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Member Since 12 Jun 2012
Offline Last Active Today, 11:50 AM

#943869 My Celiac Disease Is Causing Stressful Family Conflict

Posted by on 11 April 2015 - 07:19 PM

I'm afraid that I agree with Stephanie, it is his house.  If you were actually living there, then yes, it would be nice if he would go gluten-free, but many celiacs live (safely) in homes that are not gluten-free.  It would be nice if he was gluten free, but you are now only a visitor and I think it is too much to expect him to go gluten-free for a frequent visitor - even if it is his daughter.


It sounds like the butter is the main issue.  Perhaps you could buy some butter for them, to be used only for your dishes.  Put it in a tupperware container and hide it in the back of the fridge, or even freezer, where he won't touch it.  I'm sure that your mom could make sure pans and pots are clean before using them, and if you question the cleanliness of the utensils (my utensil drawer collects crumbs)  just wask them off before using them, and have your mom wash them before using them to prepare your food.  


If all that doesn't work, you'll have to have them over to eat at your home instead, or bring your own food when you visit. Better yet, bring gluten-free food to share.


Best wishes.

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#943626 New To All Of This - Questions

Posted by on 06 April 2015 - 06:58 PM

Welcome to the board.  :)


Your life will be much much simpler and safer if you can make the majority of your food gluten-free.  All it takes is a crumb and you could be down and out for days.  If they are willing to help you out with your new gluten-free diet at all, I would take them up on it... Gluten, well - any grains really - are not essential nutrients for people.


If you do keep a mixed house you will need to protect yourself (and here I disagree with Sweetea888 on a few things):

Do NOT share a toaster - that's not safe at all.  

Do not share butters, spreads, or any condiment that can come in contact with breads of gluten (like squeeze mustard bottles).

No more gluten/wheat flour baking in your home.  That dust can stay airborne for a long time and settle all over your food or utensils.

Be careful of crumbs in the utensil drawer.

Get your own cutting board.

Do not use cooking utensils or pans that have pits or grooves in them that may house trace gluten.

Beware of baking supplies like sugar that have previously had a flour coated spoon dipped into them.... Normal baking really won't be safe for you.

Don't share cooking water (pasta) or nibble around the gluten in food - it isn't always visible.


Label reading will usually tell you, honestly, what is in a food.  If in doubt, don't buy something.


You'll get the hang of it.  The firts sew weeks are tough but by mid summertime, you'll be a pro.  ;)

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#943389 Celiac? With My Test Results?

Posted by on 03 April 2015 - 10:40 AM

Welcome to the board.   :)


I disagree with Mamaw somewhat. I don't think it could be anything with a tTG IgA that is 4 times above the upper limit of normal.  Generally, a false positive tTG IgA (which does occur in about 5% of positive tTG IgA results) is caused by thyroiditis, type 1 diabetes, crohn's, colitis, chronic liver disease, or a serious infection (like lyme).  The other 95% of all positives, including strong positives like yours, are caused by celiac disease.  


See pages 7-12 for more info on testing:  http://www.worldgast..._long_FINAL.pdf


You do have many celiac disease symptoms.  Discounting celiac disease because you don't have D or anemia would be folly.  There are 300 symptoms of celiac disease, and no celiac will have all symptoms!  I actually shared many of your symptoms, have never had anemia (except once in my life from a separate health issue), and had chronic constipation.  Stomach, and teeth problems point to celiac disease, as does fatigue, easy bruising (from low vitamin K or platelets) and low cholesterol (my doctor always gave me the credit for that LOL).



There are more blood tests that you could get done if you doubt the celiac disease diagnosis.  This is all of them:

  • tTG IgA and tTG IgG
  • DGP IgA and DGP IgG (deaminated gliadin peptides) - good at detecting early celiac disease
  • EMA IgA (endomysial antibodies) - similar to the tTG IgA but can show more advanced dusease
  • AGA IgA and AGA IgG (anti-gliadin antibodies) - older and less reliable tests largely replaced by the DGP tests

All tests require a gluten filled diet in the 8-12 weeks prior to testing.


When you get the ednoscopy done, make sure they take at LEAST 6 samples from various locations.  The surface area of the intestines is that of a tennis court! I find it amazing that the false negative rate stays below 20% considering that the intestinal damage is often patchy.  The more samples taken, the more likely the damage will be detected.


You also have many symptoms of thyroid problems like constipation, cold extremities, and heart palpitations.  TSH tests won't catch all people with a problem.  Check TSH (should be near a 1 regardless of normal range), free T4 and free T3 (should be in the 50-75% range of your lab's normal reference range, and TPO Ab.


Best wishes.   :)

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#943357 Who To Trust (Gastro Or Immuno)

Posted by on 02 April 2015 - 03:03 PM

As far as I know, low IgA only applies to celiacs.  Some latent celiacs are called NCGS initially so I suppose it could sort of apply.


I never thought about low IgA and the biopsy... that makes some sense.  IgA is part of the immune system based in the mucosal linings, like mouths and our intestines, whereas IgG is a system wide part of our immune system - it isn't intestine specific. Hmmm.  I'm going to look into that a bit.


It's a shame celiac disease testing isn't more black and white.  Too many poeple go through an experience like your family.   :(  Hopefully you'll get a clearer answer one day.

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#943075 Struggling...

Posted by on 28 March 2015 - 11:23 AM

Be careful with Amy's Pizza.  I think I remember reading somewhere that it is made in a facility that uses wheat.  I could be wrong - I don't buy Amy's.

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#942911 Test Results Are In

Posted by on 26 March 2015 - 10:01 AM

If your rash is dermatitis herpetiformis (DH) then you may end up with false negatives.  Those with dh have a notoriously high false negative rate for the blood tests and endoscopic biopsy.  Often a biopsy beside the rash is needed.


Were you eating gluten in the 2-3 months before the test was done?

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#942519 Hormones, Hashi's And Celiac- How Does This All Work Together?

Posted by on 19 March 2015 - 05:17 PM

Oh no.  :(


Are you planning on giving it a bit longer? When I started on NDT I had D, but it eventually evened out... mostly.  


Could it be anything else?  I go through periods where I have headaches a lot.  I have no idea if it is linked to thyroid meds because it was so much worse before I went gluten-free.  Still, I have weeks where I always wake up with a headache (often in spring - like the past few weeks) which I suspect could be allergy related.  Weather (Chinook winds) will do it to me too.  Hormones too... and gluten.  Holding back a flu could do it too.


I hope it goes away soon. (hugs)  Constant headaches can wear you down. :(

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#941946 Preparing For Blood Test

Posted by on 11 March 2015 - 12:48 PM

If you can push back your blood test by a week or two, you can be more sure of an accurate test.  Chances are the it will be fine, but in some people, and in some of the tests, auto-antibodies return to normal quickly (mainly the deaminated gliadin tests).


Good luck.  :)

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#941640 Endoscopy Today

Posted by on 06 March 2015 - 04:30 PM

I hope he continues to be well if he will be eating a normal diet.  :)  Best wishes.

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#941319 Celiac Disease In Kids Detected By Growth Screenings - Live Science

Posted by on 02 March 2015 - 12:18 PM

I just hope doctors use delayed growth as a tool to halp diagnose celiac disease and not as a criterion


"In the children with celiac disease, 57 percent of the girls and 48 percent of the boys had abnormal growth two years before their diagnosis, they found. But the children weren't diagnosed until about age 6 for girls and about age 7 for boys, the researchers said."


As long as they can keep in mind that it is roughly half of celiac children who experience slowed growth - it's not everyone.  I was off the growth chart as a child - very tall.  Sometimes I wonder if that is one of the reasons the doctor never considered a celiac disease diagnosis for me when I first saw the doctors about my symptoms in elementary school.

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#941211 No Serology Needed?

Posted by on 01 March 2015 - 09:50 AM

Some frank poop talk:


Poops can can a long time to change.  In my case, I had C for my entire life but I thought it was normal.  Everything was well formed but in hindsight, it was packed way too tightly.  Take a look at the Bristol Stool Form Scale to check and see if your BM's were actually normal.  https://www.gutsense...mal_stools.html


As I said, I thought I was normal, and managed to go evry day or so, but looking at the chart, I was usually a 2 who switched to 1 or 3 on occassion.  When I was gluten-free for about 9 months, my BM's changed to a 4 or 5, with a 6 once in a while... I honestly thought I had D.  And going a couple of times a day was just odd.  My toilet paper bill quadrupled.  LOL  ;)


I babbled.  My point is that you should make sure that your BMs are actually abnormal.  Maybe it is just a new normal that you aren't used to.


You could always try testing now even though you are gluten-free.  The tTG IgA and tTG IgG are the slowest tests to get back to normal; in some it can remain elevated for weeks, months, or even a year or so after going gluten-free.   The EMA IgA, DGP IgA and DGP IgG tend to reflect a gluten-free diet faster. 


It sounds like you already have a diagnosis of celiac disease, so you don't need to put yourself through a 2-3 month gluten challenge (and sickness) to re-confirm your diagnosis.  Maybe try the tissue transglutaminase (tTG) tests now, and see it it shows anything. It may be normal, indicating that you are starting to heal, or it may still be elevated which means your recovery will take more time... As Kareng said, 6 weeks isn't very long, and some celiacs (like me) tend to feel worse before they get better.  Hang in there.


Hi Emma, I am new at this, but I am in sort of the same boat with positive biopsies. Both my PC and GI suggested HLA genetic tests, which cant rule celiac disease in but can rule it out. Its also indicated in national and international journal articles. There is no need to be on a gluten diet for these tests.


Unfortunately negative HLA (DQ2 and DQ8) tests will not rule out celiac disease, but it would make it unlikely that you could contract it.  About 97% of all celiacs have one of the two HLA types, the remaining 3% of celiacs do not.  It is possible to have celiac disease wih a negative HLA test, it is just very unusual.... We do have a couple of board members in that situation though.

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#940920 Endoscopy Today

Posted by on 24 February 2015 - 07:58 PM

Most celiacs can't be diagnosed except from the biopsy.  Things usually look good, if sometimes a bit inflamed, while they are doing the endoscopy.


Good luck to your son.  :)

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#940874 Positive Biopsies, Negative Serology - ?

Posted by on 24 February 2015 - 08:16 AM

Oops. I forgot to mention that getting nutrient levels checked is a good idea for celiacs.  We are often low in: B12, D, A, K, Mg, Ca, Cu, Fe, Zn, and ferritin.

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#940801 Is It Celiac Disease?

Posted by on 23 February 2015 - 10:02 AM

Genetic tests aren't really useful, in my opinion.  All they do is show whether you are one of the 30% of the people world wide who have the DQ2 or DQ8 genes; it doesn't tell you if you have celiac disease.  Yes, 97% of celiacs do have the DQ2 or DQ8 genes, but 3% do not. A positive genetic test just tells you if you are at greater risk of getting celiac disease, and not if you have it.


I agree with Kareng, blood tests should be done if there is any chance that the biopsy results were not positive because of celiac disease.... but it usually is celiac disease.


That doctor sounds like a dolt.  One month?  Hah!  We wish.  My autoantibodies were not even back to normal at 9 months so I KNOW my intestines were still being attacked.


I would consider going dairy free again.  Half of all celiacs can't handle dairy when they are diagnosed.  Over 2 years gluten-free, I can have small amounts of lactose, but I pay for it for a few days.


Corn and soy are problem foods for some celiacs.  Keeping a food and symptom journal may help you pinpoint a problem.  Just keep in mind that food sensitivity symptoms appear minutes to days after the food is eaten.


Thyroid check is a good idea too.  It can slow and mess with digestion too.  Having that treated, if needed, can really help.  TSH, freeT4, freeT3, and TPO Ab are the best tests.  Avoid T4, T3, total T4, and total T3 as they won't tell you as much.

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#940606 Abdominal Pain

Posted by on 18 February 2015 - 07:05 PM

You might want to get tested before going gluten-free any longer.  Celiac tests will become negative after a time on the gluten-free diet, including for all celiacs.  If you choose to test in future, after being gluten-free for some time, you will need to resume eating gluten for two to three months, and not all celiacs are willing to feel badly, for so long, just to get a diagnosis.  Get tested if you can.


As for that left side pain, your large intestine runs down the left just before it... exits the body.  Constipation or a change in bowel habits could be causing that discomfort, and that could result from a change in diet.  If you are staying gluten-free, you'll need to give your body more time to adjust.  It can take a celiac months or years before they truly start feeling better.


Best wishes in whatever you decide to do.  :)

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