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nvsmom

Member Since 12 Jun 2012
Offline Last Active Today, 08:06 PM
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#914426 Can I Have Gluten Intolerance?

Posted by on 29 April 2014 - 09:16 AM

A DGP IgA most likely points to celiac disease, and since your symptoms are improving after only 40 days on the gluten-free diet, I would guess with confidence that you have celiac disease. :(

 

Keep in mind that there is a very very small minority of celiacs that were negative on the genetic tests but still had a positive celiac test. It's unusual, but it can happen. Your diet will not affect the results.

 

Good luck with the 14 day gluten challenge and biopsy. Try to ensure your doctor takes at least 6 samples for biopsy.  I hope you find the answers you are looking for.


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#913687 Possible Celiac?

Posted by on 23 April 2014 - 04:52 PM

Thanks for the welcomes.

 

This is the coolest uncool club that I never wanted to be a part of...... :P

LOL  :lol:  Hope you feel well soon!


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#913685 Preparing For Blood Test Need Help!

Posted by on 23 April 2014 - 04:48 PM

Welcome to the board.  :)

 

Most specialists agree that a gluten challenge of 8-12 weeks (the longer the better), while eating the equivalent of 1-2 slices of bread per day, is best for accurate celiac disease testing. Some people's antibodies seem to go down to normal levels within weeks while others take years; also, some people have higher test results than others (which does not seem to correlate to intestinal damage) so people with lower positives can be missed if they are not eating adequate gluten.

 

Increasing your gluten intake for a few weeks prior to testing will more likely give you a stronger positive. I don't know if two weeks would be enough for you if you are gluten-lite right now.  

 

If you are able to be retested after 6+ more weeks of eating larger amounts of gluten if the first is negative, then I would say do it soon BUT if you only get one shot at testing, I would delay testing for a month or so depending on how little gluten you were eating this spring.

 

Good luck!


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#913350 14 Mo Old Tested Over The Weekend...

Posted by on 21 April 2014 - 08:42 AM

Welcome to the board. :)

 

You asked:

Can she still be celiac with a neg test?

Yes. False negative results are more common in babies and toddlers than in adluts. To help avoid false negative, doctors will do many tests like DGP IgA and IgG, tTG IgA and IgG, EMA IgA, and sometimes AGA IgA and IgG. You would want the control test of total serum IgA run as well.  When you get her results, bring them to us and we might be able to help you with the info.

Why can everyone else in our house have gluten but her?

She was just unlucky. Those with celiac disease have a genetic component that predisposes them to autoimmune diseases, and that could be found in others in your family. If you have family wth hypothyroidism, rheumatoid arthritis, lupus or diabetes, that's the genetic component.

 

And celiac disease can develop at any time of life so even if no one else has it now, there is a chance they could develop it... or already have but are not displaying obvious symptoms. It would be a good idea to get everybody tested if she has celiac disease.

should the rest of the family be tested? 

Yes. If they are eating gluten, they should be retested every couple of years or as soon as symptoms appear.

Is there nutritionists that specialize with gluten allergies?

There actually is no such thing (that we know of) as a gluten allergy. Poeple can be allergic to wheat or barley, but not the gluten. A gluten sensitivity affects the IgA and IgG parts of the immune system. An allergy is IgE based.

 

And no, I do not know of any nutritional specialist who could help with that... To be honest, most people around here have found that a nutritionist's knowledge of celiac disease is often less than their own.

What is the next step? 

Waiting for the results. Even if the results are negative, you might want to consider a gluten-free diet for her. Give it a good 6 month trial before judging it's effectiveness OR have her eat gluten for a good 8-12 weeks and redo the tests. It sounds like she was not eating enough gluten for an accurate test result.  :(

Where is the best place to start researching and finding resources? 

Here is good. I really liked Dr Green's book. The library has a lot on celiac disease and gluten-free eating - it's quite a "trendy" disease right now.  LOL  :P  :rolleyes:

What if my husband and I are celiac also and have been eating gluten this long. What kind of damage have we done to our bodies? 

Hopefully none. Some end up with other autoimmune diseases, joint issues or nerve problems.  Long term damage is not really the norm, I think.

What kind of damage be caused if she continues to eat gluten? 

Failure to thrive, pain, bloating, headaches, nausea, diarrhea, constipation, short stature, fatigue, rashes, intestinal villi blunting, other autoimmune diseases, anemia, nutritional deficiencies, ataxia, cognitive issues, ADHD like symptoms.... Most of these are reversible with the gluten-free diet but some of us who were misdiagnosed for a few decades have symptoms that have stayed. The faster a celiac is off gluten, the better.

 

Best wishes.


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#912751 Blood Test Results Are Back - Can You Decipher?

Posted by on 15 April 2014 - 08:35 PM

Those tests look fine to me too.  You should ask your doctor for a few more tests though, or at least one - the total serum IgA.  About 5% of celiacs are deficient in IgA which will result in all IgA based tests (like AGA IgA and tTG IgA) having a false negative. It's an important control test to have done.

 

The AGA tests you had done are not the most reliable ones out there. If you want further testing, the deaminated gliadin peptides tests (DGP IgA and DGP IgG) are very good tests to add on.

 

Were you still eating gluten when those tests were done? These tests require 8-12 weeks of eating gluten prior to testing for the best accuracy.

 

Those tests are all just for celiac disease. If you think gluten is an issue for you, you could have non-celiac gluten intolerance (NCGI) which has all the same symptoms as celiac disease but without the intestinal damage. Unfortunately there are no widely accepted blood test for NCGI right now so the only way to diagnose NCGI is a positive response to the gluten-free diet (over a few months). If you think NCGI could be a possibility I would urge you to try going gluten-free for at least 3 months (6 is better) in order to see if your health improves.

 

Good luck with the doctor!  :)


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#912635 It's Been A Week I've Got Glutened Almost Everyday

Posted by on 14 April 2014 - 06:48 PM

I agree. Symptoms can last days and days from one exposure to gluten. It could be another food causing the problem, but my guess would be a one-time glutening.

 

I hope you feel better soon.


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#912623 Help Understanding Blood Results

Posted by on 14 April 2014 - 05:41 PM

You probably are right that the doctors will be reluctant to give a diagnosis on a "weak positive" with other negative tests.... It will really depend on your doctor and how up to date they are on that DGP test.

 

Even celiacs who have a fine total serum IgA level can have negative IgA based tests (tTG IgA, DGP IgA, EMA IgA) for unknown reasons, and vice versa. There are many board members around here who "failed" one celiac test only to be positive in another. IgA deficiency is more common among celiacs than in the regular population (about 5%) so requesting that test might be helpful in getting a diagnosis if she is deficient... Then again, if levels are normal, many doctors will discount the IgA based tests as not needed tests.

 

If the doctor will not diagnose her, or will do not further testing (biopsy), then you might want to jump straight to the gluten-free diet. Two of my three boys had signs of gluten intolerance when I was diagnosed. I had them tested for celiac disease but the only tests available to us were the tTG IgA and total serum IgA. The tests came back fine but I made them gluten-free anyways and they are doing much better but we'll never know if it is celiac disease or non-celiac gluten intolerance (NCGI) - I'm guessing celiac disease even though none of my kids are small or have D (neither did I).  Besides, keeping a gluten-free house seems easier to me than trying to keep food safe for the celiacs.

 

Have you and your spouse been checked for celiac disease too?


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#912604 Help Understanding Blood Results

Posted by on 14 April 2014 - 03:49 PM

i think celiac disease could be a possibility for your family.  :(  That DGP IgG test is very specific to celiac disease. If you look at this report by the World Gastroenterology Organisation (on page 12) you can see that the specificity of the DGP IgG for celiac disease is 99-100%. That means that up to 1% of the time, at the most, a positive DGP IgG is caused by something other than celiac disease (a false positive).... celiac testing doesn't get any more specific. Granted, it's not a very strong positive result, but a positive is generally a positive, especially when accompanied by symptoms. KWIM?

 

I'm guessing that the doctor will want to repeat the tests and do an endoscopic biopsy.  Don't remove gluten from their diets until all testing is done.

 

I agree that tests run on toddlers can be less reliable. If doctors won't retest, you ma want to consider removing gluten from her diet too.

 

Good luck!


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#912138 Advice Requested - Now Gluten Free, But No Diagnosis

Posted by on 10 April 2014 - 09:18 AM

Welcome to the board, Matt.

 

I agree with the others - all good advice. Testing can be helpful but not everyone can make it through the 8-12 week gluten challenge; 2-3 months of making yourself sick is a looonnnnggg time... reminds me of my pregnancies.  LOL ;)

 

Either way, you know treatment for celiac disease and for non-celiac gluten intolerance (NCGI) is going 100% gluten-free for life. There is not a lot of difference between the two besides intestinal damage, and both usually respond well to going gluten-free.  Good luck with whatever you decide to do.


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#911781 Over 25 Years Of Chasing A Diagnosis, Please Help, Elevated Ttg Iga

Posted by on 08 April 2014 - 08:10 AM

Actually, Dr. Fasano addressed the genetic component at the gluten-free Conference Saturday in Orlando and he talked about this rather factually.

He said the HLA-DQ2 and HLA-DQ8 genes are the only genes associated with celiac. They are necessary for it, but not determinate.

In other words, you may have the genes and never trigger it. But if you do not have DQ2 or DQ8, celiac is excluded.

I know there are reports of cases where people have a celiac diagnosis, and do not carry either of these genes, and I cannot account for the abnormality. I am merely reporting what he said. He said they have researched it and this is still the conclusion.

Nobody yell at me now. I am just the messenger.

I know that is the theory but..... What about those like ravenwoodglass who is a firmly diagnosed celiac who does not have those DQ2 and 8 genes, I think she has the double DQ9.... I think that's what it was. I think.

I know doctors say that it is impossible to have celiac disease without those genes, but it is quite amazing how often the impossible happens when it comes to medical issues. ;). LOL
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#911695 New- Just Got A Diagnosis

Posted by on 07 April 2014 - 03:57 PM

Welcome to the board.  :)

 

Don't forget to get the rest of the family tested as celiac disease tends to run in families. If everyone tests negative, and they continue to eat gluten, they should be retested every couple of years or as soon as symptoms appear.

 

Good luck with the endoscopy.  Make sure they take at least 6 biopsy samples.


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#911419 New To Everything, Need Insight

Posted by on 04 April 2014 - 03:08 PM

Only my Mother is being supportive of me, everyone else is denying it and saying "everyone" is claiming to be a celiac and it's probably not what it is. . . . I don't know what else it would be then honestly! 

 

 

Celiac is found in about 1% of the population but non-celiac gluten sensitivity (NCGS) is in 5-20% of the population (with 6-10% the most common stat). Really, 1 out of every 10 has an issue with gluten, so I think MORE people should be discovering that gluten is a problem - I think it's under diagnosed.

 

I would guess that 75% of us were told that it's all in our head, or it's stress related... It should almost be a celiac sign - "You've been told it's all in your head".  LOL ;)

 

Keep at it and you'll get your answer. A food and symptom journal will help you keep the "proof" straight. Many celiacs find it helpful to keep one while recovering.

 

Hang in there.


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#911418 I'm New And So Frustrated

Posted by on 04 April 2014 - 03:02 PM

The tTG IgA misses 5-25% of all celiacs when it is a lab run test. If positive, it is a 95% certainty that it was caused by celiac disease (the specificity) - the problem is that the sensitivity is 75-95%. You could still easily have celiac disease. Easily.

 

My Biocard test had such a faint line that I checked it and dismissed it. Then I came back and rechecked it after 10-15 minutes, which exceeded the normal time limit. My positive line was soooo faint that I seriously doubted it. I googled it a bunch before making a doctor's appointment. I had a lab drawn tTG IgA about 10 days later and I exceeded the normal limit by at least 10 times - that's where they stopped counting.

 

I would still get the doctor to test you. Don't even mention the Biocard test to him. Get the tTG IgA, tTG IgG, DGP IgA, DGP IgG, EMA IgA and even the older AGA IgA and AGA IgG if possible.  The more tests the better as you'll be less likely to get a false negative.  There are others who only had a positive biopsy so pursuing that, even if all blood tests are negative, might be an idea. Keep eating gluten until all testing is done - if you can stand it.

 

If everything comes back negative, then that leaves the possibility of very early, too early to detect, celiac disease or non-celiac gluten sensitivity (NCGS). NCGS has the same symptoms of celiac disease but does not have the villi atrophy. Bloating, headaches, D, ataxia, arthralgias and nutrient deficiencies can all be found in those with NCGS. It's just as nasty as celiac disease.  I personally think it is just another type of gluten sensitivity like celiac disease is. Some of us get D, some get headaches, some have it affect fertility, some get villi blunting.... but that is just my own theory. 

 

Those with NCGS need to be 100% gluten-free, just like a celiac, or the symptoms will come rushing back.  :(

 

Some doctors think the AGA tests will show NCGS but they aren't the most reliable tests out there. A positive response to the gluten-free diet is the main diagnostic tool. 

 

Hang in there. Very few of us have a black and white diagnosis. Doubt is all over. This pre-diagnosis board is supper busy for a reason - those celiac disease tests are not fool proof.... even if doctors imply that they are.


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#910389 Ema

Posted by on 26 March 2014 - 09:16 AM

The EMA IgA is rarely positive if the tTG IgA is not.  The EMA tends to become positive after the tTG IgA has damage to the villi. Then the body makes EMA and wipes out the top layer of damaged villi in a big autoimmune over reaction.... That's a bit simplified but basically how it works. That's why many labs (like mine) only run the EMA IgA AFTER a positive tTG IgA has been found. In my city to test for celiac disease, you only get a tTG IgA (and serum IgA) ordered and then if you fail that they will order the EMA.  No other options were available to me.


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#910026 How To Discuss It With Doctor

Posted by on 23 March 2014 - 09:59 PM

My kids tested negative too although gluten is a problem for most of them. I am guessing they have celiac disease but the test did not show it, so they are now gluten-free anyways... Just in case.
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