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nvsmom last won the day on May 5 2019

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  1. Ditto.  If your disease is not too advanced, the EMA IgA will appear negative for many people.  The test is very similar to the tTG IgA, of which you were over double the normal limit.


    The reticulin tests are quite old and rarely used anymore because the newer tests of tTG  are more reliable.  The (anti-) gliadin antobodies tests (AGA IgA and AGA IgG) are usually the oldest tests out there and they have been largely phased out because the deaminated gliadin peptides tests (DGP IGA and DGP IgG) are so much more sensitive and specific to celiac disease; yours caught you though!


    That is an overwhelmingly positive celiac disease panel.  Many celiacs will only get one or two positive tests but you are positive in four... I'm afraid a celiac disease diagnosis is a pretty sure thing.  :(


    You should get your naturopath to refer you to a GI specialist, or go see your GP and have him do it.  You'll want that diagnosis to go on your records if you ever need food accommodations (like in a hospital or nursing home).  The Gastro may want to do the endoscopy which requires you are eating gluten in the month prior to testing so consider that before going gluten-free.


    Welcome to the board and best wishes.  :)

  2. That's great!  :)  I hope they stay negative forever, chances are good that they will.


    Is your Gastro appointment coming up soon?  You could probably switch to gluten-light if it will be a while. A 1/2 slice of bread per day will probably be enough to keep your autoimmune reaction humming along without making you feel even worse.  If the gastro appointment is way in the future, you could go gluten-free and then resume eating gluten (for 4 weeks) if he wants to do the endoscopy (although with 4 positives I think it would be testing overkill ;)).

  3. You are most likely a celiac then.  The DGP IgA is pretty specific to celiac disease; around 95% of people with a positive test have celiac disease.  The fact that you were eating gluten-light and made a positive result - that's pretty meaningful.   :(


    I would try to drag your gluten challenge out to at LEAST 6 weeks if possible.  If you make it too short you run the risk of getting false negative results, and then the doctors might discount that positive test (a mistake 99% of the time).


    This report has some good info on the tests: http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf


    Enjoy a guiness and a donut for me... not together though.  ;)

  4. If you wash the dishes they should be fine.  Be wary of pitted and scratched wooden surfaces or teflon though.


    For family events, it depends on who is hosting. I was at a wedding where my family and a cousin were gluten-free and ther were able to make us a gluten-free plate before everyone else used the buffet.  We didn't get to eat everything but it was a nice meal.


    A few weeks ago was my godfather's memorial. My aunt and family planned sandwiches and trays of veggies, fruit and goodies. I told her I would bring gluten-free foods so I brought enough sandwiches for at least 30 and treats for more than that.  In a situation like that,I don't want others to have to fuss to accommodate me and my family.  As it was, the butter and sauces I brought were promptly contaminated despite my labeling, but I didn't really expect it to stay safe with a bunch of farming seniors around. ;)


    At a family gathering, I figure it's all fair game and I rearrange all dishes so I can keep my stuff safe and separate.  I do tend to end up bringing twice as much as everyone else though, so I can feed me and the others.  KWIM?


    If I meet others when going out, I eat ahead and just have drinks. it's safer.


    After a few months gluten-free, you'll find your comfort levels.

  5. If you have been eating a normal diet up until now, then you probably do not even need to do that.  Most people eat the equivalent of 1-2 slices of bread (in the form of noodles, muffins, crackers, gravy, breaded meats, baked desserts) per day.


    If you have been gluten-free, it is better to eat gluten for 8-12 weeks, with 12 weeks being better.  Some tests, like the tTG IgA, tTG IgG, and EMA IgA will be slower to increase, and to decrease.  After going gluten-free, it can take some celiacs a good year for their tTG tests to get back to normal.  The DGP tests (deaminated gliadin peptides) will change a bit faster, but possibly not within 3 weeks... probably not.


    If you were having the endoscopic biopsy done, 3 weeks would be about right.


    Good luck!

  6. I agree.  The best way to get a celiac disease diagnosis is to run as many tests as possible because ALL celiac disease tests can miss celiacs.  The biopsy can miss up to 20% of celiacs, and the blood tests can miss up to 1 in 4 to over half (in the old anti-gliadin antibody tests).  Get the tTG IgA, tTG IgG, DGP IgA, DGP IgG, EMA IgA, total serum IgA, and at least 6 biopsies taken when the endoscopic biopsy is done.


    It sounds like you should maybe do the same... :(


    Good luck.

  7. Symptoms in a toddler may include changes stools (D or C), slowed growth and development, weight loss or slowing, fatigue and affected sleep, crankiness, stomach upset, rashes, headaches.... symptoms will mostly come back to a bad mood since they won't be able to say what is wrong.  Expect more tears if symptoms present themselves.


    Symptoms can present minutes (about 15-30) to 3 days after exposure to gluten.


    Be aware that many celiacs do not present obvious symptoms.  Anemia, opsteoporosis (slowed bone development), vitamin deficiencies, slowed cognitive development, etc. may not be obvious... I would not be able to see it in a toddler.  The bottom line is that it may be affecting him but he isn't showing it, or the symptoms are not extreme.


    If you are positive, get him tested or keep him gluten-free.  He'll be at high risk of developing celiac disease himself.  If he tests negative, retest him every two years or as soon as symptoms develop.  It's a genetic disease that he could get at any time over his entire life.


    He can stay gluten-free even without a diagnosis.  Gluten is not a needed protein for humans.

  8. The loose stools may be hormone related but that doesn't mean it isn't celiac disease linked either.


    Right before menstration, the body clears out the large intestine - it does the same thing in early labor.  Before I was diagnosed I looked forward to that because it was the only time I felt cleared out; I had chronic constipation so that time of the months was loose to normal and got things moving.


    Now, I have normal stools so for a day or two each month, I'm in the bathroom a few times a day with looser stools.  It's just the hormones clearing you out.


    That being said, loose stools every day isn't normal so you might as well get that checked. 


    You doctor is incorrect to say that celiac disease is hard to diagnose.  If they actually run the right tests, it isn't usually that difficult.

    Ask for:

    tTG IgA and tTG IgG

    DGP IgA and DGP IgG (deaminated gliadin peptides)

    EMA IgA

    total serum IgA - control test

    AGA IgA and AGA IgG (antigliadin antibodies) - older and less reliable tests replaced by the DGP tests


    Make sure you are eating gluten in the 2-3 months before testing.


    You also might want to check your thyroid. Hyperthyroidism can cause loose stools.  Other food sensitivities can do it too.


    Best wishes and welcome to the board.  :)

  9. Worrying about the change is harder than doing it - I think.  Going gluten-free isn't a huge lifestyle change unless you eat out a lot.  That's where it changes for most people.  It is difficult to get used to cooking most nights, or making extra so you can have leftovers, than it is to get used to eating a bit less bread or baked goods... There are gluten-free substitutes out there for bread and such, although they are not fortified with vitamins like most breads are, and their fibre content is usually lower.


    You'll get it.  The first couple of months are definitely work, but I predict you'll be pretty comfortable with the diet by time the fall rolls around.  :)

  10. I agree. With 4/4 tests positive, there can be no doubt that you have celiac disease.  Some doctors always want to do the scope as a standard part of their diagnosis, but I would discuss it with the doctor why that would be needed.  


    I actually skipped my scope because I had very positive tTG IgA and EMA IgA.  The EMA IgA (endomysial antibodies) is 98-100% specific to celiac disease, so knowing that I felt there was no need for a biopsy and my doctor agreed.  The EMA IgA is the one test you did not have done, but with 4 positives, one being the DGP IgG which is very specific to celiac disease too, I think you can be pretty confident in your celiac disease diagnosis.


    Those tests look good for your kids.  Again, the EMA IgA is missing, but it tends to indicate more advanced disease so it is not always positive in young children.  Be aware that if they test negative now, you still need to retest them every two years if they continue to eat any gluten.  Celiac can develop at any age so they'll need to be aware of it for their entire lives.


    Good luck with the doctors, and welcome to the board.  :)

  11. Probably.  You probably have some intestinal damage to your villi which is usually caused by celiac disease.  The biopsy damage is rated on a Marsh scale where 3 is definitely celiac disease and 2 may be celiac disease.  A 1 shows some abnormalities but they won't call that celiac disease (yet) .  If they ordered blood tests after seeing your biopsy results, my guess is that you scored a 2 or 3.


    This report has more info on the tests: http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf


    If you do have celiac disease, get your son tested.  It's a genetic disease so he has a much greater risk of developing it than most people do.


    Let us know what the doctors say.  And welcome to the board.  :)

  12. That sounds pretty good to me, but I am not the most knowledgeable person around here about this.


    I did see this and it seems to support your doctor's approach: http://www.medscape.com/viewarticle/755402


    More biopsies taken increase the likelihood of catching the disease, but not many doctors will do more than 6.  I think 8 is the high end of what we usually hear about.  Most doctors do 6 or less; sadly 4 or less isn't uncommon either.