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Member Since 12 Jun 2012
Offline Last Active Today, 02:12 PM

#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 You doctor sounds like he is out of date with current celiac info.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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#895254 Taking 15Yo For Tests Tomorrow!

Posted by nvsmom on 08 November 2013 - 01:30 PM

Some think that adrenals get worn out after dealing with illness/autoimmune issues for a long while. Adrenal fatigue is not a completely accepted idea but I think it has merit myself.


I hope she gets clear results.  :)

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#895215 New Here And Need Help! 8-Year-Old Daughter So Many Symptoms Even Though...

Posted by nvsmom on 08 November 2013 - 09:02 AM

Oh dear.  :( The doctors told her to continue eating gluten in spite of multiple positive tests just because they didn't happen to biopsy the areas that were damaged.  :angry: Did they say why they did not think her positive results were caused by celiac disease? Most celiac tests are pretty specific to celiac disease. The tTG IgA is one tests that has a "high" false positive rate of between 1 and 9% of the (weak) positive results and those false positives are almost always caused by thyroiditis, diabetes, crohn's, colitis, liver disease or a serious infection... doctors should know this!  (((hugs)) to you.


If you have her past tests, we might be able to help you interpret them. Same goes for the biopsy results.


I would let her have her last Oreos or Kraft Dinner, and then make her gluten-free as soon as the doctor is done with testing (or you are). That is plenty of evidence for you to treat your daughter with the gluten-free diet even if the doctors don't get on board. My kids tested negative in blood tests but because I'm a celiac, and they have symptoms, I went with the assumption that they are celiacs too - I'm glad I did as they are much better.


You should probably get the rest of the family tested too as celiac disease runs in families.


Symptoms can take weeks to months to improve; sometimes it takes years. As Cyclinglady said, if her thyroid is under-functioning, that will cause worse constipation and she may need hormones to treat that issue. If she gets tested for thyroid function, request a TSH (should be near a 1 regardless of most labs' ranges), free T4 and free T3 (should be in the 50-75% range of the lab's normal reference range), and TPO Ab.


Best wishes.  I hope she feels better soon.  (hug)

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#895151 Testing Question After Gf

Posted by nvsmom on 07 November 2013 - 06:06 PM

The longer you are gluten-free, the higher the chances that any celiac test will yield a (false) negative result.  It IS possible to still have positive autoantibodies after 5 months gluten-free but I would say it's more likely that they will be negative. I personally still had a weak positive tTG IgA result after about 15 months gluten-free (it had fallen dramatically), but I know that my EMA IgA test became negative sometime before I was a year gluten-free.


After being gluten-free for 5 months you will need to complete a gluten challenge of about 2 slices of wheat bread per day for approximately 2 months before you will have accurate results.  :( It might be simpler to stay gluten-free.


And I agree, with a history of Hashi's, it's probably celiac disease.


Welcome to the board.  :)

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#894890 Feeling So Horrible

Posted by nvsmom on 05 November 2013 - 08:26 PM

That sounds like it could be withdrawal; about a third of celiacs go through it.  :( When I went through it I as so exhausted no matter how much I slept, I was incredibly cranky and irritable, and I had a migraine that lasted for days. Overall, I was out of withdrawal after about two and a half weeks.


Give it time to pass, but as karen suggested, keep an eye out for other causes too - it could be a coincidence.


Best wishes. I hope you feel well soon.

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#894687 Immune System And Energy Levels In The First Few Weeks gluten-free

Posted by nvsmom on 04 November 2013 - 07:11 PM

You probably are going through a bit of withdrawal and then have the cold on top of it... unlucky you!  :( Withdrawal usually hits within a few days and can last up to a few weeks. If it is affecting you, hopefully it will be over soon.


When colds swing back for a repeat, it usually (for me) means a secondary infection like in the sinuses, ear, or chest, and I often end up on antibiotics. Sometimes it's viral and you just have to wait it out.


It's also helpful to remind yourself that you've been sick a long time and it will take some time for your body to stop attacking itself and start healing. Your tTG IgA is high; if you are anything like me, it will take months to a year for your autoantibody levels to fall back down to normal... and then you really start healing.  :)


Best wishes. Hope you feel well soon.

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#894187 Boyfriend's Sister Is A Pastry Chef - Misinformed About Celiac?

Posted by nvsmom on 01 November 2013 - 06:51 PM

Yikes! :huh:  If you can gently educate her about celiac disease, I am sure hundreds of future customers will be grateful!


Seriously though, I would try to correct her.... gently.  Good luck!

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#893469 Anemia, Gi Symptoms, Negative Antibodies

Posted by nvsmom on 26 October 2013 - 07:53 AM

Welcome to the board, gfreecookies.  :)


Celiac tests are not fool proof, not by a long shot. They regularly miss celiacs. Yes, they usually do catch most cases but people slip through the cracks all of the time. The tTG IgA, the most common celiac disease test given misses 5-25% of all celiacs. The other tests are similar which is why it's a good idea for doctors to rum multiple tests when looking for celiac disease. This report discusses testing from pages 10-12: http://www.worldgast..._long_FINAL.pdf


Did you have a few tests run? Did they run the total serum IgA (control test) while they were at it? I agree that it's a good idea to get a record of every test run. The DQA tests are just genetic tests which tell whether you are in the population that is more likely to get celiac; there are board members who had negative genetic tests yet they have tested positive for celiac disease. You don't need those genes to develop it.


Did they do at least 6 biopsies when they did your endoscopy? Celiac damage usually is not visible to the ye during the procedure. If you have your report, feel free to post it; there are some very experienced people around here who can help you interpret it.


There is also the possibility of non-celiac gluten intolerance (NCGI). Those with NCGI can have every symptom a celiac can have except the damaged villi (which is really just one symptom). Nutrient deficiencies , reflux, and other symptoms can all be linked to NCGI.


Unfortunately there is no test for NCGI right now except a positive response to the gluten-free diet - which you've had. You haven't been on the diet for very long though. You may need to give it more time for your body to recover.  Plus, you will slow down your recovery by not being gluten-free. Eating 98% gluten-free is not gluten-free, that is gluten-lite.  And while it is good work, and I'm sure it is helping some, you'll need to go 100% gluten-free in order to reap the full benefits.... Think of it like a peanut allegery - only 100% peanut avoidance will keep that person safe.  KWIM?


If after 6 months, your reflux and stomach pain isn't noticeably reduced, I would look into other causes. There are many possible causes to your symptoms, so it probably would be a good idea to look into other disorders.


Best wishes!

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#892791 One Study Said 60% Of Celiacs Are Not Healing Just With Diet.

Posted by nvsmom on 20 October 2013 - 03:35 PM

I agree with Adalaide and Irish, not much there to back that up.  That being said, I wouldn't be surprised if about half of celiacs continue to have some problems after going gluten-free. If you've been damaging yourself with gluten for years, not everything will be repairable. I personally have made HUGE gains in my health since going gluten-free over a year ago but I still have lingering health issues... I just can't be sure if it is still from celiac or if it is some other autoimmune health problem (possibly kicked off by celiac disease) that is causing it all.  KWIM?


If I regain my full health, I'll be pleasantly surprised. I am pretty pleased with the improvements so far.  :)

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#892553 Possible Ingestion Of Gluten?

Posted by nvsmom on 18 October 2013 - 07:09 PM

Good luck!  :) I hope you find the cause and it is just a "glutening". If you can't find a cause, stay gluten-free and give it time - I still had symptoms improving at one year gluten-free.

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#892364 Some Research To Consider When In The Diagnosing Prosess

Posted by nvsmom on 17 October 2013 - 07:22 AM

I completely agree! I just wish doctors would quit with their sweeping statements of "fact" in the meantime. If only doctors would say, "what we think we know right now is..." instead of saying something doesn't exist just because they haven't personally read about it yet.   :rolleyes: The stuff I've had doctors tell me as a fact is quite dsturbing; if I hadn't educated myself, I would never be getting well.  

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#892357 Possible Ingestion Of Gluten?

Posted by nvsmom on 17 October 2013 - 07:12 AM

It could be either the celiac lingering or a glutening. Like Colleen said, I would check all of you labels just to be sure you are eating gluten.


Arthritis was one of my celaic symptoms and I had a pretty severe backslide after I had been gluten-free for a couple of months. Once again, my hair thinned out, I felt flu-ish, and I could barely use scissors or get my arms above my head. I was pretty convinced that I had other problems like lupus or MCTD but the docs said no, it was the celiac. It passed after a few months and I have been mostly arthritis free for about 10 months - a long time for me so I'm hopeful it was caused by celiac disease and that was the last bout of pain for me.


So, my point is that it could be celiac disease still, but check labels and look into other causes (like hypothyroidism) in the meantime.  Good luck!

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#891719 Why Do I Have Symptoms From Activity?

Posted by nvsmom on 12 October 2013 - 04:32 PM

I tend to have autoimmune flare-ups when I get worn out or stressed. Many of the symptoms are celiac symptoms, some I attribute to my thyroid, and others just feel fluish and yucky. I've been gluten-free for almost a year and a half yet I still get issues even when not glutened...


I agree, Rome wasn't built in a day... Or rebuilt in our case.  ;) Hang in there.

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#891718 Confused: Told I Have False Positive, No Celiac, And Severe Chronic Hayfever.

Posted by nvsmom on 12 October 2013 - 04:28 PM

It is extremely rae to have a false positive. Extremely... My guess would be that you do have celiac disease but you also have very bad hay fever too... Lucky you.  :(


Celiac testing tests for antibodies that will wipe out your intestines or mucosal tissue as an over reaction to a gliadin (gluten) intolerance. The tests are tisuue transglutaminase, deaminated gliadin peptides, endomysial antiabodies and sometimes the older anti-gliadin antibodies tests. The reactions usually involve immunoglobulin A or G (IgA, IgG), unlike allergies which involves IgE. It is a very separate set of reactions.


Occassionally some celiac tests (like tTG IgA) can indicate other hea;lth problems like diabetes, liver disease, crohn's, colitis or thyroiditis, but those cases usually involve a blood test that was barely positive and only occurs about 5% of the time a positive test happens. I have never heard of a positive celiac test being caused by an allergy... I'm not saying it couldn't happen but I've never noticed anything about that.


A negative endoscopy with positive blood tests, or vice versa, does happen. There are a few board members that has happened to around here. It can happen. Don't discount celiac yet; it is possible that your allergy problems are masking any improvement going gluten-free provided.


Good luck. I hope you feel well soon.

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