30 PM

Hi everyone. Today, I re-read once again your responses for which I'm very grateful. I oredered Gluten Sensitivity Stool and Gene Panel Complete plus Milk Sensitivity Stool Test from Enterolab. Hopefully, it'll clear up at least what exactly I'm sensitive and what's causing the symptoms I's still having though I believe I'm gluten-free. Unfortunately, they charge additional $19.95 for shipping, so total is $368.95 :angry: . Well, what the heck, it's worth it in any case.
Everyone have a nice holiday :P ,
Alexa
  • 0




0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: