In the midst of the diagnosis process

[Carrie1024]

Hello,

I am brand new here. I have had blood work (while eating gluten). Followed by genetic testing (positive for both genes). Now I am on a 4 week gluten free challenge. Doc says she will then repeat my blood work and if my levels normalize she will order an endoscopy and biopsy.

My question/concern is that my blood work is barely positive as follows:

            test:      value:                lab range

	IMMUNOGLOBULIN A	159	87-352
	TTG IgA	<2 U/mL	0-3
	anti-gliadin antibody, IGG, serum	9	0-19
	anti-gliadin antibody, IGA, serum	20	0-19

 

has anyone received a positive diagnosis in a situation like this? I've been gluten free for 3 days now and I already feel different. almost like every cell in my body is responding somehow. 

[GFinDC]

Something doesn't make sense here.  The process for a gluten challenge is to eat gluten every day for 12 weeks before the blood tests and 2 to 4 weeks before and endoscopy.  Not eating gluten before the testing is the wrong thing to do.  The celiac testing depends on the antibodies being active and at detectable levels.  So you should eat at least a small amount of gluten each day to keep the antibodies active.

It's good that you are feeling better but your endoscopy is not going to be reliable if you aren't eating gluten.  You may want to double check with the doctor on how much gluten you should eat each day.

Edited September 30, 2018 by GFinDC

[squirmingitch]

I'm sorry but your doctor has the order of things screwed up. You have to be eating gluten for the endoscopic biopsies.

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What she would have you do is go gluten-free & then she'll give you a referral for an endoscopy where you will have to eat gluten for at least 2 weeks prior. That's backwards.

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[cyclinglady]

I think your doctor just thinks your test result is a fluke.  Most celiacs do get a positive on the TTG tests, but not all. I am one of the few that only tests positive to the DGP IgA, yet my intestinal biopsies revealed some pretty severe damage.  Your result should have prompted your doctor to refer you to a Gastroenterologist.  

Perhaps we do not have the complete story.  Do you have insurance?  What kind of doctor ran the tests?  The genetic test can only rule out celiac disease and not diagnose it.  For example, is often used for family members who do not want to be retested (antibodies checked) every few years.

Please read the links provided.  I think you need to learn more about celiac disease so that you can make an informed decision, especially since your doctor is not following normal protocol. 

[Carrie1024]

I think it’s because she doesn’t believe I have it. She basically told me I had IBS before running blood. Then she ran genetic tests thinking it would rule celiac out. I truly think she believes there will be no change in my numbers after going gluten free.

This is all being done with a gastroenterologist. 

I have been diagnosed with IBs, anxiety, depression, and hypothyroid. 

 

[squirmingitch]

Ohhhhhhh, so she is a GI doc. Find a new GI.

[cyclinglady]

Why are you hypothyroid?  Were your thyroid antibodies ever tested?  Maybe your primary care physician can run that for you.  Autoimmune thyroiditis, type 1 diabetes and celiac disease are strongly linked.  

You are borderline and I am not even sure she ran the correct anti-gliadin test.  It should be “Deamidated”.  You test might be outdated.  The old “Anti-Gliadin” test was not super accurate and was replaced by the Deamidated Gliadin Peptide tests (DGP IgA and DGP IgG versions) like more than five years ago.  Find out which test was run.  

I would look into finding another GI who is celiac savvy. Your current GI is not following celiac disease diagnostic protocol as directed, not just by celiac researchers, but the American GI Association.  Get copies of all your medical records and lab reports.  

You might not have celiac disease or you might have it.  Hard to say.  But going gluten free and re-checking in four weeks might not change the result.  The tests are just not that accurate.  

 

[Carrie1024]

I don't yet know why I am hypothyroid. I am meeting with an endocrinologist tomorrow. My Primary only ran TSH and Free T4. TSH was high and she put me on levothyroxine to help my metabolism. 

I'm 40 and just starting to unravel why i have hated my body (inside and outside) for all of my life. Be it celiac, hypo or something else, I have always known something was just not right. 

[frieze]

yup, do not get me started on bad docs!  if the numbers do go down.  is she going to dx you?  or is she going to require that you go back on gluten and start the testing?  idiot.

[cyclinglady]

1 hour ago, Carrie1024 said:

I don't yet know why I am hypothyroid. I am meeting with an endocrinologist tomorrow. My Primary only ran TSH and Free T4. TSH was high and she put me on levothyroxine to help my metabolism. 

I'm 40 and just starting to unravel why i have hated my body (inside and outside) for all of my life. Be it celiac, hypo or something else, I have always known something was just not right. 

Just putting you on thyroid replacement without looking for a cause is wrong in my non-medical opinion.  Did your doctor even feel your neck?  Ask for antibodies testing.  

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Knowing if you have Hashimoto’s Thyroiditis can help you determine other potential issues down the line.  Once you develop one autoimmune illness, you can develop more.  This does not always happen, but it can and does.  

[Carrie1024]

my IGA and IGG were Deamidated. 

 

 

[cyclinglady]

That is a relief!  But it is still weird that your GI wants you to go gluten free and then retest in four weeks.  Normally, a doctor would have you remain on gluten and then retest to see if you get a more positive response in the lab test (at least that has occurred often per forum members).  Are you sure she said to go gluten free?  Did she provide a packet or recommend a book as to how to actually avoid gluten?  The learning curve to the diet is steep.  Odds are you will not actually be gluten free at all.  It is one reason leading experts recommend follow up testing three to six months after a diagnosis.  Avoiding gluten is really hard.  It is not just giving bread and pasta.  You can get glutened by a kiss, your lipstick or a shared toaster.  As a result, your test result might not decrease or increase.  Who knows?  

If you do actually have celiac disease, going gluten free prior to the conclusion of all celiac disease testing, can mean that if you need to go back on to gluten, chances are you will react more severely.  Most celiacs who undergo a gluten challenge for an endoscopy or blood tests are very miserable.  Not many actually complete the challenge (again, based on what has been reported on the forum).  

I think that is why most of us are in disbelief.  We can not imagine after going gluten free and having to go back on gluten.  Our hearts go out to anyone who has to undertake a gluten challenge.  

I hope you are able to figure it out.  You deserve to feel as good as you can!  

 

[decclj]

I had a high positive blood result and a negative biopsy the Gi said maybe it's something to do with wheat and told me to go on a gluten free diet

[cyclinglady]

4 hours ago, decclj said:

I had a high positive blood result and a negative biopsy the Gi said maybe it's something to do with wheat and told me to go on a gluten free diet

That diagnosis can be so frustrating.  Unfortunately, intestinal damage can be patchy and therefore, easy to miss.  Please, please take your doctor’s advice about going gluten free, and in six months consider asking to get your antibodies retested.  That and gauge how you feel!

 

[Carrie1024]

Next steps:

I went gluten free for a month. I definitely felt "less worse" if that's a thing. meaning i wasnt skipping around like mary sunshine but my chronic stomach ache went away. Also after i had the latest blood draw i ate half a soft pretzel and within 20 minute had a mid numbing migraine that lasted 2 days.

ANWAY: my repeated bloodwork showed no improvement. in fact some of my numbers actually increased. My doc recommended a biopsy or a consult with the celiac center at columbia. 

Thoughts??

[frieze]

a month is not long enough, especially with the steep learning curve of the gluten free diet.     keep gluten free for at least 6 months, retest, and perhaps you can find another doc that will dx on the +gene, improved condition and lower numbers.

[cyclinglady]

Get to another GI who is celiac-savvy.  Your numbers are going up.   A month is not long enough for any celiac to heal.  All leading celiac centers recommend three to six months.  Why?  Because the learning curve for the diet is steep.  It is HARD to make correct dietary changes.   You are probably not really gluten free at this point.  Get an endoscopy as blood tests are not perfect.  Intestinal biopsies are still the gold standard in diagnosing celiac disease.  STILL.  

Later, report this doctor who does not follow the GI Association guidelines in diagnosing celiac disease.  Google it.   Doctors need to keep up.  This GI does not sound like he or she reads any medical journals or subscribes to medical news.   

[Ennis-TX]

I know it is a bit abnormal but by example after my last exposure I spent 7 weeks with diarrhea, I assume this was my raised antibodies and how long they took to go down. They do say 2-6 weeks for some symptoms to go away because of antibodies, intestinal damage can take 6 months to 2 years to heal. You can also get various other AI issues and or nervous system issues that can complicate matters.
Every mess up can keep causing more damage and delay healing for weeks-months.

[Carrie1024]

I did some asking around and the Celiac center at Columbia has rave reviews. Luckily I live less than an hour from NYC so I'll be headed there next. 

[frieze]

excellent!

[Carrie1024]

I have thyroid antibodies. They are actually pretty high. Over 600 for Thyroid Perioxidase Ab. The soonest I can get into Columbia is January  I started eating gluten at 1 meal each day and i am miserable. constipated with occasional urgent diarrhea, headaches, my skin looks like crap, bloated. Just miserable. I'm going to try to find a celiac savvy doctor that can do the endoscopy sooner. I also have 2 kids and since I carry both genetic markers I want a dx so I can demand they be tested.

[cyclinglady]

Sounds like a good plan.  

I can share that my thyroid antibodies were once over 2,000.  On the gluten free diet to treat my celiac disease, my thyroid antibodies went way down and my thyroid enlargement and nodules went away.  My thyroid antibodies do increase if I get a gluten exposure now.  That is something to look forward to.  I can see why the thyroid websites recommend the AIP (Autoimmune Paleo) diet which happens to be gluten free.   Scripps in San Diegomis crowd funding to test the AIP diet in Hashimoto patients.  This diet worked in Inflammatory Bowel patients (Crohn’s and Ulcerative Colitis).  They achieved a 78% remission rate in six weeks based on IBD bio markers.  

Food can heal!  

[Carrie1024]

how much gluten do i need to be eating before my endoscopy? It is scheduled for early january. I went back to my normal eating habits and of course I am miserable  So how much do i need to be eating per day to ensure my test is still accurate but hopefully lessening how awful i feel?

 

[Ennis-TX]

12 minutes ago, Carrie1024 said:

how much gluten do i need to be eating before my endoscopy? It is scheduled for early january. I went back to my normal eating habits and of course I am miserable  So how much do i need to be eating per day to ensure my test is still accurate but hopefully lessening how awful i feel?

 

1-2 slices of bread a day for 2 weeks, some get by with a few tsp of vital wheat gluten a day. You can try eating at night and sleeping off the worst of it.

[cyclinglady]

Yep, Ennis gave you the standard length of time.  If you can stand it, add an extra week for insurance.  But that is not based on medical evidence, but my own personal opinion (though the range used to be 2 to 6 weeks).    All celiacs are a bit different and I am a bit cautious or conservative.  

Watch this diet by a leading expert, Dr. Murray at the Mayo Clinic:

http://celiacblog.mayoclinic.org/2015/11/23/was-my-gluten-challenge-too-short/?_ga=2.103590147.2044139853.1544293418-1633328668.1540519767