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

Posts I've Made

In Topic: Waiting For My Test Results

Yesterday, 08:34 PM

Autoimmune diseases like RA, lupus, diabetes (T1), hashimotos among others, are often found in the families of celiacs, or in celiacs too (many of us have a few issues).  Having AI diseases in the family is a good reason to keep an eye on celiac symptoms. I have family members with celiac disease, I also have some with thyroid problems (seems like half of them) and RA too. I have celiac disease, hashi's, and an autoimmune blood disease (ITP) which caused some serious anemia when I was in my late teens(it's not common).


Low cholesterol is common here too. If you search the forum for it you'll probably find a few stories.  Mine is low to off the normal range low... Low enough that one doctor has tried to raise it, my old doctor just congratulated me for eating right... yet I was an undiagnosed celiac eating gluten at the time.  LOL


The average diet has 10-40g of gluten per day in it.  A slice of bread is just under 5g and a (small) serving of pasta is over 6g.  A gluten challenge needs about 5-10g of gluten per day, which is technically less than the average person.  If you ate enough cookies, you should have been fine for the tests.  ;)

In Topic: ? Misdiagnosed Celiac?

Yesterday, 07:35 AM

I agree with the others.  Many celiacs are symptom free and don't react obviously to gluten but that does not mean that it isn't damaging your body in ways that will be evident in the future.  You need to make sure you are completely gluten-free and not just mostly gluten-free. Ingesting gluten once or twice a month is enough to stop your healing and keep you sick.  :(  And if you had more than one positive celiac test, it's a sure thing that you have celiac disease - the doctors just missed the damaged areas during the endoscopy..


Healing can take a long time, and not everything gets better on a gluten-free diet. I have been gluten-free for over two years but I am not 100%. There are some things that appear to be permanent damage from years of eating gluten while undiagnosed, and then some symptoms, even though they are often symptoms of celiac disease, are caused by other health issues.  I also have thyroid problems which is strongly linked to celiac disease.  Perhaps google Hashimoto's (hypothyroidism) and Grave's (hyperthyroidism) and see if any of those symptoms apply to you as your ongoing issues could be caused by something other than celiac disease - thyroid issues being a big one. :(


Have you had your nutrient levels checked?  Low levels can cause health issues and sometimes they need help in improving. Celiacs are often low in Fe, Ca, Cu, Mg, K, A, D, B12, ferritin, zinc; anemia is quite common if these are low.


Best wishes and welcome to the board.  I hope you are feeling better soon.

In Topic: Waiting For My Test Results

Yesterday, 07:23 AM

Welcome to the board.


It's good that you are getting testing. Better safe than sorry since you do have symptoms of the disease.  You symptoms are pretty mild but that happens in some, and the symptoms often get worse as the disease progresses. When I was in my mid 20's, I was running 3-15 miles per day, lifting weights, and working full time, and my symptoms were some stomach aches, constipation, some headaches, and occasionally my first bouts with arthritis.  I had normal blood and nutrient levels.  15 years later, my blood and nutrient levels were still fine, I had migraines and stomach aches, but the worst is that my arthritis progressed to the point were I can't run or lift with any consistency anymore... I wish I had been tested and treated decades earlier, so I'm glad you are getting checked.


Make sure they run the full celiac panel.  These tests are not 100% sensitive for celiac disease, and miss about 20% of celiacs. This is the panel:

tTG IgA and tTG IgG


EMA IgA - tends to detect more advanced damage

total serum IgA - a control test

AGA IgA and AGA IgG - older and less reliable tests


Make sure you continue to eat gluten (1-2 slices of bread per day or the equivalent for 8-12 weeks prior to testing) if testing is not complete.  


Let us know your test results. Good luck!

In Topic: New Here

11 July 2014 - 07:49 PM

....or just checking with an employee at customer service to see if there's anything like that in your grocery store.

That is such good and simple advice! I wish I had thought of it!!  I need a head smacking smiley here...

In Topic: Should I Get Tested?

11 July 2014 - 07:47 PM

Welcome to the board.


IBS is just a group of symptoms and not really a diagnosis of anything (in my opinion).  There are many around here who had IBS symptoms which did resolve with the gluten-free diet.  Her symptoms are pretty common celiac and non-celiac gluten intolerance (NCGI)  symptoms, and if she is not 100% gluten-free, those symptoms will continue to reappear.


Because she is gluten-free already, teating for celiac disease could be difficult. Celiac tests are not accurate if you are gluten-free so she'll need to under go a gluten challenge of 1-2 slices of bread per day (or equivalent) in the 8-12 weeks prior to the blood tests.  When a celiac is gluten-free, those tests will eventually return to normal but in order to be diagnosed, she will unfortunately have to make herself sick for a few months. 


These are the blood tests to ask for. The more she gets done, the more accurate it will be.

  • tTG IgA and tTG IgG (anti-tissue transglutaminase) - the most common tests
  • DGP IgG and DGP IgA (deaminated gliadin peptide) - a newer test good for detecting early celiac disease
  • EMA IgA (anti-endomysial antibodies) - tends to detect more advanced damage, very similar to the tTG IgA
  • total serum IgA - control test
  • AGA IgA and AGA IgG (anti-gliadin antibodies) - older and less reliable tests

The endoscopic biopsy only requires a 2-4 week gluten challenge. Make sure at least 6 samples are taken.


Keep in mind that if her tests are positive, she'll be back to a gluten-free diet again, she'll just need to be more careful about it.  She can't make slip-ups.


If her test is negative, but she has issues with gluten, then she will still need to stay gluten-free without slip-ups... In the end I think it will come down to tightening up her diet some (if gluten is an issue for her).


Good luck with whatever she decides to do. Let us know how it goes.  :)