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GFAnnie

Questions About 1 Year Follow-Up Test.

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I have a one year follow-up appointment next week with my doctor who doesn't believe any follow-up is necessary! And to be honest, I don't even know which tests exactly I'm supposed to request, and what kind of results are expected/acceptable after the first year. I know my doctor is not going to know, because like I said, she believes if I'm following a gluten free diet no follow-up testing is necessary. I know well enough to know this isn't true, but that's about all I know. In general, I'm quite clueless about the blood tests and results - my diagnosis was really kind of an unexpected surprise. Can anyone guide me, please!

 

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I think you should probably have all of your vitamin levels checked and compared to last years (if you had them but check them anyway), and check your blood in case you are accidentally contaminating yourself and do not even know it. The same blood panel as the first time.  Thats just my opinion, and I am not a doctor, but I would want to check those things and confirm because gluten is SNEAKY and you could be unknowingly ingesting it if you do not have severe reaction to it and ESPECIALLY if you had no symptoms to begin with.

 

ETA: It is also a good thing to get a yearly check up. Preventative medicine is THE BEST THING.

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tTG-IgA (Tissue Transglutaminase)

tTG-IgG

DGP-IgA (Deamidated Gliadin Peptide)

DGP-IgG

EMA-IgA (Edomysial antibodies)

Most folks are back in normal range after a year....if completely gluten free.

Folks that remain positive either started off with extremely high positives or are not completely gluten free. Compare results to original antibody levels. If you don't know them, as for a written copy from your doctors.

As mentioned, it is a very good idea to check that nutrient levels are all good :)


-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 :)

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Show him this and say " This is the minimal standard of care".

http://www.cureceliacdisease.org/archives/faq/how-often-should-follow-up-testing-occur

How often should follow-up testing occur?

New celiacs should receive follow-up testing twice in the first year after their diagnosis. The first appointment should occur 3-6 months after the diagnosis, and the second should occur after 1 year on a gluten-free diet. After that, a celiac should receive follow-up testing on a yearly basis. We recommend checking both tTG and DGP (Deamidated gliadin peptides) at each screening.


 

 

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I have been gluten free for around 20 years. I thought I was finally "safe". NO WAY! I suddenly was really weak and sick for a week. Turns out I had a GI bleed. My GI specialist has a couple of patients who were almost as sick as me who eventually ended up with GI bleeds. He is trying to start some research to figure if this is random or a result of the long time to diagnosis.

 

Yep, I'd see the doctor and get the blood work done to test vitamin levels. kareng posted a good site for information.

 

If your not happy, there are other doctors around who know about these issues.

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We definitely found it helpful to get the DGP tests run for follow-up, as well as tTG. It was hard to convince my daughter's GI to order them, even after showing him the Univ. of Chicago recommendation. Both tests together really provided valuable information, though. Her tTG was still coming in as a "weak positive" after a year and a half with an extremely strict diet (almost everything cooked from scratch at home in a gluten-free house or from a dedicated gluten-free facility, no restaurants, all toiletries checked, new kitchen equipment, etc.). It had been a high positive at diagnosis, so there was a huge improvement - but still, the tTG hadn't fallen all the way and we couldn't figure out why.

 

Anyhow, the DGP tests (which had also been very high at diagnosis) were squarely negative. Since those tests are believed to rise and fall more quickly than tTG, this convinced us that indeed there was no gluten sneaking into her diet, and the lingering "weak positive" tTG needed further investigation. This led her doctor to order thorough thyroid tests to see if something else was going on. We don't have those results yet, but regardless of the outcome it's good that he's investigating.

 

Even if you didn't have the DPG tests run before, having them in addition to tTG now could be useful if the tTG isn't totally back to normal and you're trying to figure out whether it's from cc or possibly some other cause.


Daughter: Positive tTG-IgA, DGP-IgA, and DGP-IgG. Celiac confirmed by biopsy in June 2013, at age four. Clear gastrointestinal, behavioral, and neurological/sensory symptoms since very early infancy, even when exclusively breastfeeding.

Me: Diagnosed by GI with "presumed celiac" based on health history, celiac in family, and resolution of fat malabsorption and many other symptoms on gluten-free diet. Long history of eczema, chronic diarrhea, steatorrhea, ataxia, peripheral neuropathy, infertility, chronic insomnia, low cholesterol, vitamin deficiencies, and joint pain. Negative celiac tests after 15 years gluten-light and then a brief but awful gluten challenge. 

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I did not ask for follow-up testing because I had been living with my gluten-free husband for over a decade. I knew the gluten-free drill and any mishaps affect two people now. I did ask for CBC panel with Ferritin since anemia was my only symptom at the time of my diagnosis (resolved in six months). For most folks, I think a follow-up celiac panel is a must!


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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Actually my doctor told me the same - unless I was having problems I did not need an "official" yearly check.  That said, I was seeing her about every three or four months anyway as my vitamin level were off.  Had a lot of trouble with iron and B12.  Given all of that, yes, I would go ahead a get a yearly check.

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My gi agrees with kareng's doctor mostly. I have a gluten blood test ev 6 mos. and I'm in my second year of being gluten free (the first year was on again-off again diagnosis so a new dr. was in order).  In addition, I had a second endoscopy a year later, and he recommends a repeat ev 3 yrs.  I think the gluten test will become less often, but I had some other issues to deal with, so he checks it every time. He was going to run a nutrient level test, but my gp had already done this so he was able pull up the results.  My gp reruns nutrients levels ev year unless I call with a problem, and she automatically orders one since I had calcium and iron problems.  

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