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I've seen two different doctors over the last 10 years who both said I have Celiac but after being gluten free for several months and taking all of their herbal pills I didn't really feel that much better.  I dug up my last results from 2015 and was curious if they look normal, abnormal, highly Celiac?  I've tried to find answers by reading articles online but can't really find what I was looking for.  Here's the relevant (I think) information:

Transglutaminase AB IGA 18.0  - doesn't provide a range, just states out of range

Transglutaminase AB IGG <.6  - doesn't provide a range, just states in range

Glucose serum 110  65-99 range

Insulin 25  0-17 range

Gliadin AB IGA 16.0  - doesn't provide a range, just states out of range

Gliadin AB IGG 74.0  - doesn't provide a range, just states out of range

If anyone has any thoughts on this it would be much appreciated, thanks!!

 

Edited by croco
added ranges
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Test results show ranges as well. Can you post those as well? It would say  high is > 10 or whatever.

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Why don't you believe two doctors telling you that you have celiac disease?  Were they actually Medical doctors?  Granted, you should have been referred to a GI for an endoscopy to obtain biopsies.  Was this ever suggested?  

Celiac disease can take months or YEARS to heal on a gluten free diet.  Seriously!  Why?  The learning curve for the gluten-free diet is very steep.  Even though the small intestine can heal fast, gluten exposures (e.g cross contamination, going out to eat) can create set-backs.  Don't forget that most celiacs have systemic damage (way beyond the gut) and things like nerve damage may be permanent or take years to heal.

Looks like you might be in your way to diabetes too.  ?

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Yes, he said I was pre-diabetic.  They were both MD's who transitioned to the holistic side.  I followed the first program for 6 months and the second one for 3 months.  Didn't really feel much better and spent many $1000's on supplements and appointments - none of it covered by insurance.  I've never really bought into the holistic approach so when I didn't see results I discounted their advice.  My MD said I could try the holistic approach but I would likely just end up out of pocket a lot of money without any results - which is basically what happened.  And I've never had luck on the traditional side either (which is why I pursued the holistic side).  Just very frustrated.  Been working on this for 10+ years and I'm in the same boat today as I was 10 years ago (less $7,000 and countless medical appointments).  I've read many online articles and forums but this is my first posting anywhere - guess this is my last option.

Edited by croco

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3 hours ago, croco said:

Transglutaminase AB IGA 18.0  - doesn't provide a range, just states out of range

Transglutaminase AB IGG <.6  - doesn't provide a range, just states in range

Glucose serum 110  65-99 range

Insulin 25  0-17 range

Gliadin AB IGA 16.0  - doesn't provide a range, just states out of range

Gliadin AB IGG 74.0  - doesn't provide a range, just states out of range

If anyone has any thoughts on this it would be much appreciated, thanks!!

First off, I am not a doctor, just some stranger on the internet. When it says 'out of range' it means high. So your TTG IGA is high, DGP IGA is high, DGP IGG is high. I imagine the reason your doctors said you had celiac is because failing three tests means you have celiac. I don't think any other disease can cause so many fails and your DBP IGG is off by more than 5x, which is hard to be anything else. So, my uneducated opinion is that you definitely have celiac.

As to the solution to celiac. Herbs and medicines do not fix celiac. The only fix for celiac is strict adherance to the gluten free diet. No cheating whatsoever. This means you have to treat every little molecule of gluten as something to be avoided at all cost. It can take years to recover.

If you're tired of dealing with doctors and you really want proof that you have celiac, then go to walkinlab.com, sign up, and buy the "Celiac Discease Comprehensive Antibody Profile" blood test. Go to your nearest labcorp with the test requisition that you print out from the walkinlab website. Get the blood test, wait a week then print out your results from the website. You now have a baseline with ranges. Go on an extremely strict gluten free diet and keep it to simple foods like homemade stews and well cooked veggies. After two months, get the blood test done again. If your numbers have started to go down you have your proof. You will also have a way to monitor your success at the gluten free diet by getting your own blood tests done. The only reason I'm suggesting this is because you seem to need the proof. I get my blood tested every month because going gluten free was not enough to get my numbers down. I am on a very strict and unhealthy liquid diet until I get my numbers to reach normal (6 more weeks at this rate).

Anyway, it can take years for your symptoms to go away so no positive reaction to the gluten free diet can mean one of three things:

1.  Your getting glutened

2.  The food your eating is too irritating to your insides

3.  Refractory celiac. I doubt you have this one as you only went gluten free for several months.

 

Good luck. And remember, I'm not qualified for medical advice.

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We are glad you found us Croco!  Tessa has given you some good advice too.  Changing your diet is hard, but not bad once it becomes a habit.  The benefit is feeling so much better!  Just simple Whole Foods (veggies, fruit, eggs, meat, fish, dairy, nuts, etc.) can improve your health.   Read our Newbie 101 thread.  It has lots of valuable tips.  

I also encourage you to read this site Blood Sugar 101 which is well-written and free!  You can buy the same information in a book form.  Learn how to control your blood sugar by reducing your carbs, based on eating to your meter.   I have both diabetes type 2 and celiac disease!  

http://www.phlaunt.com/diabetes/

You will get better!  

 

 

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Thanks for the feedback.  I like the idea of the monthly blood work.  I've never had an endoscopy.  I'm wondering if that's something I should do.  If so, should I keep eating gluten until I get those results.  Or should I just skip that procedure and go gluten-free immediately and start doing my own blood work every month starting tomorrow?

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1 hour ago, croco said:

Thanks for the feedback.  I like the idea of the monthly blood work.  I've never had an endoscopy.  I'm wondering if that's something I should do.  If so, should I keep eating gluten until I get those results.  Or should I just skip that procedure and go gluten-free immediately and start doing my own blood work every month starting tomorrow?

If you decide to get an endoscopy from a gastroenterologist you have to be eating gluten every day for a few weeks. It's up to you whether or not to get it.  Officially a high on any one celiac blood test should result in a gastro doing an endoscopy to make an official diagnosis. I don't know how much of that is to rule out cancer if at all. With your numbers even a clear endoscopy would probably lead to them saying to go gluten free since you have high numbers and symptoms.

I got the endoscopy, but I wasn't waiting for a while. Doc said go to a gastro, gastro tested for many things, celiac was found, endoscopy was done and I went gluten free. The process was very straightforward in my case. That's not the case for many other people.

And I still visit my gastro once a year. And I give her all of my blood tests for her records.

 

Almost forgot: insurance does not pay for blood test you order via a website.

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23 hours ago, tessa25 said:

Test results show ranges as well. Can you post those as well? It would say  high is > 10 or whatever.

 

19 hours ago, tessa25 said:

If you decide to get an endoscopy from a gastroenterologist you have to be eating gluten every day for a few weeks. It's up to you whether or not to get it.  Officially a high on any one celiac blood test should result in a gastro doing an endoscopy to make an official diagnosis. I don't know how much of that is to rule out cancer if at all. With your numbers even a clear endoscopy would probably lead to them saying to go gluten free since you have high numbers and symptoms.

I got the endoscopy, but I wasn't waiting for a while. Doc said go to a gastro, gastro tested for many things, celiac was found, endoscopy was done and I went gluten free. The process was very straightforward in my case. That's not the case for many other people.

And I still visit my gastro once a year. And I give her all of my blood tests for her records.

 

Almost forgot: insurance does not pay for blood test you order via a website.

I'm no specialist but I do know that an encospy doesn't tell you if your just allergic to something the herbal medicine will work if you have thin egg with it that helped me.

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These are the results from walkinlab:

 Deamidated Gliadin Abs, IgA           21  HIGH (20-30 weak positive)

Deamidated Gliadin Abs, IgG           38  HIGH (>30 moderate to strong positive)

t-Transglutaminase (tTG) IgA          13  HIGH (>10 positive)

t-Transglutaminase (tTG) IgG           2  NEGATIVE

Immunoglobulin A, Qn, Serum          271  POSITIVE ABNORMAL

Wish I knew if these were a "little" bad or "a lot" bad.

Edited by croco
corrected result

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Are you sure TTG IGA was 1?

Anyway, a high on any one test should lead to a gastroenterologist doing an endoscopy to confirm celiac. Your not supposed to go gluten free until after all testing is done.

Your results show high for dgp iga and dgp igg.

Not a doc, my opinion only.

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I changed from 1 to 13.

Decided to forgo the endoscopy.  Figured all the high scores were enough to warrant going gluten free.

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If you need any suggestions for gluten free equivalents just ask. Lots of different opinions on foods here.

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On 5/22/2017 at 9:14 AM, croco said:

These are the results from walkinlab:

 Deamidated Gliadin Abs, IgA           21  HIGH (20-30 weak positive)

Deamidated Gliadin Abs, IgG           38  HIGH (>30 moderate to strong positive)

t-Transglutaminase (tTG) IgA          13  HIGH (>10 positive)

t-Transglutaminase (tTG) IgG           2  NEGATIVE

Immunoglobulin A, Qn, Serum          271  POSITIVE ABNORMAL

Wish I knew if these were a "little" bad or "a lot" bad.

These results, assuming you have been on a gluten free diet since the original tests in 2015, likely mean you are still being exposed to gluten which is why you still feel s$#&ty. 

Go see a GI or go on a non processed gluten free no going out to eat strict diet for 3 months and see how you feel. 

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My question was were you 100% gluten free, as in tossed out your contaminated cook ware, cutting boards, and used clean non contaminated cook ware, utensils etc. Did you get rid of all contaminated spices, condiment, jars with crumbs, clean out the house check your lotions, shampoo, etc. Stop eating out, changed to a whole foods diet. and supplemented for the common nutrients that cause issues for celiacs? Did you get tested for nutrient levels? Did you try removing dairy, and oats? On another note many of us develop food intolerance and random issues with other foods that normally has to be identified by keeping a food jounel and going through a elimination diet seeing how you feel eating different foods and eliminating the ones that cause you to feel bad.

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