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Member Since 12 Jun 2012
Offline Last Active Yesterday, 09:41 AM

#902604 More Testing For Younger Son?

Posted by nvsmom on 13 January 2014 - 08:08 PM

(hugs) It's hard when your babies aren't well.  :(


You daughter did not have the proper celiac tests done.The serum (blood) IgA and IgG tests are like control tests for different parents of the immune system in the body. The total serum IgA is often run for celiac testing because a high proportion (1/20) of celiacs are deficient in IgA, compared to the regular population, which will affect celiac tests based on IgA (like tTG IgA, DGP IgA, and EMA IgA).


IgA deals with the part of the immune system that is in the mucosal lining, and the IgG (immunoglobulin G) is more of an systemic part of the immune system.


DGP stands for deaminated gliadin peptide. Endomysial AB (antibodies) is the EMA IgA. Anti tissue transglutaminase is the tTG. The old AGA tests are anti-gliadin antibodies.


Can you get them tested with DGP IgA and DGP IgG? They really are superior tests for kids. If you can't get any more testing done, you could do a gluten-free trila of a few months. If their health improves then you have a definite answer. If they do not go gluten-free, they should be retested every couple of years until at least adulthood as celiac disease can appear at any time - which usually just means that their antibody levels are finally high enough to be detectable. Hopefully tests will improve in the future.

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#902602 Grrrr Gene Testing-Results Not What I Expected

Posted by nvsmom on 13 January 2014 - 07:51 PM

Oh gee, I know you were hoping for a more definite result.  :(  I've never heard anything about gluten sensitivity genes either.


You could be in that minority of celiacs who do not have the DQ2 or DQ8 genes. I read (in Dangerous Grains I believe) that 90 and 94% of celiacs have the DQ2 and DQ8 genes respectively. There are a couple of people around here who are in the same boat - I just can't remember who...


The gold standard biopsy after a positive blood test seems like a bit of a crap shoot to me; I'm exaggerating a bit but I don't understand why doctors love it so much. They already had a positive test showing that your body is attempting to do damage when gliadin is in your system, just because they did't find damage doen't mean your body is trying to attack itself. They can miss finding the damage or perhaps your body is withstanding the autoimmune attack better than others do. Who knows... That was part of the reason I did not have the biopsy, I didn't want an ambiguous test to affect my resolve to live gluten-free.


You've had positive blood tests, you feel better gluten-free, and your health has improved. It's celiac disease. I've never found anything else that causes a high DGP. The grey area you are in is almost black. KWIM? You are making yourself better, just stick with it and let doctors call it whatever they want.



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#902051 Ttg Still Positive After 6 Mos.

Posted by nvsmom on 08 January 2014 - 08:17 PM

The tTG tests are slow to come down.  Did they test the DGP (deaminated gliadin peptides) as that one is a better test for checking how gluten-free you are - it tends to go up and down faster. How about the EMA IgA? That one shows advanced damage and usually comes down before the tTG tests too.


The tTG IgA can also be elevated from other health problems like thyroiditis, diabetes, chronic liver disease, crohn's, colitis, and infections. When those are a factor, they will often keep the tTG elevated at a low level.


Or it could just be taking a long time to come down. i was gluten-free for over a year and my ttG was still abnormal. It finally almost touched normal when I was on some mild steroids for another health issue. It can take a long time to normalize.


I would request the DGP and EMA tests as well the next time the doctor wants to check it. That could give you a better idea of whether it is cc or just a slower recovery.


Best wishes.

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#902047 Unconfirmed Diagnosis - And Lots Of Anger

Posted by nvsmom on 08 January 2014 - 07:49 PM

Good luck with the yogurt!  :)


I'm glad you're getting more positive too. You sound like you are moving in the right direction.

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#901366 I Think Its Celiac But Negative Blood Test, Opinions Appreciated

Posted by nvsmom on 03 January 2014 - 06:11 PM

I was going to ask about thyroid testing too. You have many of the same symptoms that I had (fatigue, headaches, Stomach pain, constipation, an all over body ache, dizzy spells when I stand up (my vision sort of "goes"), cold hands and feet, just feeling "not right")and I have both hypothyroidism and celiac disease. My hypothyroidism looked just "subclinical" but after starting meds, I've discovered that it basically wasn't working much anymore. Hypothyroidism can slow your metabolism byt a third so coldness, aches and pains, headaches, stomach issues are pretty common.


If you want to double check your thyroid, ask for these test:

  • TSH - should be near a 1 despite what ever normal range your lab uses.
  • Free T4 and Free T3 - should be in the 50-76% range of your lab's normal reference range. I had a high TSH and felt hypo when mine were in the bottom of the normal range.
  • TPO Ab

The dizziness when standing is postural hypotension... Do you get the tunnel vision too? I started a low dose of fludrocortisone (Florinef) to counter that... Almost fainting (from dropped blood pressure) when you stand is the opposite of normal.


The full celic lab panel is :

  • tTG IgA and tTG IgG - most popular tests
  • DGP IgA and DGP IgG - newer test that is good at dtecting earlier celiac
  • EMA IgA - tends to be positive once the villi damage is more advanced
  • total serum IgA - a control test to ensure you make enough IgA for accurate testing, 5% of celiacs don't
  • AGA IgA and AGA IgG - older and less reliable tests

This report discusses the tests more on pages 10-12:



If you go gluten-free without full testing or a diagnosis, make sure you give the diet many months to work. I was still having improvements after 6 months, and there were many symptoms that did not improve until I was on the correct thyroid meds.


Best wishes!

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#901096 New To The Forum, Questions

Posted by nvsmom on 31 December 2013 - 01:31 PM

I had a doctor tell, me when I was a child, that I just happened to get stomach aches after every meal and learn to live with it. We listened to the doctor so I had stomach aches for another 30 years... and developed other autoimmune diseases, chronic migraines and arthralgias.... Don't listen to that nurse.  :(


I too would advise you get tested before going gluten-free. The tests won't be valid if you do it later on while gluten-free.


If you do decide to go gluten-free, recovery time really varies. Stomach aches and bloating, as well as headaches are often the first to improve (within days) but some people experience withdrawal, causing headaches, fatigue and some serious mood swings, so be aware that you could feel worse before you get better.  BMs can take months to sort out. Nutrient levels, arthralgias, and cognitive issues seem to take the longest to heal - many months up to a few years.  The gluten-free diet is anything BUT a quick fix.


Best wishes and welcome to the board.

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#901093 Wheat Flour

Posted by nvsmom on 31 December 2013 - 01:21 PM

I seemed to react slightly differently to different gluten containing products - I know there was a difference between bread and beer - but it wasn't a huge difference. To be honest, when I was diagnosed I was eating gluten most days of the week so I was living in a pretty constant state of illness and inflammation so I tended to not notice the acute symptoms flare-ups much. For example, I used to get a stomach from waffles in the morning but I thought it was the syrup and cut back on that. Anyway, I noticed stomach pain more on an empty stomach.

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#900245 Gluten Intolerance Or Celiac Disease?

Posted by nvsmom on 19 December 2013 - 06:28 PM

Someone around here said IBS stands for " I be stumped". Seems bogus to me too.


Non-celiac gluten intolerance (NCGI) can be found in 6 to (over) 10% of the population. It is more common than celiac disease, has all the same symptoms as celiac disease (except the villi damage) and can only be treated with a gluten-free diet... That how you diagnose it too as there are no accepted blood tests at this time although some think the AGA (anti-gliadin antibodies) tests may show gluten intolerance in those with NCGI as well.


Two of my three kids had symptoms like yours but they also tested negative. I am a celiac so I chose to not trust the tests and made our house gluten-free - they are doing much better now. It could be NCGI or it could be celiac disease but it really makes no difference in how one treats the diseases. It's just a label.


Good luck!

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#900008 Is Rice Dream Rice Milk Gluten Free?

Posted by nvsmom on 17 December 2013 - 02:54 PM

I switched to coconut milk myself - the real stuff in the cans. I was unsure about Rice Dream's gluten-free status so I dropped it just in case.

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#899055 Testing - Is It Worth It? (Newbie Here)

Posted by nvsmom on 10 December 2013 - 12:00 PM

I agree. The main benefits of testing are being able to stick to the diet better, and sometimes having accommodations made for you at places like school.  I would think that you would tell doctors that you have celiac disease and they would take that into account for future treatment, like during a pg.


On the other hand, an endoscopic biopsy requires a gluten challenge of only 2-4 weeks; if you can handle that, it might be a good test to pursue - and get the blood work done as well... You never know. 


You could always try the testing right now. It took my tTG IgA levels almost a year and a half to get down to normal levels. You might be slow like me. Most take a few weeks to months.


You might want to check your nutrient levels. Ca, D, B12, Fe, K, A, Cu, and zinc are often low in celiacs. Thyroiditis and diabetes are common in celiacs too so you'll want to keep an eye on that.

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#898101 Dealing With The Emotional Aspects Of Ai Disease

Posted by nvsmom on 03 December 2013 - 02:41 PM

Don't forget the free T3 too -that's the active hormone in the body. That one you want in the 50-75% range of your lab's normal reference range.


I'll join the party too.  I get mad at the unfairness sometimes too.  I get mad that I have health issues and I get really mad that no doctor caught them - it was me and they "confirmed it" decades after my first symptoms started... lets call that birth.  LOL When other stuff goes wrong in life it makes looking after health that much harder. Hubby lost his job, I'm hosting/hosted guests and parties (for kids), and I am waiting to see if I have a pituitary adenoma... it's making it harder to make healthy choices BUT after a year and a half gluten-free, I can honestly say that finding gluten-free foods is not a problem and causes me no real heartache - I actually had to fake disappointment to an aunt this weekend when I couldn't eat her birthday cake so I wouldn't hurt her feelings!  LOL


My favorite fortune cookie ever said " Acceptance is the key to happiness."  I LOVE that. My life is what it is. I can work to change what can be changed but some things have to be accepted and moved past or it will affect my quality of life; I only get one life (I think) so I better enjoy it while I can.

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#897383 Borderline Celiac?

Posted by nvsmom on 26 November 2013 - 08:49 PM

Welcome to the board.  :)


There really is no borderline celiac - you either have it or you don't. That "borderline" talk probably refers to the degree of damage found. Some celiacs have a great deal of damage and others just have patchy. It is thought by some that early celiac (in the first few years) often results in patchier and less severe damage and the complete villus atrophy occurs in cases that have gone undiagnosed longer.  


I mostly agree with that but want to stress that not all celiacs experience the disease in the same way. Some celiacs only have one type of positive autoantibodies, some have all positive, some have all negative yet have a positive endoscopic biopsy, and yet others have a negative biopsy with positive blood tests.... There's a lot of variation.


If you are having the endoscopic biopsy, make sure you continue to eat gluten until the test is done or it will most likely give a negative result.  You might want to consider trying the blood tests again as autoantibody levels can fluctuate and might register on the blood test now. The tests to request are:

tTG IgA and tTG IgG



total serum IgA (control test)

AGA IgA and AGA IgG (and older and less reliable tets)


Good luck with the tests and with going gluten-free afterwards.  I hope you feel much better soon.

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#896984 Should I Try Eating Gluten Again?

Posted by nvsmom on 23 November 2013 - 05:30 PM

I would give it another couple of months. It is usually reccommended that you give the gluten-free diet a  minimum of 3 months, 6 is much better. I personally took a downturn after 3 months gluten-free so I usually suggest 6 months gluten-free before judging the diet's effectiveness.


Also, because you have already been gluten-free for a month, and you said that it has randomly gone away for 2-4 weeks at a time in the past, so why not stay gluten-free and see if it stays gone rather than consuming gluten again and waiting for it to come back. You know it goes way randomly comes and goes while consuming gluten. So far your cough has gone while eating gluten-free so I would stay gluten-free and see what happens in the next few weeks.


Make a gluten-free pie for yourself for thanksgiving. My lazy pumpkin pie uses crumbled gluten-free gingersnaps or gingerbread with melted butter as a crust - it's as good as any normal pie. Make yourself a small amount of gluten-free stuffing and you aregood to go.  :)

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#896053 Lab Results For 15Yo Daughter, Question

Posted by nvsmom on 15 November 2013 - 01:31 PM

I don't (personally) believe that one becomes more sensitive to gluten - either you are sensitive or you not. I do believe that symptoms can become more obvious and uncomfortable once you actually become healthy. When you eat a food you are sensitive to, a body will "mal-adapt" so you can handle constantly being ill or in pain. The body makes illness the new normal so reacting to a hot dog bun isn't as obvious of a hit to your health because you are already on a much lower level of health... does that make sense?


I don't think there are sensitivity levels to gluten either, just a wide variety of symptoms that vary in severity.  :(


I do hope she comes around.  Good luck to you!

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#895633 Gastro Said I 'probably' Dont Have Celiac Desease? Please Read

Posted by nvsmom on 12 November 2013 - 08:21 PM

I hate to say it, but I think your doctor is wrong... Without a doubt. I believe that you do have celiac disease. The tTG IgA test is about 95% specific to celiac disease which means that 95% of the time a positive test will be caused by celiac disease.... That's pretty accurate and reliable. The EMA IgA is even more specific to celiac disease; a positive EMA IgA indicates celiac disease 98-100% of the time. If you combine those two results, there is literally no doubt that you have celiac disease.

Those are the tests I had done too and my doctor declared me a celiac without even bothering with a biopsy.

Besides, those two tests do not test for gluten sensitivity, they test for damage, or attempted damage, being done to the small intestine's villi, and that is usually from a celiac response to gluten. You doctor sounds like he is out of date with current celiac info. :(

This is where I got my stats from (pages 10-12):

As for your question, a colonoscopy does not check for signs of celiac disease, but it could show crohn's. The endoscopic biopsies test for celiac disease, but to do a good job a doctor needs to take six or more samples and not one! The doctor missed the damage - I think they made a mistake.

I hope you are gluten-free in spite of what the doctor has said. A new doctor might be in order. :(. Best wishes.
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