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nvsmom

Member Since 12 Jun 2012
Offline Last Active Yesterday, 09:14 PM
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#923214 Results All In - Still Confused...

Posted by nvsmom on 08 July 2014 - 05:49 PM

I you get a copy of the biopsy report, you could start a new thread in the per diagnosis board and some people there can help you interpret the results. Some of them have done a lot of research and reading in that area.

Best of luck with the diet. Try to keep a journal too as some celiac symptoms change so slowly that you hardly notice it until you look back on how things used to be.
Best wishes. :)
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#923151 Results All In - Still Confused...

Posted by nvsmom on 08 July 2014 - 09:22 AM

The reason the doctors want to repeat the biopsy is because they think it might be celiac disease but they didn't find the proof. They need more damage to happen during the next 6 months before they try again to find the damage in a biopsy. For someone who probably has celiac disease, that just seems cruel to me.  :(

 

He has a positive tTG IgG. That test is 95% specific to celiac disease; that means that out of 100 positive tests, only 5 have positive results caused by something else, and in the tTG IgA I know those causes are diabetes, crohn's, colitis, thyroiditis, liver disease, or serious infections... Does he have any of those things?  I don't know why the doctor would assume it is just an infection when chances are (95% chance) that it is celiac disease!

 

In fact, he is lucky that the tTG IgG even caught him. The sensitivity of the tTG IgG is only 40%, so it regularly misses 60% of celiacs.

 

This website is where I got my info:

http://www.jfponline...tt_news]=172034

Here's a site on pediatric cases:

http://pediatrics.aa...2-3765.full.pdf

And more info on testing (pages 8-12) including the Marsh scores of the biopsy - do you have his results?  Were they perfect or did they show Marsh 1 or 2 damage?

http://www.worldgast..._long_FINAL.pdf

 

Can you get one more blood test?  The DGP IgG (deaminated gliadin peptides) is a new test and it is noted to be the superior test for detecting celiac disease in toddlers. The sensitivity is 70-95% so it has a pretty good chance of catching celiac disease, and it's specificity is as close top 100% as you can get. If he has a positive DGP IgG, celiac disease is a sure thing.

 

If you redo the biopsy in 6 months, the gluten challenge requirements for an adult are 1-2 slices of bread per day, or equivalent, for 2-4 weeks prior to the procedure. If blood tests are done at that time, he'll need to do the gluten challenge for 8-12 weeks instead (3 months).  

 

I would try the gluten-free for 3 months and then reintroduce gluten for blood tests, or go gluten-free for 5 months and then reintroduce gluten for the biopsy.  Keep a symptom and food journal for him. Take note of any changes. If things improve, that is an answer right there. If you retest, I would do the blood tests again (if he can hack 3 months on gluten) along with the biopsy.  When the biopsy is done, make sure at least 6 samples are taken; celiac damage can be spotty so taking more samples makes it more likely the disease will be caught.

 

I believe that right now, Dr Fasano (a leading celiac disease researcher) suggests that a celiac meet 4 out of 5 of this diagnostic criteria:

  1. Celiac symptoms.
  2. Positive blood tests.
  3. Positive genetic tests.
  4. Positive Biopsy.
  5. Improvement of symptoms on the gluten-free diet.

Right now he has met 3 criteria. If he improves on the gluten-free diet, that's 4 and that is celiac disease.  Keep in mind, this is just a doctor's way of sorting us patients. I did not have a biopsy or genetic testing but that doesn't change the fact that I have celiac disease.  LOL ;)

 

And knowing celiac disease is a gentic disease, you should probably get the rest of the family tested - not all celacs are symptomatic.

 

Good luck with whatever you decide to do.


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#923145 What Tests Do I Need

Posted by nvsmom on 08 July 2014 - 08:43 AM

Welcome to the board. :)

 

 

Hello,

 

I think I have a problem with gluten.  I had a baby in February.  Shortly after his birth I started having sulfer burps that would start between 6 to 9 pm followed by diarrhea until 10 am the next day.  At first I thought I caught some stomach bug but after a few times noticed a pattern.  This problem has gotten more frequent and now I'm experiencing bloating and pain when eating and drinking.  I found a thread about nocturnal diarrhea on this site one night.  As I read the posts I almost started to cry.  I could have written any of them.  I decided to cut out gluten the next day.  All my symptoms went away within a few days.  Then I read that you need to eat gluten for the tests to come out accurate.  I began eating gluten again.  That is when I started having a lot of pain when eating anything with gluten.  It actually took about 3 days for the symptoms to come back.  I don't know what tests my doctor will order but I stopped eating gluten again because it hurts so much and I can't take very good care of my children with the symptoms.  I also passed a kidney stone about a week ago and have another still there.  I don't know if this could be related or not.

 

What I need to know is this:

 

How long before testing do I need to eat gluten?

 

What tests are important to have?

 

Is there any way to eat gluten and calm the symptoms of gas, pain and diarrhea so I can function well enough to care for my children?

 

Is there a problem with nursing a baby with Celiac Disease?

 

Congratulations on your little one. Many celiacs find their disease is kicked off by a traumatic or major health event - pregnancy and childbirth has done that for more than one person around here. :(

 

To answer your questions:

For the most accurate tests, you need to be eating gluten (equivalent of 1-2 slices of bread per day) in the 8-12 weeks prior to blood tests, or the 2-4 weeks prior to an endoscopic biopsy.  Since you have mostly been mostly eating gluten, get tested immediately.  As you have found, it can be difficult to next to impossible to reintroduce gluten after being gluten-free for a time. Get tested now.

 

The available tests are:

tTG IgA and tTG IgG - most common tests

DGP IgA and DGP IgG - newer tests

EMA IgA - detects more advanced disease

total serum IgA - a control test

AGA IgA and AGA IgG - older and less reliable test

Endoscopic biopsy

 

To calm symptoms, do not overdo the gluten. 1-2 slices of bread is all you need - that could be half a sanwich, a muffin, or a small serving of pasta.  Some find eating gluten at night is helpful as it doesn't wreck your day... just your night.  :( A gluten challenge is needed to make you sick so the tests will detect celiac disease, if you are well they won't work... It's a bad system.

 

There is no problem nursing a baby with celiac disease, as far as I know.  Babies who have celiac disease may have issues with breast milk (gluten) if the mother is consuming gluten though.  Be aware that celiac disease is genetic and if you have it your little one has about a 1 in 10 chance of getting celiac disease. If she is consuming gluten, you will need to test her every couple of years or immediately if she shows symptoms.  Young children are harder to get an accurate test from so if tests are negative, and you see signs of celiac disease, she might have the disease in spite of what the tests say.

 

Here is some good reading:

http://www.worldgast..._long_FINAL.pdf

http://subscribe.imn...tt_news]=172034

http://pediatrics.aa...2-3765.full.pdf

http://gut.bmj.com/c...-306578.long#T2

 

Best wishes.


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#922509 Soap Question

Posted by nvsmom on 03 July 2014 - 10:00 AM

It is possible but usually if you rinse your hands very well, you should not have soap on you anymore.  It could be cc but I am guessing that the most likely culprit is just that you are still fairly new to the gluten-free diet and there are still autoantibodies causing you issues. It can take weeks to years for the body to stop producing autoantibodies, and then it can take months to heal.  I was still still taking two steps forward and one step back at 6 months gluten-free, and I was still improving at over 9 months gluten-free.  You may just need to give it more time.

 

In the meantime, keep an eye out for possible cc as I could be wrong in your case (it just sounds like you are being very careful already).

 

Best wishes.


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#922375 Blood Testing

Posted by nvsmom on 02 July 2014 - 02:01 PM

No problem. Two years ago someone on this board gave me all the advice I passed on to you.  It's always good to hear from other people going through the same things. ;)

 

Generally speaking, a positive celiac test is a positive and you have celiac disease.  False positive are rare. It's the tTG IgA which seems to have the most, and that's at about 5%. Those false positive are caused by something, usually a serious infection, thyroiditis, diabetes, crohn's, colitis, or liver disease; it's usually a very weak positive in those cases.  (Your result is not crazy high but it's not overly weak either.) Don't believe the doctor if he just tries to dismiss it - and some do - as a positive is caused by something and it is usually the obvious (celiac disease).  

 

Think of it like a pregnancy test.  Sometimes those double lines are faint (weak) and other times they are dark, but they both mean the same thing will happen in 9 months.  ;)

 

Here's some info on the tTG IgG.  The specificity of the tTG IgG (how often a positive is caused by celiac disease is pretty high.  http://www.jfponline...tt_news]=172034

 

Pages 8-12 of this report has info on testing but does not include the tTG IgG - I presume it is because it has such a low sensitivity. http://www.worldgast..._long_FINAL.pdf

 

And I completely understand about denial.  :)  Most of us have been there. You are in good company here.

 

Good luck with the H.pylori!


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#922064 Diagnosed Yet Skeptical

Posted by nvsmom on 30 June 2014 - 10:27 AM

Welcome to the board.  :)

 

You've been dealt a tough hand with a double diagnosis.  Sorry to hear about that.  :(  You are correct that Crohn's can cause villious atrophy in the small intestine just like celiac disease can.  The problem lies in that the blood tests for celiac disease are not fool proof.  The sensitivities (the percentage of celiacs found to be positive) of the various tests can range from between 20% to about 100%, with most being somewhere around 85% or so.  Do you know what tests they ran on you?  The more they run, the more accurate you can be sure the results will be.

 

This is the full panel:

tTG IgA and tTG igG

DGP IgA and DGP IgG

EMA IgA

total serum IgA (a control test as 5% of celiacs are too low in IgA to have accurate IgA based celiac tests (like tTG IgA))

AGA IgA and AGA IgG (older and the least reliable of all the tests)

 

You would need to be eating gluten in the 2-3 months prior to testing. If you are on any type of steroid, that can cause false negative test results.

 

Look at page 12 of this report for more info: http://www.worldgast..._long_FINAL.pdf

 

Some people are positive only in the IgA based tests, others only in the IgG based tests (even with normal levels of serum IgA). Others only have positive DGP tests and negative tTG tests, or vice versa.  And yet other celiacs have all negative blood tests and a positive biopsy (or vice versa).

 

I would guess that you have celiac disease, but the only way to be sure would be to have a positive blood test (did they run them all?)  OR have another biopsy run after you have been gluten-free for a good 6 months to look for signs of healing.

 

Most people need to give the gluten-free diet a few weeks or months to see benefits.  Many have a couple of improvements in the first few days, like less bloating, but most symptoms take a while to clear up.  I had symptoms that were still improving after being gluten-free for 9  months.  In order to reap the benefits of the gluten-free diet, you will need to be 100% gluten-free though.  no rolls, check your spices and sauces (like soy), avoid cc in your kitchen (like in the butter container, jam jar, or sugar bag).  Small amounts of gluten can stop any improvements and make it seem as though the gluten-free diet is not helping, when in fact the person is not gluten-free.... It's a strict and anal diet, but it could help you feel well, as well as prevent future health complications that would arise from living in that constant state of systemic inflammation.

 

My suggestion would be to make sure you had all celiac disease tests run before going gluten-free any longer. I would then give the gluten-free diet a try for a good 6 months and then redo the biopsy in the new year to check for villi improvements (if you have not noticed health improvements on the diet).

 

Best wishes to you.  I hope you feel better soon.


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#921935 Struggling With Being Left Out

Posted by nvsmom on 28 June 2014 - 05:17 PM

It can be a pain, but I find that if I get in the mindset where I bring food for myself, and sometimes for everyone, it just goes so so much easier. I find it is good etiquette to bring something along when you go to someone's house anyways, so instead of bringing wine, I bring food, then I'm never a self centered pain to invite over.  ;)

 

It's true that we have lost convenience foods when we are out, but you can plan ahead... Planning ahead is the key. 

 

Best wishes.


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#921283 Mystery Continues....

Posted by nvsmom on 23 June 2014 - 09:12 AM

Poor little guy.  :(  Unfortunately doctors do that frequently. We are told to go home, eat gluten, and come back when you are sicker so they can have proof (via blood test or endoscopy) that we are sicke enough to go on the "restrictive and hard to follow" gluten-free diet.  :rolleyes:  It is just cruel...

 

A low serum IgA means that any IgA based celiac testing (tTG IgA, DGP IgA, EMA IgA) done will probably be a false negative because not enough IgA is made to register positive antibody levels. That fact that he had a positive tTG IgA when he is low in IgA is very significant! In over two years on this board I have only seen one or two other adults able to test positive on a IgA based celiac test while deficient in IgA - if he had normal IgA levels, his tTG IgA would have probably been sky high!

 

The ONLY tests that could be used to test for celiac disease for your son are:

tTG IgG

DGP IgG

EMA IgG (hard to find)

AGA IgG (not very reliable test)

 

Toddlers are harder to get an accurate result from because the disease is still in the early stages. False negative rates will be higher. I suspected celiac disease in some of my kids, and even though their tTG IgA was negative, I made them gluten-free anyways because I knew that it misses up to 25% of celiacs (including the ones with higher IgA levels).  My doctor said it was a coincidence that their symptoms improved within a few months of oing gluten-free.   :rolleyes:

 

He could also have the endoscopic biopsy done, but that test missed up to 1 in 5 celiacs... not that great.

 

Plus, IgA deficiency is more common in celiacs than in the regular population - that says something too.

 

You can not rule out celiac disease yet.  I think celiac disease is a stronger possibility now that you know his IgA is low and he still managed to make a positive tTG IgA at one point.  I would advise to get all the IgG based celiac disease tests run, and maybe do the endoscopy. I would strongly suggest that he go gluten-free at the end of it all regardless of what the tests say. He could have false negative tests (not uncommon for a young age) or he could have non-celiac gluten intolerance (NCGI) which has the same symptoms as celiac disease but can't be detected with blood tests. Going gluten-free can not hurt, it could only possibly help.

 

You might want to test the rest of the family - that could offer more answers too.

 

Best wishes.


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#918480 Help Me De-Code These Results

Posted by nvsmom on 30 May 2014 - 04:54 PM

The Tissue transglutam Ab IgA is the anti-tissue transglutaminase immunoglobulin A (tTG IgA) and indicates there is an attack going on in your endomysial linings of your intestines. Over 100 could be very high (like 200 or 500) or it could be 101. That does seem high to me for being gluten-free - I would suspect some cross-contamination with a number that high.

 

IgA is your total serum immunoglobulin A, which just shows how active the immune system that works in your mucosal linings are.  They test it because 5% of celiacs are deficient in IgA which would cause all IgA based tests (like the tTG IgA) to result in a false negative.

 

Your endomysial antibody titre (EMA IgA) is quite high at 1:160. I believe normally is usually 1:10 or lower. The titres are doubled each time they are run so it would go up like 1:20, 1:40, 1:80, 1:160. 1:160 is about the highest I ever see that test.  After being an untreated celiac for many decades, mine was 1:40.  The EMA IgA tends to come down faster than the tTG IgA.  You get EMA IgA testing positive when your body already has significant intestinal damage caused by tissue transglutaminase antibodies (tTG). Basically, your body senses gluten, and that the intestines are damaged, so it sends in the EMA to basically wipe out the top layer of your villi to get rid of the problem. The EMA IgA is rarely positive in early celiac disease.... or in those who eat gluten-free.

 

You definitely have celiac disease. The EMA IgA is 98-100% specific to celiac disease, meaning that 98-100% of the time, a positive test is caused by celiac disease. The tTG IgA is also highly specific to celiac disease and tends to only give (rare) false positives for those individuals with a weak positive test result... which is not you.  See this report (page 12) for more details: http://www.worldgast..._long_FINAL.pdf

 

If those are your results after 4 months gluten-free, I would check your diet carefully for gluten.  I would guess that you are getting small amounts of gluten somewhere. Check soy sauce, worchestershire sauce, teriyaki and BBQ sauces, all seasonings, boullions, old baking supplies (like sugar that has had flour coated measuring cups dipped into it), medications, vitamins, lotions, soaps and shampoos (which could get into your mouth), snacks, and be extra careful eating out. You will need a new toaster, some new wooden spoons, and maybe a new collander or pans if they are damaged and could have gluten in the cracks.

 

Best wishes and welcome to the board.  :)


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#918378 Should I Push For Celiac Specialist....

Posted by nvsmom on 29 May 2014 - 07:56 PM

It would make sense to me to see the specialist, but I never did see a specialist so I don't know how helpful it would be. I guess it depends on the doctor, some are better than others.

 

I'm sure someone else will chime in with more help that I can give.

 

Good luck!


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#918201 Igg Against Ttg 18 Month Old Babies Results....

Posted by nvsmom on 28 May 2014 - 05:25 PM

Constipation? Oh yes... It is way more common than doctors seem to think.  Heck, I had over 35 years of it!  LOL

 

Ear infections(and sinus and chest infections) are another problem related to celiac disease.


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#917904 Igg Against Ttg 18 Month Old Babies Results....

Posted by nvsmom on 26 May 2014 - 07:02 PM

A weak positive tTG IgA can, in a small minority of positive tests (<5%), indicate thyroiditis, diabetes, crohn's, colitis, chronic liver disease or a serious infection.... But 95% of the time a positive means celiac disease. Both the tTG test are for autoantibodies to the endomysial lining of the intestines; the IgA part of the immune system is tested more often ( i think) because it is the part of the immune system that is found in our mucosal linings (intestines, mouth) whereas the IgG version of the test is more of a systemic test. Both tests can diagnose celiac disease though.

As far as I know, the tTG IgG has a similar, to slightly lower, false positive rate that that of the tTG IgA. With celiac disease like symptoms, it is probably celiac disease but the other diseases I mentioned should be considered if she has other health problems.

Generally, a positive celiac disease test means celiac disease, sort of like a positive pregnancy test means one is pregnant - there is usually no wiggle room there.

Best wishes. :)
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#917893 What Do I Do?

Posted by nvsmom on 26 May 2014 - 05:03 PM

I'm glad you are feeling better in spite of the mediacl advice you received. That's a crying shame that they did not share the correct results of your biopsy with you! :angry:

 

It sounds like celiac disease to me too.  I think you did the right thing going gluten-free when you did.  If you decide to do more testing, you'll need to resume eating gluten (equivalent of 1-2 slices of bread per day) for 2-4 weeks for the biopsy, and 8-12 weeks for the blood tests. The longer the better.  :(

 

If you get the blood tests done, these are the ones to ask for:

  • tTG IgA and tTG IgG (most common tests)
  • DGP IgA and DGP IgG (newer tests which areoften better for diagnosing "early" celiac disease)
  • EMA IgA (detects more advanced celiac disease, and is rarely positive if the tTG IgA is negative)
  • AGA IgA and AGA IgG (older and less reliable tests)
  • total serum IgA (a control  test)

This report has more info on the tsets on pages 8-12: http://www.worldgast..._long_FINAL.pdf

 

Good luck with whatever you decide to do.  :)


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#917821 Igg Against Ttg 18 Month Old Babies Results....

Posted by nvsmom on 26 May 2014 - 06:25 AM

A positive tTG IgG probably means celiac. When you see the doctor ask for the rest of the celiac tests to be run: tTG IgA, DGP IgA, DGP IgG, total serum IgA, EMA IgA.

 

Good luck!


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#917390 Blood Transfusion And Blood Panel

Posted by nvsmom on 23 May 2014 - 02:56 PM

I had a postive on endomysial Antibody IGA and a TTG score of 17.

 

The blood transfusion came out of nowhere!  I was on day 1 of my period. (Which I bleed through a tampon in less than an hour for 2 full days at least and have this cycle every 17-23 days).  
 Hyper and excited to teach a new boot camp class in that area and suddenly got dizzy and dropped.   I was taken to the hospital and my hemoglobin was a 7.6.   Since the transfusion I have been able to carry on my normal life but I need more sleep, I'm foggy mentally and lost some drive.  I haven't felt even 50% of what I used to feel. 

Before that I bounced around on top of the world.  I hated to even sleep.  I was mad when I had to get the 4-5 hours my body needed. 


I guess I do have some GI things but I thought it was normal.  I feel bloated after a huge meal. ( I was eating 3000 calories a day because I was exercising 2 hours or so every day with classes).     Maybe gassy too.  But I eat triple the amount of veggies that normal people eat also.   

 

A positive EMA IgA is caused by celiac disease 99-100% of the time.  If you combine that with a positive tTG IgA, then a celiac diagnosis is a sure thing.  :(  This report (page 12)  has info on the tests and shows that the specificity (what percentage of positive results are caused by celiac disease) of the tests you had is quite high. http://www.worldgast..._long_FINAL.pdf

 

That's one of the problems when it comes to recognizing celiac symptoms is that many are insidious, and creep up so slowly that we don't notice - feeling poorly (with bloating and stomach aches) becomes the new normal.  Once your anemia issue is addressed, I bet you'll be pleasantly surprised how you feel better than you did in the past.

 

I do hope the doctors have figured out what caused your sudden anemia and are addressing the cause, and not just treating the problem.  Hopefully it was celiac disease related and it will improve after being gluten-free a few months.

 

Hang in there. It's a lot to wrap your head around but remind yourself that it could be worse.  We have a disease that requires a shift in our diet to treat. No dangerous medications or surgeries - we just have to watch what we eat. You sound like someone who was already health conscious so I bet you will be able to make the shift to gluten-free pretty smoothly... Just don't go gluten-free until after the GI appointment, if you can wait.

 

Best wishes.


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