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Just Tested....still Don't Know What's Wrong


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#1 sjdm1234

 
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Posted 14 November 2012 - 10:03 PM

I went to my doctor about 2 months ago. I was advised to be gluten and dairy free for a month and a half and then start eating gluten again. During that time, my symptoms were nonexistent and I felt better. But when I started eating gluten again, my symptoms returned and I felt that my previous symptoms were worse. I just had blood tests to test for allergies to wheat, milk, etc, including Tissue transglutaminase IgA. I just received the results and it seems that they are negative. Could they have come back negative because after being gluten free, I only started eating gluten for 2 1/2 weeks? It is frustrating that the results came back negative and my symptoms are back. I just want to know what my diagnosis is or if its something else. My doctor didn't seem very knowledgable about gluten sensitivity and celiac disease, which from reading from many posts is very common. What should my next steps be? (I 'm waiting to hear from my doctor as I just got my results a few hours ago). In a way, having the test come back positive meant that at least I knew what was wrong but having them come back negative, it just feels that I am back to square one.
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#2 mushroom

 
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Posted 15 November 2012 - 01:48 AM

Hello, and welcome.

I always feel so sorry for those whose doctors do things in reverse -- cause the medical reactions to go aay and then test for the medical reactions. It is absolute insanity. Test first, quit gluten second is the mantra we preach over and over. The blood tests are looking for antibodies to gluten, which start fading away once they are no longer exposed to gluten. And the sad part is, he could do an endoscopy with biopsy to test for intestinal damage, but after six weeks that may also be negative because sufficient healing may have taken place to take you out of range of the testing. There is great dispute about how long it takes on gluten to make the testing results valid, but the majority of doctors tend to underestimate the time required. Six to eight weeks for those not severely compromised seems to be a reasonable estimate -- YMMV.

You can continue eating gluten for a sufficient time for your results to be positive (if it is not too painful for you); you can ask for an endoscopy with biopsy to see if you can get a positive result from that (and make sure he takes at least six samples), or you can just try the gluten free diet and see how it works for you -- how did it work for you??
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
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#3 GottaSki

 
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Posted 15 November 2012 - 07:31 AM

I agree with mushroom. I would only add get written or electrinic copies of all test results.

Was the tTG-IgA the only celiac antiboody test run? If so, remain on gluten - if you can - and have the full celiac panel along with nutrient testing. Nutritional deficicies is another indicator of the malabsorption found in Celiac Disease.

Let us know if you have more questions. Iit is unfortunate that this diagnosis process is often extremely frustrating.

Hang in there :)
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#4 lovegrov

 
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Posted 15 November 2012 - 07:48 AM

And if all else fails and not eating gluten solves your problems, well, I think you know the rest.

richard
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#5 sjdm1234

 
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Posted 15 November 2012 - 09:43 PM

Thank you for that information. It just comes to show that doctors do not have sufficient knowledge on this condition. I didn't have symptoms when I was gluten free and I felt better. Now with eating gluten, the biggest difference is that I am even more tired. It was difficult in the beginning eating gluten free. My doctor didn't really give any helpful advice to what to eat (I lost 10 pounds about less than 2 weeks because I didn't really know what to eat). I have actually had to educate myself on celiac disease because I wasn't reallly obtaining information from my primary doctor and the allergy doctor that reqested the testing.

I have also read about people being non celiac gluten sensitive but that there isn't a blood test, etc to test for this. I don't know if that is something to consider that I could have. I did hear back from my allergy doctor....he said to try gluten free and that there are no other tests to do. I was really disappointed to receive that response. I am considering contacting a local celiac clinic and getting a second opinion. I'm just concerned about the cost for additional testing.

Hello, and welcome.

I always feel so sorry for those whose doctors do things in reverse -- cause the medical reactions to go aay and then test for the medical reactions. It is absolute insanity. Test first, quit gluten second is the mantra we preach over and over. The blood tests are looking for antibodies to gluten, which start fading away once they are no longer exposed to gluten. And the sad part is, he could do an endoscopy with biopsy to test for intestinal damage, but after six weeks that may also be negative because sufficient healing may have taken place to take you out of range of the testing. There is great dispute about how long it takes on gluten to make the testing results valid, but the majority of doctors tend to underestimate the time required. Six to eight weeks for those not severely compromised seems to be a reasonable estimate -- YMMV.

You can continue eating gluten for a sufficient time for your results to be positive (if it is not too painful for you); you can ask for an endoscopy with biopsy to see if you can get a positive result from that (and make sure he takes at least six samples), or you can just try the gluten free diet and see how it works for you -- how did it work for you??


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#6 sjdm1234

 
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Posted 15 November 2012 - 09:52 PM

I was tested for wheat, milk, eggs, etc. and the tTG-IgA only. The response from my doctor was that I should limited gluten but not totally eliminate it right away and to test what my body can tolerate. Maybe I need to accept that I won't likely get a diagnosis and limited gluten based on the fact the effects of my symptoms decreased. But I don't know what internal damage if any I might have. That is what also concerns me.

I agree with mushroom. I would only add get written or electrinic copies of all test results.

Was the tTG-IgA the only celiac antiboody test run? If so, remain on gluten - if you can - and have the full celiac panel along with nutrient testing. Nutritional deficicies is another indicator of the malabsorption found in Celiac Disease.

Let us know if you have more questions. Iit is unfortunate that this diagnosis process is often extremely frustrating.

Hang in there :)


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#7 tom

 
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Posted 15 November 2012 - 10:29 PM

...
The response from my doctor was that I should limited gluten but not totally eliminate it right away and to test what my body can tolerate.
...

For anyone who IS an actual celiac (regardless of what limited/insufficient testing says) this is horrible terrible horrendous malpractice-level bad advice.
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>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03
Dairy-free since 10-04
Soy-free since 5-07

#8 Celiac Mindwarp

 
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Posted 16 November 2012 - 08:58 AM

I had limited gluten for years as I was wheat free 9 years. Gluten free is so different. My life is transformed.

Dreadful advice you got there.

Hope you find a way through, keep asking questions
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- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image




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