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Tests Results "very High." But How High Exactly?


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8 replies to this topic

#1 KnightRobby

 
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Posted 07 October 2012 - 10:42 PM

I really don't know much about my tests results except that they are "very high" as my Allergist put it. I also have some other tests results for foods, but he said I shouldn't worry about it (would like your opinion on that too) and focus on getting rid of Gluten.

My Celiac Disease Panel, Adult w/ Rflx and IgA tTG Antibody was: 138.09/20. 20 or lower being normal (of course). I was wondering what everyone else tested, if they could remember? I'm really curious as to the exact sensitivity of my gluten allergy.

Also, I was tested for Potatoes, which was 1.06/35. Then corn was 0.39/35 (nothing major), tomato 1.48, Carrot 2.37. I don't know if the food results are comparable to my Celiac panel so I can gauge how sensitive I really am to Gluten.

Let me know what your tests results were, if you could remember and if you might know exactly how sensitive I am to gluten. Naturally, definitely not eating Gluten for the rest of my life ;)
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#2 Newbee

 
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Posted 08 October 2012 - 04:05 AM

My first TTG IGA was 125. So your score is also quite high. I have seen people on this forum posting they had scores of 300 or higher. So it definitely could be worse. I haven't had any food tests but I've found through elimination diets that I have problems with a bunch of other foods too.
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#3 ravenwoodglass

 
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Posted 08 October 2012 - 04:32 AM

Your celiac test is not an allergy test. Celiac is an autoimmune disease not an allergy. Having celiac can however impact allergy testing for other substances according to my allergist. When I was tested for true allergies before diagnosis I showed reactions to 98 out of 99 substances (wasn't tested just for foods). My allergist later explained that because of the autoimmune impact of my undiagnosed celiac my immune system was in 'hyperdrive'. He said that likely many of my allergic reactions would subside once I had healed from celiac. He was right in my case. Out of those 98 reactive results within a year or so I had only 3 true allergies that remained.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#4 lovegrov

 
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Posted 08 October 2012 - 06:40 AM

My ttg was higher but yours is still quite high. It will come back down on the gluten-free diet, however.

richard
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#5 GottaSki

 
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Posted 08 October 2012 - 06:49 AM

The tTG IgA blood test measures the amount of antibodies in the blood, not necessarily the severity of damage caused by Celiac Disease. Some people with Celiac Disease test blood negative.

In my case I was only mildly positive after decades of undiagnosed Celiac Disease with all biopsies positive with total villous atrophy. I am also "super-sensitive" so you can not make a correlation to your sensitivity based on your tTG IgA - only be thankful that your blood test clearly indicated Celiac Disease.

Additionally, sensitivity does not always correlate to damage. There are folks without notable symptoms or positive antibdies, yet severe damage upon endoscopy.

All of our tests and presentations are quite different. The only common factor is the need to completely eliminate all sources of gluten for life.

If you were diagnosed by your Allergist - did you have a full celiac blood panel? If you haven't seen a GI that specializes in Celiac Disease, it would be a good idea. There is no other current treatment besides removing gluten, but follow up testing - full celiac panel and nutritional deficiencies is necessary.
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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 :)


#6 KnightRobby

 
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Posted 08 October 2012 - 11:23 AM

@everyone, Thank you all for the responses. I keep forgetting that it isn't an allergy. I've read about Celiac Disease, but I am still a little bit confused as to how it is classified as an autoimmune disorder. Can someone be kind enough to explain? In the meantime, I'll see if the newbie thread has any info about that (I don't think it does).

Also, I have eliminated Gluten from my diet. It's been around a week. I was also wondering, how quickly did all of your stomach problems start to clear up?

By the way, I can't believe someone tested around 300! They must've felt awful. Hope they are doing better now.

@Newbee, your tests results were very close to mine. How are you doing now and how long have you been Gluten free?

@Gottaski, I don't exactly know much about a full Celiac Panel. I just had the food allergies and Celiac Panel Adult with Rflx Tissue Transglutaminase Ab, IgA tTG Antibody, IgA <----------- I don't know what half that stuff means - lol. I'll definitely be seeing a GI, as soon as I get into my new PCP.

If I didn't reply to you personally, I am not feeling well at all today. Hope you understand.
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#7 LauraB0927

 
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Posted 08 October 2012 - 11:35 AM

Thank you all for the responses. I keep forgetting that it isn't an allergy. I've read about Celiac Disease, but I am still a little bit confused as to how it is classified as an autoimmune disorder. Can someone be kind enough to explain? In the meantime, I'll see if the newbie thread has any info about that (I don't think it does).

Also, I have eliminated Gluten from my diet. It's been around a week. I was also wondering, how quickly did all of your stomach problems start to clear up?


To the best of my knowledge, in simplistic terms (I'm sure others can explain it better), but an allergy causes a histamine response in the body and even sometimes lead to anaphylaxis where the airways constrict and is a very dangerous situation (think of a peanut allergy). An allergy is a hypersensitivity to a food or trigger. With Celiac being an autoimmune disease, its a response by the autoimmune system triggered by exposure to gluten, which causes your body to attack itself (particularly the small intestines) which is why our microvilli in our small intestines become damaged. Our autoimmune systems are supposed to attack viruses and bacteria to keep us healthy, but in Celiacs, our body attacks itself in response to the gluten trigger. This makes it harder for us to absorb food and nutrients and we will eventually become malnourished if we don't start the gluten-free diet. Hope this helps!!

By the way I was diagnosed in May and I still feel my gut healing - it can sometimes take a while for some of us.
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"Dark and difficult times lie ahead ahead - soon we must all face the choice, to do what is right, or what is easy..." - Albus Dumbledore (Harry Potter)

Diagnosed Celiac in May 2012 by TTG level and endoscopy
Acid reflux/GERD (stopped since eating gluten-free)
Syncope
Raynaud's Syndrome
Iron Deficient

#8 Newbee

 
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Posted 08 October 2012 - 06:17 PM

I'm almost 15 months gluten free. I'm still having a lot of problems. I think I've had this disease undiagnosed for 38 years so that probably explains the slow recovery. I also just went in for a check-up and just found out that my thyroid is all messed up (it was fine a year ago). Kind of makes me wonder if my body is attacking my thyroid since I took the gluten out. Fun. I've heard thyroid issues can cause digestive problems so maybe once I get that corrected I'll feel better. I hope you heal much faster than me. When I've heard of people with a ttg iga score of 300+ I've also heard mention of them suspecting cancer. Not sure if that is always the case with scores so high.
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#9 KnightRobby

 
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Posted 10 October 2012 - 12:33 AM

@Laura, thanks for the explanation. That actually sounds about right. I really didn't understand it and the Allergist didn't tell me that it was NOT an allergy. Interestingly, I have had throat tightness before, which is why I've always considered it an allergy. My problems have been so widespread - from heart problems, memory loss, pain, etc - that I've always thought that there was a root cause at the center of all of my problems. It definitely seems to be Gluten - I am so glad I found out about it, though I have to admit it is a pain to deal with foods/ingredients. I think my gut will take awhile to heal completely - seeing an GI doctor in the near future.

@Newbee, wow 38 years. And I thought I had gone undiagnosed for a long time. I believe it too - it is just ridiculous, also considering I just recently ate Gluten-free pancakes with Gluten-free maple syrup and it tasted better than the processed crap. Unbelievable the amount of heartache this has put on Celiac patients. Yeah, I heard about the 300+ test results. I can't imagine. I know mine is high, but wow...that is off the charts, I would think. I am sure my Mom has Celiac (actually, positive about it) and she has had everything checked and thankfully no cancer. We had a friend recently pass away from cancer, and my doctor's husband did too. I never want to see my family members go through such a terrible ailment.

Thanks for the replies.
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