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The Glutenator

Antibody Levels

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I just got back from the gastroenterologist and am a bit confused. Before going gluten-free, my antibody levels were 53 when normal is 2 - 5 and anything above 18 is celiac. Needless to say I was a strong positive! About 6 weeks after going gluten-free I went for a second blood test and have finally gone for a follow up to get the results. My levels are the exact same! I am pretty sure I am completely gluten-free with my diet, because when I have been cc'd or glutneated boy do I know it! Are there any other reasons my antibody levels are the same? The doctor said I may have a very very sensitive immune system and that this level may be a plateau for me. Is this dangerous for my health? Any other explanations? I am a bit concerned right now and would love some feedback.


Fighting celiac one gluten-free bite at a time

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I just got back from the gastroenterologist and am a bit confused. Before going gluten-free, my antibody levels were 53 when normal is 2 - 5 and anything above 18 is celiac. Needless to say I was a strong positive! About 6 weeks after going gluten-free I went for a second blood test and have finally gone for a follow up to get the results. My levels are the exact same! I am pretty sure I am completely gluten-free with my diet, because when I have been cc'd or glutneated boy do I know it! Are there any other reasons my antibody levels are the same? The doctor said I may have a very very sensitive immune system and that this level may be a plateau for me. Is this dangerous for my health? Any other explanations? I am a bit concerned right now and would love some feedback.

I'm questioning the short length of time you've been gluten free to be already testing for antibodies and expecting them to drop if you had significant damage at diagnosis. That being said, I really don't know what is recommended although my gastro suggested being retested in 6 months to a year.

I'm interested to see what others have to say about this, too...I've only been gluten free since April 9 and have not yet been retested.


Sylvia

Positive Celiac Blood Panel - Dec., 2009

Endoscopy with Positive Biopsy - April 9, 2010

Gluten Free - April 9, 2010

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I'm not sure I understand how long you've been gluten free. It sounds like you said you had one test, then 6 weeks of gluten free later you had another, and then you've had a 3rd test?? But how long from the 1st to the 3rd if that is the case? My dr also said to re-test in 6mos to a year. My first test before diagnosis I believe my antibodies were 88 (it's in my sig) and I just had it redone, and it was down to 9.


41 year old homeschooling mom of 5

ttg iga 88, reference range 0-19 gliadin peptide antibody iga 105, reference range 0-31

endoscopy positive for celiac disease, hiatal hernia, major acid reflux damage

diagnosed with arthritis in my teens, thyroid disease in my 20's, epilepsy in my 20's, adult ADD in my 30's,

suffered from joint pain, migraines, seizures, 4 miscarriages, 2 years infertility, scalp rash, bloating, chronic constipation, acid reflux, weight gain, hashimoto's disease, enlarged thyroid, thyroid nodule, extreme fatigue, low vitamin D, anemia, mouth and nose sores

Started gluten-free diet 10/7/09! Never had another seizure after 10 years of epilepsy. TRUE STORY. 2 babies after going gluten-free

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I would not be worried - I believe it takes a lot longer than 6 weeks for your antibodies to go down.

Wait at least six months - then if they're still high, that's when you can freak out.

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I'm not sure I understand how long you've been gluten free. It sounds like you said you had one test, then 6 weeks of gluten free later you had another, and then you've had a 3rd test?? But how long from the 1st to the 3rd if that is the case? My dr also said to re-test in 6mos to a year. My first test before diagnosis I believe my antibodies were 88 (it's in my sig) and I just had it redone, and it was down to 9.

Sorry for the confusion, I have only had two tests. The first one for diagnosis, and now a second. The second test was after 6 weeks going gluten-free, but then I had two wait 2 and a half months for a follow up appointment (my scheduling issues, not the doctor's...but now that I feel so great no need to rush back to the appointments, haha).

Thanks for your feedback. He is doing a second biopsy to make sure that is starting to look better. All I know is I feel so great these days.


Fighting celiac one gluten-free bite at a time

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A second biopsy after 4 months? that didn't leave you much time to heal. I'd be inclined to just get blood work done at 6 months and then, if there is no change, to consider a second biopsy at one year. (But I tend to wake up during such things and remember them as rather uncomfortable.) Especially since you feel good! If you still felt awful, that would be another matter.


2/2010 Malabsorption becomes dramatically noticable

3/2010 Negative IgA EMA; negative IgA TTG

4/2010 Negative biopsy

5/2010 Elimination diet; symptoms begin to resolve on gluten-free diet round two (10 days)

5/2010 Diagnosed gluten sensitive based on weakly positive repeat IgA & IgG TTGs and dietary response; decline capsule endoscopy.

Now, what to do about my cookbook in progress? Make it gluten-free?

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He is doing a second biopsy to make sure that is starting to look better. All I know is I feel so great these days.

I would get antibodies rechecked at 6 months and then if they are still elevated it might be appropriate to rebiopsy in case you are someone who has 'silent' celiac to make sure that damage is being repaired. IMHO rechecking at this point is too soon.


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)

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 in time with proper diagnosis of Celiac November 2002

 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)

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I had my antibody levels rechecked at 6 months and then again a little over a year later. I did have a repeat EGD and biopsy this April (1 1/2 years since last one) but I had the test for other reasons and since he was there he rebiopsied the small bowel to check progress. I my opinion I wouldn't rescope this soon. Wait for your six month blood work and then go from there.


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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Good to hear. I am actually going away for the next couple months and won't have the endo until I get back, so the second biopsy will be over 6 months after being gluten-free. It's already booked and I wasn't very affected by it last time, so mind as well keep the appointment. It is really great to hear that I don't need to get too worried yet.


Fighting celiac one gluten-free bite at a time

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I agree with everybody else, too soon to worry yet! What blood test are you talking about? tTG? My tTG level was 168 at first... 5 gluten free weeks later my doctor retested it only because I had to get some other bloodwork done anyway and it had dropped to 65. She did however make a point to say it's not normal to retest that quickly and that she wants to test again around 6 months gluten-free to see if it has dropped closer to more normal ranges since 65 is still too high but my body definitely didn't have enough time yet! It seems REALLY soon to have another EGD...


Thanks!!!

---------------------------------------------------

Kim

Newly diagnosed Celiac trying to learn the ropes

Very Positive tTG 3/10

Positive EGD/Biopsy 4/10

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