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A Little Confused At 3 Month Follow Up Visit


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8 replies to this topic

#1 Roda

 
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Posted 27 January 2009 - 08:26 AM

I just had my three month follow up appointment yesterday with the GI doctor. He asked me how I was doing on the diet and I said fine. The first month was a learning period, but I think I am getting the hang of it. I had one mess up around Jan. 19th. I had very vague gi symptoms to begin with. Acid reflux, low iron/anemia, and only later learned that the constant bloating/constipation (which I thought was normal for me had it all my life) were symptoms. I feel lucky I was not very sick just knew something was off. Anyway, I had an IgA tTG that was around 71 or so. My biopsy stated: "The biopsy demonstrates lamina propria expansion with predominately chronic inflammation consisting of lymphocytes and plasma cells. Neutrophils are also present within the lamina propria and crypts. Villi blunting with focal crypt hyperplasia is seen. Increased intraepithelial lymphocytosis is mild and is below that which would be expected in celiac disease. However, serologic testing may be warrented if there is clinical suspiciion of a gluten sensitive enteropathy as serologic changes precede clear cut histologic changes. No evidence of parasites is seen. Clinical correlation is required." He told me that the duodenal biopsy was consistent with early celiac sprue. Could either repeat celiac sprue blood screen or try gluten free diet for 3 months and see him after. That was enough evidence for me, so I did not repeat any tests and went strainght gluten free. Except for the low iron and newly discoverd vitamin d deficiency, all my other symptoms have resolved. I asked if I would need more celiac blood work to see if the tTG antibody was coming down. He said that they really don't change and a repeat biopsy in a year or two would let him know. He said it would be too early now to see any changes, that I needed to give the diet at least 6 months, and if I was eating balanced that the iron and other things would improve. I asked about trying iron supplements again and said for me to wait another three months since I had stomach trouble from it before. I'm OK with the wait and see with the iron, but am suspucious about the comment on the tTG. He is going to do blood work for nutritional deficiences when I go back in April, again to let me heal naturally from the diet. I like that he wants to take a more natural approach, since I was not that sick to begin with. Any thoughts about repeating the tTG or just wait for another biopsy down the road. Thanks.
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Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


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#2 ravenwoodglass

 
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Posted 27 January 2009 - 10:09 AM

It does take a while for the antibodies to come down and most doctors will check them at 6 months. The choice of whether to rebiopsy is IMHO up to you. If you are still having issues then it may be needed to rule out other conditions but if you blood levels go down and you have fully healed then the rebiopsy isn't something that is absolutely needed. There are even some doctors who are now going off positive blood work and not using the biospy for diagnosis.
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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)

#3 sbj

 
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Posted 27 January 2009 - 10:10 AM

"I asked if I would need more celiac blood work to see if the tTG antibody was coming down. He said that they really don't change and a repeat biopsy in a year or two would let him know. He said it would be too early now to see any changes, that I needed to give the diet at least 6 months, and if I was eating balanced that the iron and other things would improve. . . . Any thoughts about repeating the tTG or just wait for another biopsy down the road. Thanks."

I think your doctor is right about most things here but I disagree with him about the need for follow-up bloodwork. My gastro has told me that the bloodwork would be helpful. I have read this elsewhere:

http://www.celiacdis...lowUpTests7.pdf

"tTG-IgA testing should be used for follow-up care. Interpreting this test result is straightforward—a celiac on the gluten-free diet should have a negative test. The numerical value of the test is not important. ... Follow Up Test #1: tTG-IgA: This test result should be negative. The numerical value of the test doesn’t matter as long as the result is negative. Follow Up Test #2: Anti-gliadin IgA: This result should have a very low negative value. In this case, the numerical value does matter, because a high negative test result still indicates that a patient is eating gluten. A low negative indicates that the diet is working well."


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#4 *Daniella*

 
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Posted 27 January 2009 - 11:01 AM

This is a good question.

I had a celiac panel done 3 months after diangoses. I just received the results back and they said everything is within normal ranges. Is that normal to be within normal ranges so soon?
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Diagnosed 10/20/08
Positive Bloodwork and Biopsy

#5 ravenwoodglass

 
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Posted 27 January 2009 - 03:18 PM

This is a good question.

I had a celiac panel done 3 months after diangoses. I just received the results back and they said everything is within normal ranges. Is that normal to be within normal ranges so soon?


Sure. Alot depends on how high the antibodies were to begin with and everyone is an individual. It also shows you are doing a real good job with the diet. Hopefully you are feeing better too.
  • 0
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)

#6 Roda

 
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Posted 28 January 2009 - 06:03 AM

I think your doctor is right about most things here but I disagree with him about the need for follow-up bloodwork. My gastro has told me that the bloodwork would be helpful. I have read this elsewhere:

http://www.celiacdis...sets/pdf/celiac disease...lowUpTests7.pdf


"tTG-IgA testing should be used for follow-up care. Interpreting this test result is straightforward—a celiac on the gluten-free diet should have a negative test. The numerical value of the test is not important. ... Follow Up Test #1: tTG-IgA: This test result should be negative. The numerical value of the test doesn’t matter as long as the result is negative. Follow Up Test #2: Anti-gliadin IgA: This result should have a very low negative value. In this case, the numerical value does matter, because a high negative test result still indicates that a patient is eating gluten. A low negative indicates that the diet is working well."


sbj--This is good. I can take this with me to my next appointment. My endocrinologist usually will order tests for me if I ask and if they are relevant. I don't know about the GI dr yet. I like him and have even worked with him in the OR. So he knows that I like to do my research. It probably won't be an issue. Thanks! I'll be curious to see if the IgA tTG comes down. I did find this also at

http://www.celiacdis...yScreening3.pdf

"Does this apply to you?
It is important to note that some people with Type 1 Diabetes, Hashimoto’s thyroiditis and autoimmune liver conditions can have a falsely positive tissue transglutaminase test. For this reason, it is important that tTG test results in people with these conditions be checked with the EMA test. The physician may nevertheless want to obtain an intestinal biopsy if clinically indicated, even if EMA are negative."


I did not have the EMA but I am not concerned for myself since I had the biopsy, but was wondering if anyone has run into this?
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Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#7 sbj

 
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Posted 28 January 2009 - 08:36 AM

I'll be curious to see if the IgA tTG comes down.

I'm actually quite eager myself to make it to 6 months so that I can be re-tested. I want to see if I have made any progress. While I have been very strict in my diet I have eaten products that are made on wheat lines and wheat equipment and such. I've also eaten out and I haven't paid too much attention to cross contamination. I mean, I've been diligent but I haven't been extreme. So I am a little concerned that some minute bits of gluten have gotten through. If so, those minute bits are enough to set off my auto-immune system. It will be very interesting to see the test results . . .
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#8 Jenny (AZ via TX)

 
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Posted 28 January 2009 - 09:52 AM

My doctor told me to come back in a year. I'm going to go to my family doc to see if she will run the bloodwork. I really don't want to go back to the gastro unless I have a problem (I didn't think she was that good).

I think it would have been nice to be re-tested at 6 months just to make sure I was doing the diet correctly.
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Jenny
(Texas girl in AZ)

Diag: 2/2008
Bloodwork - positive, 2/19/08
Biopsy - positive, 2/26/08
Colonoscopy - clean as a whistle!, 2/27/08

#9 curiousgeorge

 
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Posted 28 January 2009 - 11:10 AM

I'm going to ask for a repeat on my next appt. I really want to see where my TTG is at. For me its almost lke getting an A on a test if its low it means I've been dilligent :) Or so I'm hoping!
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