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Positive Celiac Blood Work...


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6 replies to this topic

#1 Dee777

 
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Posted 31 January 2011 - 07:13 PM

Hello, everyone. I am new, this is my first post. I have very limited knowledge of Celiac Disease, just what little I gathered from the internet and what my doctor has explained to me. I do, however, have a question for those of you more knowledgeable than I who have been through it all before me!

I have had symptoms for years, had a colonoscopy a few months ago which I was told only showed inflammation. I had an upper GI barium x ray series which basically only showed that even barium shoots through my digestive system at the speed of light. The blood test for Celiac showed the numbers were extremely high... in the hundreds. I did not, however, have an endoscopy and biopsy. The only biopsy taken was when I had the colonoscopy. I have been gluten free for 7 days and already feel so much better. My question is do I ask for an endoscopy and biopsy, or are they right in diagnosing me with the tests that have been done? Thanks for any advice you can give me!

Dee
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#2 adab8ca

 
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Posted 31 January 2011 - 08:05 PM

Hello, everyone. I am new, this is my first post. I have very limited knowledge of Celiac Disease, just what little I gathered from the internet and what my doctor has explained to me. I do, however, have a question for those of you more knowledgeable than I who have been through it all before me!

I have had symptoms for years, had a colonoscopy a few months ago which I was told only showed inflammation. I had an upper GI barium x ray series which basically only showed that even barium shoots through my digestive system at the speed of light. The blood test for Celiac showed the numbers were extremely high... in the hundreds. I did not, however, have an endoscopy and biopsy. The only biopsy taken was when I had the colonoscopy. I have been gluten free for 7 days and already feel so much better. My question is do I ask for an endoscopy and biopsy, or are they right in diagnosing me with the tests that have been done? Thanks for any advice you can give me!

Dee

Welcome!
With very positive blood work and a positive response to the diet, I would say that you are good to go. Other tests you may want to ask for are iron, B vitamins, Vit D as these are things that can be low in Celiac disease and should be monitored.
You still may want to check with your doctor with what they recommend. I had very very high blood work but totally atypical symptoms, so I had the biopsy (that the GI said looked like celiac while he was poking around in there). Even so, my GP was positive it was Celiac from the blood work but my symptoms were so unknown to the DR's around here that she just wanted to make sure we left no stone unturned.
Good luck, any questions, ask away!
ada
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TTG >200 (normal <10)
IgA gliadin 24 (normal <11)
IgG gliadin 38 (normal <11)
Endoscopy showed damage that looked like "classic celiac", biopsy showed total villous atrophy
Started gluten-free diet Aug 31, 2010
Only real symptoms are huge weight loss and neuropathy

#3 Dee777

 
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Posted 31 January 2011 - 08:19 PM

Welcome!
With very positive blood work and a positive response to the diet, I would say that you are good to go. Other tests you may want to ask for are iron, B vitamins, Vit D as these are things that can be low in Celiac disease and should be monitored.
You still may want to check with your doctor with what they recommend. I had very very high blood work but totally atypical symptoms, so I had the biopsy (that the GI said looked like celiac while he was poking around in there). Even so, my GP was positive it was Celiac from the blood work but my symptoms were so unknown to the DR's around here that she just wanted to make sure we left no stone unturned.
Good luck, any questions, ask away!
ada


Thank you very much for your quick reply! I am very much looking forward to learning as much as I can about Celiac, and maybe will be able to hopefully help someone else out someday lol

Apaprently my doctor is sending me for more blood tests this week he did say something about anemia etc. but to be honest my head was still just hearing celiac... Anyway, he sent me to the dietitian the next day and seems to have things rolling for me, so I am quite grateful for that!

Thanks again!
Dee
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#4 mushroom

 
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Posted 01 February 2011 - 12:41 AM

It seems like you have a good doctor who is on top of things. Yes, anemia is very common, so is low Vit. D and B12, potassium, magnesium, calcium, zinc. I had low levels of all these except calcium. It is important to have your doctor check your levels because you may need prescription strength supplements for some things, especially D3. I still get injections of B12 because I can't handle the sublinguals that most people take to bypass the gut which is not doing a very good job of absorbing things right now.

I am glad you found the dietitian helpful. If we can help you in any way with foods, recipes, etc., just holler :D There is a very good recipe section on the forum and googling gluten free and ( ) whatever, will bring up thousands more. Frankly, because of other intolerances I get most of my recipes here or elsewhere on the net, not out of cookbooks, although one good cookbook will help - maybe Gluten Free for Dummies or something else your dietitian recommended.

Most of us end up taking some form of probiotic to promote healing in the gut, and many take digestive enzymes because gluten seems to put the pancreas on holiday and it does not produce the enzymes we need to digest our food. Speaking of enzymes, lactase is made in the area of the small intestine which is damaged by gluten so you should skip milk, cream, ice cream for a few months until you have had a chance to heal. It is possible other dairy will give you problems too - you will just have to try and see,

To address your initial question of whether you should have a biopsy, the people to whom this seems to matter the most are doctors and schools (who need the piece of paper to provide a gluten free environment for children) also those gluten intolerants who feel that they will not adhere to the diet without the piece of paper. For the rest of us, we know that the treatment is the same regardless of the piece of paper, so if we want to feel better we just don't eat gluten and don't worry about whether or not we are sufficiently damaged to test positive on the biopsy. :)

Good luck on your healing journey.
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Neroli


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

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Caffeine free 1973
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Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
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Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
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#5 frieze

 
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Posted 01 February 2011 - 04:56 AM

Hello, everyone. I am new, this is my first post. I have very limited knowledge of Celiac Disease, just what little I gathered from the internet and what my doctor has explained to me. I do, however, have a question for those of you more knowledgeable than I who have been through it all before me!

I have had symptoms for years, had a colonoscopy a few months ago which I was told only showed inflammation. I had an upper GI barium x ray series which basically only showed that even barium shoots through my digestive system at the speed of light. The blood test for Celiac showed the numbers were extremely high... in the hundreds. I did not, however, have an endoscopy and biopsy. The only biopsy taken was when I had the colonoscopy. I have been gluten free for 7 days and already feel so much better. My question is do I ask for an endoscopy and biopsy, or are they right in diagnosing me with the tests that have been done? Thanks for any advice you can give me!

Dee

Since you have been gluten free for 7 days, it is likely too late to arrange an endoscopy.
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#6 ravenwoodglass

 
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Posted 01 February 2011 - 06:21 AM

You would need to go back on gluten and stay on it until the biopsy. I would take your doctors diagnosis and be happy he is educated enough to give you one. Many doctors are now skipping the biopsy when the bloods are positive as the endo has a high risk of a false negative anyway. Stay on the diet and consider yourself diagnosed.
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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)

#7 Dee777

 
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Posted 01 February 2011 - 08:43 AM

Wow! Thank you all so very much for your input, it is so very much appreciated. Yes, I am very grateful to have a doctor who is as wonderful as mine is. He always takes the time to listen, and more often than not we end up chatting about our families etc before I leave. Such a nice man, and a caring one. He didn't give up on me, encouraged me when I was getting fed up with the tests and depressed and sometimes even irritable with him for digging into my health issues with such vigor lol. I owe him my life.

I am so very glad I stumbled in here last night, I was truthfully getting a little fed up as I was starting to focus more on what I couldn't eat than what I could and I am typically not a negative person. This is fabulous, I look forward to learning much from you all! Have a fabulous day!

Dee
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