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nvsmom

Member Since 12 Jun 2012
Offline Last Active Dec 16 2014 01:49 PM
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#928159 Advice Requested - Now Gluten Free, But No Diagnosis

Posted by nvsmom on 22 August 2014 - 06:28 AM

Glad it's done.  :)  Good luck with the diet.  I hope you have a speedy recovery!


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#927613 Ttg Iga 14 - Not That High?

Posted by nvsmom on 15 August 2014 - 05:45 PM

Welcome to the board.  :)

 

You are 40% over and above the normal range... doesn't seem that weak to me.  ;)  Yes, some of us had really high tests, but many did not - that's part of the reason this forum is so popular is because the testing can be soooo confusing.  There are also those out there who had completely negative blood tests but a positive biopsy.  And then there is the reverse where you get a negative biopsy but positive labs....

 

I very rarely see someone whose lab results all scream "Celiac!"  It's definitely the minority. LOL


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#927505 Finally Saw The Gi!

Posted by nvsmom on 14 August 2014 - 07:04 PM

Good luck with those tests!  I hope they give you some very clear answers! :)


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#926832 Gluten-Free Eggs

Posted by nvsmom on 08 August 2014 - 04:56 PM

The OP asked this: "I've read that people who are super-sensitive like me can sometimes react to eggs if the hens were fed gluten. Have any of you found that there some truth to this?"

 

I answered with my personal experience.  I reacted to eggs.  Later I found that I can eat pasture fed eggs that don't get supplemental feed in the summer and I freeze these for the winter. 

 

Did I do something wrong?

 

I think the disagreement is coming from the fact that you were not reacting to gluten in an egg (because as far as tests can find, gluten is not there) but to the egg itself. The chicken that made that egg was eating grains (with gluten in it) and that resulted in an egg that did not agree with you, but it is not because you were reacting to gluten.  It is an intolerance to the egg from a grain fed chicken but not a gluten reaction.  It's just like the fact that I feel pain when I eat apples but it's not because my apple rolled on flour on the grocery conveyor belt or because wheat was in the compost.  KWIM?

 

So I guess technically someone who considers themselves super sensitive (although I often consider it super-reactive rather than super sensitive) could react to eggs from gluten fed chickens, but it's not a gluten reaction, just like some will react to apples or tomatoes or coffee - it's not a gluten reaction (although in the short term it feels identical to me).

 

I'm glad you found eggs that work for you.


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#926734 Is This Likely Celiac Disease?

Posted by nvsmom on 07 August 2014 - 11:54 AM

The tTG IgA is the most common test. It looks negative but 1 in 20 celiacs are low in IgA and that causes false negative tests.  You should see if you can get the total serum IgA done, or even look back through past labs to see if it was done. Even if you IgA levels are normal, the tTG iGA can miss up to 25% of celiacs.

 

The AGA IgG is not a great test.  If you look on page 12 of this report by the World Gastroenterology Organisation, you can see that the sensitivity of the AGA IgG can be as low as 17%!  That means it can miss (worst case scenario) up to 83% of all celiacs.  The DGP IgG (deaminated gliadin peptides) is a much better, but similar test.

 

If you can get more tests (even the endoscopic biopsy), I would do it. If not, you should consider trying the gluten-free for 6 months.  At this point you suspect celiac disease or non-celiac gluten sensitivity (NCGS), and despite the two negative tests, it could still be either one of those causing your problems.  If you are sure testing is done, go gluten-free and keep a food and symptoms journal. Symptoms can change so slowly that you barely notice so keeping a food journal can help.  There is also the added benefit that if another food is causing your problems, it may help you identify the problem.

 

Hang in there.


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#926528 Is This Likely Celiac Disease?

Posted by nvsmom on 05 August 2014 - 07:32 PM

Good luck. Glad it is good so far.
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#925861 New Member Just Venting

Posted by nvsmom on 31 July 2014 - 06:35 AM

Welcome to the board. 

 

You could always try celiac disease testing.  There is a (small) chance that you would still have high autoantibody levels after being gluten-free, especially if you have not been 100% gluten-free (meaning frequent accidents, if that applies to you). In some people the autoantibody levels can stay high for quites some time, especially the tTG IgA and tTG IgG.  The EMA IgA, DGP IgA and DGP IgG tend to go down a bit faster.

 

When googling for answers, use our discussion board as a springboard into better research. We make mistakes on here, so don't take everything we say as fact. Do more gogling but use medical websites to find the harder facts, or medical journal articles.  The cauliflower is one example, that usually is only a problem for some people with Hashimotos (which 10-15% of celiacs have) but I have Hashi's and still eat it... when I have to.  LOL

 

What I mean is that we have many members here and in such a large group you will find many issues that may or may not be related to celiac disease, but not everyone has all of those issues. Some around here have issues with strawberries, others with soy or high histamine foods.  Three is a lot a variation.

 

Dairy is a good one to look out for though. About 50% of celiacs, when they first go gluten-free, are lactose intolerant because the villi which makes the enzyme lactase, has been damaged.  Many regain the ability to consume dairy after 6 months or a year or two.

 

A food and symptom journal is a good idea when you are dealing with multiple sensitivities like you are.  It might help you see patterns a little bit better.

 

My main advce would be to hang in there.  About 70% of celiacs START to notice improvements after two weeks on the diet, and that's just a start. It can take months to years before you truly feel well.  I have been gluten-free for 2 years and I still have some issues that I am dealing with. It takes a long time. Hang in there.

 

ps.  As a favour, could you not use the small or different fonts?  I have poor eyesight, and I was tired yesterday so my jittery eyes could not focus on the fonts. Thanks  :)


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#925450 Daughter's Labs Back

Posted by nvsmom on 27 July 2014 - 06:56 AM

They have added an endoscope for her not too.  She wasn't that thrilled about that but I told her it was pretty easy so no worries :D.  She's had other surgeries and this will be a breeze compared to those.

Make sure they take 6-8 samples from various intestinal locations.  I've heard many stories about doc who only take 2 or 3 samples, or even worse, doctors who skip the biopsies because they can't "see" any damage.  :blink:

 

Best wishes to her!


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#925260 Is This Likely Celiac Disease?

Posted by nvsmom on 25 July 2014 - 06:39 AM

The tests are fairly accurate with a sensitivity of 70-100% (the amount of celiacs each test catches), and the specificty is about the same.  It is important to have a few tests run (or all) to give the disease a better chance of being caught. The tests to get are:

  • tTG IgA and tTG IgG
  • DGP IgA and DGP IgG
  • EMA IgA
  • total serum IgA
  • AGA IgA and AGA IgG (older tests)
  • endoscopic biopsy (catches about 4 in 5 celiacs)

Keep eating gluten or the tests will not be accurate.

 

The last stats I saw about Hashi's and celiac disease (that I hope I am remembering correctly) said that 10-15% of celiacs have Hashi's (my guess is higher) and that about 6% of Hashi's patients have celiac disease. If you have Hashi's you are more likely to get celiac disease than the average person.

 

I too have thyroiditis (my doctor won't call it Hashi's beause my TPO Ab is not high but my thyroid have nodules and barely works... go figure LOL) and celiac disease. I find the symptoms are very similar but overall I feel better gluten-free.  It's good you are getting tested.

 

Good luck.


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#925215 Worried About Getting An "official Diagnosis"

Posted by nvsmom on 24 July 2014 - 06:09 PM

Welcome to the board. :)

 

With three positive celiac disease tests, you really do not need a biopsy.  Some doctors get stuck on that because they think you might be the 5% of people with a weakly positive tTG IgA (tissue transglutaminase) whose test result is caused by something else.  Your result is... about 65 times above the normal range - it doesn't get much higher than that! I have no doubt that your positive tTG is caused by celiac disease.  A result that high shows that your body is attacking your intestinal lining.

 

The AGA IgA (antigliadin antibodies) is a test for gluten sensitivity.  It's quite high.  Gluten sensitivity with an attacked intestine means celiac disease.  :(

 

The Endomysial Ab (EMA IgA) is about 99+% specific to celiac disease. There is less than a 1% chance that a positive EMA IgA is caused by something other than celiac disease.  When the EMA is positive it basically means that it is trying to wipe out the top layer of your intestines because of the damage initially caused by the tTG IgA.  

 

If you had the biopsy done, it would probably show damage. That being said, the biopsy can miss up to 1 in 5 celiacs, confusing the diagnosis process for some.  If you feel comfortable going gluten-free with those (very definitive) tests, then you do not need the biopsy.  Some like to have it for that extra push to go gluten-free, and others like to have it in case they need to refer back to it later, but it won't help you get better in anymore. Go gluten-free if you are happy with your tests.... Well, not happy!  LOL Satisfied maybe?

 

If the biopsy is soon, you could still do it while gluten-free.  With tests like yours, I wouldn't be surprised if there is still damage to see a few weeks or even months down the gluten-free road - but that's just a guess.

 

BTW, I had a positive tTG IgA and EMA and skipped my biopsy. Those tests were enough for me, so I'm probably a bit biased against doing the biopsy. I think they are more useful when tests are negative but celiac disease is still suspected, and not when one already knows the patient has celiac disease.... My rant. Sorry.

 

Welcome again to the boards.  I hope you continue to feel better quickly!  :)


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#924773 Help! Positive Blood Test For Celiac, But Nothing Abnormal On Biopsy. Adv...

Posted by nvsmom on 22 July 2014 - 02:01 PM

Yep, the ladies are giving you great advice.  Keep eating gluten, if you can, if you are getting more testing done.  Once a celiac stops consuming gluten her test results will eventually fall to normal - in some that happens in a matter of weeks, for others it can take months or years.  Remember, if you want to retest after being gluten-free for a time (weeks or months), you will need to do a gluten challenge of 1-2 slices of bread per day for 8-12 weeks.... often not a pleasant experience. ;)

 

Hashimoto's hypothyroidism can elevate the tTG IgA a bit (as can crohn's, colitis, diabetes, liver disease or a serious infection) but it doesn't raise it high like celiac disease can; it will just cause a weak false negative, not 3 times the normal upper limit. Also, false positives are not common; only about 5% of positive tTG IgA tests are caused by something other than celiac disease

 

Take me for example, after decades with the disease, my tTG IgA was over 200 (my upper range was 20). After being gluten-free for a year, my tTG IgA was in the 20's. I attribute that to my Hashi's, and to the fact that I went undiagnosed for so long.  My EMA IgA was also positive when I was diagnosed but was negative after one year gluten-free, so I doubt I was getting glutened.

 

If your positive tTG Iga was caused just by Hashimoto's, I would guess your tTG IgA would have been a 16 or 17, not in the mid 40's. KWIM?

 

... Plus Hashi's tends to cause constipation, not in everyone but it is  a common symptom.


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#924524 Help! Positive Blood Test For Celiac, But Nothing Abnormal On Biopsy. Adv...

Posted by nvsmom on 20 July 2014 - 12:46 PM

 

nvsmom: I love the quote that you have there- "acceptance is the key to happiness"   That is sooo true.  :)

 

 

 I got that off of a fortune cookie a good decade ago. It is yellowed with age but still taped to my fridge.  LOL 

 

I always interpreted  it as meaning I should still try to change the things that don't work for me, but I need to accept that not everything is going to go my way - I need to make the best of what I have to work with.  ;)

 

So, is that Day 1 eating gluten-free, or day 1 of waiting to see the doctor and continuing with the gluten challenge? I'm just asking because that recipe you posted has whole wheat flour - definitely not gluten-free.  And since your celiac testing is complete, it is safe for you to go gluten-free now.

 

How about these bars instead? http://www.wikihow.c...hip-Cookie-Bars


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#924469 When To Give Up On Symptoms Improving On The gluten-free Diet?

Posted by nvsmom on 19 July 2014 - 09:23 PM

Hey, just a quick drive- by here.

On the mouth sores - try a toothpaste that is "√ No Sodium Lauryl/Laureth Sulfates". Helped my son with mouth sores. He uses Jason's or Biotene ( Colleen suggested that one and it seems to be easier to find). Might try a shampoo without that, too. Supposed to help hair loss?

 

Hmm, I never thought of that. I'll have to check my toothpaste brand later (don't want to wake up my hubby now) and see what's in it. I use a fairly basic toothpaste (I think it's Tom's) but I'll check that.

 

Someone told me about Biosil (supplements) about my 3rd month gluten-free because I had a major flare-up of some sort and was getting embarrassingly thin hair. I'm not sure if it helped, but it did't hurt.  

 

I'll look into it.  Thanks.  :)

 

 

Thanks IH for the heads up on this one!

 

Nicole -- Never, ever, ever -- did I say EVER -- give up on looking for answers.

 

I too still live with a lot of pain and still can't eat anything but fresh meat and veggies without some consequences, but I have improved and more importantly adjusted to make the most with my fucked up body. 

 

For you it is even tougher because your children are still young and require the hands on mom every day without a break -- while I love my children beyond description during my worst days it was everything I could do to not scream at them for the most minor crap.

 

BTW...my pesky thyroid was not the reason for my issues at 2-3 years gluten-free, but did have some funky test results...it is now playing happily without thyroid meds...which is fantastic, but was completely frustrating when we thought it was the cause of my continued symptoms -- rather than simply a symptom of what was still malfunctioning in my digestive system.

 

HUGE HUGS>>>>you can get better -- just may take more of that stinkin' time -- sure wish doctors could write scrips for more of that stuff!!!

 

I won't ever!  LOL ;)  Thanks, Lisa.  Your continue support and advice is always appreciated. Truly!

 

My kids' young age is almost a blessing as they keep me moving a bit more than I would otherwise. I coach them in soccer and basketball (where I get to play my sports too) so I get to get moving for fun... I just pay for it for days or weeks afterwards.  LOL  The downfall is that the house suffers on the days after sports, but I would rather use up my body in play than in house cleaning... So if you drop in, and I shuffle you into the backyard to visit on the patio rather than invite you in, you know it is because my hands or hips couldn't take the scrubbing of moving the all of the laundry.  LOL  ;)

 

So, more time. Sigh.  LOL I joke.  More time isn't bad if I can hope it will improve. It took 40 years to did into this hole so I guess it will take time to dig out.  :)

 

Thanks.  :)

 

 

It's been almost 7 years for me.  I am still learning and improving.  Keep working on it.  I found digestive enzymes revealing.  That way I could tell better what was bothering me for malabsorption reasons and what might actually contain gluten.  Monitor your diet for nutrients and adjust as necessary.  Keep that food/symptom journal and keep trying things.  I realize that I've been far too impatient in the past and haven't waited long enough to see changes before making the next change.  I'm working on that.

 

Watch out for correlation does not necessarily mean causation.  That's a tough one.  Be patient.  Don't give up hope.  I hope you make some further improvements.

 

Seven years?! Wow.  I'll keep working at it. I guess I can't expect things to change if I don't.

 

I was on digestive enzymes for a while but I found they did nothing for me - it was during the time I was on steroids so that make have masked the effect of it.  Hmm.

 

Thank you for the advice. I'll get more proactive about watching my foods while trying not to jump at shadows,  ;)

 

 

I am just about 2 years into this two.  I still continue a feeling of great transition!  I heard once that you need 1 year for recovery for every 10 years sick.  I am not sure that is true or not, but it helped me make sense of my transitional feeling this far into it.  I need to give it another year at the least.  I still have longings like to get feeling back in my limbs, but am so glad to have left brain fog and fatigue behind.  I agree not to give up looking for answers.

 

Dee

 

That gives my 2 more years of recovery time.  ;)  I can do that.  Thanks a bunch.  :)


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#924343 Help! Positive Blood Test For Celiac, But Nothing Abnormal On Biopsy. Adv...

Posted by nvsmom on 18 July 2014 - 08:15 AM

So for those of you who saw my previous post, I made sure to eat gluten before my blood test for celiac disease, which did come back positive. Therefore we moved on to the endoscopy and colonoscopy, which went smoothly. I made sure they would take enough biopsies of different places. Then the results came in, saying I'm "normal". I'm ninteen years old so maybe there isn't enough damage to show up yet? I don't know where to go from here.

Does anyone have any advice or similar experiences to share? My body feels awful- it's not in my head. Should I forget about the fact that my blood test was positive? Or that I have a zillion symptoms associated with celiac disease? I read the book Jennifer's Way and another book called Gluten Freedom to prepare for a diagnosis and so now I'm feeling sad because I just want to feel healthy but idk how.

Feel free to post here or to message me- either way. I'm very open to giving more details if that would be useful to anyone.
 

The experts call your situation latent celiac, which basically just means it is probably early celiac.  If you continue to eat gluten it is expected that your health will decline with more symptoms and you will eventually show damage to your intestines... which frustrates me to no end.  In order to get an "official" diagnosis, you need to get sicker - a terrible system. It is also maddening to me that the doctors focus so much on the intestinal damage in celiac disease. Yes, that certainly causes problems but I really doubt that my blunted villi caused my arthritis, migraines, mouth sores, and mental slip.   :rolleyes:

 

Sorry for the rant.  If you have positive auto-antibodies, and there is no sign of any other disease that could have caused it (which happens in a tiny minority of cases - <5%), then you have celiac disease.  Think of it like a pregnancy test - a positive is a positive right?  But different ladies will show at different times in their pregnancy. If you don't show until your 6th month, it doesn't make you any less pregnant.

 

The biopsy misses approximately 20% of all celiacs.  That's 1 in every 5!  You might not even have latent celiac, you could have intestinal damage and they missed it, as deperateladysaved mentioned.

 

It's not in your head.  I would guess half of all the posters around here only signed up because they were having a hard time getting a diagnosis. The rest are here for support. I honestly think that being told "it's all in your head" should be a sign of celiac disease.  ;) You are sick with celiac symptoms, you have positive celiac disease tests - you have celiac disease.  The doctors may not be willing to sign off on that yet but you'll need to make yourself sicker in order to get them on board... You probably do not want to do that at this point.

 

If people ask, tell them you had positive celiac tests so you need to eat gluten-free.  It's all true. Hopefully you'll be able to get the support you need from those around you in order to get healthy.

 

In the meantime, celiacs are often low in some nutrients that you might want to get checked: Ca, Cu, Mg, K, Fe, zinc, A, D, B12, ferritin.  Also, hypothyroidism is found in 10-15% (I believe) of celiacs so you'll want to keep an eye out for signs of that.  Going gluten-free does not assure that this will never show up either.  The best tests for thyroiditis are TSH, Free T4, free T3, TPO ab.

 

 If you decide to go gluten-free now (and I think you should) be aware that some people go through a withdrawal and often feel worse before they get better. And dairy intolerance is common so you may need to drop milk if your symptoms do not improve in a few months.

 

Best wishes in whatever you decide to do.  :)


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#924030 Ttg Iga Negative; Endomysial Iga "positive - Abnormal"

Posted by nvsmom on 16 July 2014 - 09:40 AM

Welcome to the board.  :)

 

The EMA IgA is very very specific to celiac disease. If you have a positive then it is pretty much a sure thing that you, well your wife, has celiac disease. Take a look at thois report from the World Gastroenterology Organisation (page 12) and you can see that the EMA IgA is indeed 98-100% specfic to celiac disease.  http://www.worldgast..._long_FINAL.pdf  She (most likely) has celiac disease. A negative EMA IgA titre is usually 1:10 or lower. Positive is generally 1:20, 1:40, 1:80, 1:160, etc.; it doubles every time.

 

The tTG IgA is a very similar test to the EMA IgA, but the EMA IgA tends to be positive when the damage, and disease, is more advanced.  The tTG IgA has a sensitivity of 75-95%, so I am guessing that she is one of the 5-25% of celiacs that the test misses.  It happens.

 

With a family history of celiac disease, and a positive test, I think that points to celiac disease. I know of no other causes of a positive EMA IgA. (A weak positive ttG IgA can be caused by thyroiditis, crohn's, colitis, liver disease, diabetes, and infection about 5% of the time.)

 

A false negative tTG IgA can be caused by a deficiency of IgA in about 5% of celiacs. I doubt she is low in IgA because she had a positive EMA IgA titre, but it is possible.

 

The doctor may want to do a biopsy or more tests. Don't go gluten-free yet or that will affect her results by causing false negatives.

 

Other tests to try include:

ttG IgG

DGP IgA and DGP IgG

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

total serum IgA (a control test)

endoscopic biopsy.

 

Best wishes to her!


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