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Member Since 12 Jun 2012
Offline Last Active Today, 07:13 AM

#904547 Am I Likely To Be Dx-Ed? Please Help!

Posted by nvsmom on 30 January 2014 - 08:40 PM

It is still not clear to me what is the level of gravity of the situation when a celiac who is generally on a gluten-free diet gets contaminated accidentally. What about for a NCGS ?


For both disorders, being glutened sets your health back a few weeks to a month - generally. Obvious symptoms may only last a few days (stomach ache or headache) but others can last a while (arthritis, hair loss). There is also the possibility of increased inflammation which can contribute to other health problems.


Once you have been eating gluten-free for a few months, it really isn't that hard. It's similar to people who have food allergies like nuts, eggs, or milk; you just get used to reading labels - it could be much worse. I personally find the only time my celiac disease is a hassle is when I am eating out and I can't bring my own food.


It isn't that hard. I haven't been glutened in about a year.  :)

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#904208 Could This Have Something To Do With Gluten?

Posted by nvsmom on 28 January 2014 - 12:10 PM

Welcome to the board.


Yes, it could be due to a gluten intolerance. Because your symptoms changed when you stopped eating gluten, that also points towards gluten being a problem.


People who have problem with gluten are either celiacs or they have (NCGI) non-celiac gluten intolerance, which is much more common and does not damage the intestinal villi. There are no widely accepted blood tests for diagnosing NCGI; if you have a positive response to the gluten-free diet after a few months, then it indicates NCGI. Celiac disease will have the same symptoms and positive response to the gluten-free diet, but there are blood tests available to test for it as long as the patient is still consuming gluten. Those tests are:

  • tTG IgA and tTG IgG (tissue transglutiminase)
  • DGP IgA and DGP IgG (deaminated gliadin peptides)
  • EMA IgA (endomysial)
  • total serum IgA - a control test
  • AGA IgA and AGA IgG (anti-gliadin antibodies) - this is an older and less reliable test but some think it can show NCGI as well a celiac disease.

For all tests to be accurate, the patient should be eating gluten (about 2 pieces of bread per day) in the two months prior to blood tests being done. Do not go gluten free if you want to be tested.


The endoscopic biopsy requires only 2-4 weeks of glute for an accurate test.


Your symptoms also match hypothyroidism (feeling cold and upset stomach). Look at Hashimoto's and see if that fits you too. The tests for that are TSH (should be near a 1), free T4 and free T3 (should be in the 50-75%range of your lab's normal reference range), and TPO Ab.


Getting dizzy when you stand is postural hypotension; it means your blood pressure drops when you stand up. That can have something to do with your adrenals, or dehydration. Celiacs often have low blood pressure too.


Best wishes. I hope you find answers and feel well soon.

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#904002 Needing Words Of Advice/encouragement

Posted by nvsmom on 26 January 2014 - 04:16 PM

Thank you Gottaski and Nvsmom for the kind words. I haven't had gene testing, I guess I'll see if my PCP will order it. My last gastro made it clear that he could "do nothing more for you other than refer you to the mayo clinic.." So, I'm not wanting to even show my face there again!

Nvsmom-a king cake is a glorious sweet, cinnamon cake baked in a ring stuffed with anything you'd like. My favorite is strawberry and cream cheese : ) then Mardi gras colored (green, yellow, and purple) sugar is poured on top. I did try one place with a gluten-free version and it was awful. I think that's what started my gluten overload : (


Oh... that does sound good! LOL  I had a hard time walking away from my Grandma's sweet dough cinnamon bun recipes. I can still imagine the flavour and texture. Mmmm. I made a point of not having any gluten-free cinnamon buns for a good 6 months after going gluten-free. It gave my taste buds some time to (sort of) forget how much I loved them. When I finally did make them in a gluten-free version, I was pretty pleased with the results.  You might have to give up King cakes from a while so when you finally try a gluten-free version, it's quite a treat even if it's not the same. KWIM?


And just to confuse you further,  ;)  there is a small minority of celiacs who tested negative for the "celiac genes" (DQ2 and DQ8) so getting a negative test isn't 100% that it isn't celiac - it's somewhere around 95%.


Which blood tests did you have? As one who is IgA deficient, you would want the tTG IgG, EMA IgG, DGP IgG, and maybe the old (and less reliable) AGA IgG. By the way, being IgA deficient also points to celiac disease, although it's not diagnostic. About 5%, or 1/20, celiacs are IgA deficient which is higher than the regular population.

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#903976 Needing Words Of Advice/encouragement

Posted by nvsmom on 26 January 2014 - 01:56 PM

Ditto all that Lisa said. You haveNon-celiac gluten intolerance at the very least. That's basically the same as celiac disease but without the villi damage... but you have the beginning of villi damage so I would guess at celiac disease too.


You can be 100% gluten-free. You can do it. Yeah it sucks sometimes but you are really paying for those king cakes - a few minutes of pleasure and you are paying in obvious symptoms for days, and with less obvious internal damage or inflammation for weeks. I doubt they are worth it. What are king cakes, by the way? I'm in western Canada and haven't ever heard of that.  Could you make a gluten-free version of it?


I understand about missing foods. I was brought up with Ukrainian foods and thought I would never have another pierogy again. :( And I didn't for a good year and a half but then my mom, in a true labor of love, made some time consuming gluten-free pierogies for me. They were to die for. And no, they weren't quite the same as the wheat flour ones but they were a thousand times better than nothing.  Pirogies are like dumplings usually filled with potatoes and old cheddar and then slathered in butter and fried in onions. Mmmmmmmmm.


Skip eating out if it's too much for you. Meet up with everyone later for coffee or drinks. If you can't stand up to the temptation, then avoid situations where you will be tempted.


You need to keep yourself well. Food isn't worth poor health, bad quality of life or even dying young.


You can do it!

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#903864 What Do You Look For In A Doctor?

Posted by nvsmom on 25 January 2014 - 11:14 AM

Not having a know it all attitude. If a doctor is willing to say "I don't know but I'll find out" that is just wonderful. Almost every doctor I've been to has told me there is notrhing wrong or nothing they can do, and I trusted them so I just got worse and worse. I'm tough - I can take a lot of pain and discomfort - and I let things slide too long on a doctor's say so.


Otherwise, I like all or your lists.  :)

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#903710 Help, Newbie Here With Lots Of Questions.

Posted by nvsmom on 23 January 2014 - 08:34 PM

Welcome to the board.  :)


You don't need to keep everything separated unless it's likely to become contaminated before it is used on gluten-free cooking. Things like cutlery are safe if washed well but if your cutlery drawer is anything like mine, it tends to fill up with crumbs and that won't be safe unless the gluten-free person washes cutlery before using it.


Toasters are one appliance that you can't compromise on, if wheat flour is used in it, your hubby can never use it. He'll need his own toaster or put his toast in protective toaster packets every time he toasts something. Plastic or wood cooking utensils and teflon pans that are damaged can hold onto gluten and should not  be used with gluten-free food. Mesh collanders should be replaced.


It is true of all celiacs that they must be extra careful about cross contamination. a tiny crumb can set off the autoimmune reaction that will cause inflammation even if symptoms aren't obvious. If there is gluten in the house he'll need to be careful. Many of us just have gluten free homes so we don't have to be so careful all the time. Home is our safe haven.  :)


Yep, you'll have to check all seasonings for gluten. If you do baking you'll need to use baking soda and powder, as well as sugar that could not be contaminated with wheat by measuring spoons or cups. You'll have to check soups, boullion cubes and sauces like soy and worchestershire sauces. Read all your labels - every single one.


As for a flour conversion, they do sell gluten-free flours that you can substitute cup for cup but I don't know the brands as i've never used them. A google search should give you a few brands.


Good luck! And don't worry- it's quite a learning curve at first but it gets easier in a couple of months.  

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#903184 Do Any Of These Symptoms Sound Like Celiac Disease?

Posted by nvsmom on 19 January 2014 - 11:08 AM

Yes, those could be symptoms of celiac disease, you might as well get tested. This is list of symptoms to consider, and perhaps to give to your doctor: http://www.curecelia...SymptomList.pdf


Request as many tests as are available to you:

  • tTG IgA and tTG IgG
  • DGP IgA and DGP IgG
  • EMA IgA
  • total serum IgA (control test)
  • AGA IgA and AGA IgG (older and less reliable tests)

Continue eating gluten until all testing is done. Keep in mind that false negative can happen in blood tests; they arent common but they do happen.


There is genetic testing to see if you are more prone to getting the diease. DQ2 and DQ8 will let you know if you have a higher chance of getting celiac disease but there are a small minority who have celiac disease even though they do not have the DQ2 or DQ8 genes. It's not fool proof either.


There is also the endoscopic biopsy. If you have that done, make sure the doctors take at least 6 samples. Again, false negatives are a possibility.


Good luck with the testing and welcome to the board

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#902604 More Testing For Younger Son?

Posted by nvsmom on 13 January 2014 - 08:08 PM

(hugs) It's hard when your babies aren't well.  :(


You daughter did not have the proper celiac tests done.The serum (blood) IgA and IgG tests are like control tests for different parents of the immune system in the body. The total serum IgA is often run for celiac testing because a high proportion (1/20) of celiacs are deficient in IgA, compared to the regular population, which will affect celiac tests based on IgA (like tTG IgA, DGP IgA, and EMA IgA).


IgA deals with the part of the immune system that is in the mucosal lining, and the IgG (immunoglobulin G) is more of an systemic part of the immune system.


DGP stands for deaminated gliadin peptide. Endomysial AB (antibodies) is the EMA IgA. Anti tissue transglutaminase is the tTG. The old AGA tests are anti-gliadin antibodies.


Can you get them tested with DGP IgA and DGP IgG? They really are superior tests for kids. If you can't get any more testing done, you could do a gluten-free trila of a few months. If their health improves then you have a definite answer. If they do not go gluten-free, they should be retested every couple of years until at least adulthood as celiac disease can appear at any time - which usually just means that their antibody levels are finally high enough to be detectable. Hopefully tests will improve in the future.

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#902602 Grrrr Gene Testing-Results Not What I Expected

Posted by nvsmom on 13 January 2014 - 07:51 PM

Oh gee, I know you were hoping for a more definite result.  :(  I've never heard anything about gluten sensitivity genes either.


You could be in that minority of celiacs who do not have the DQ2 or DQ8 genes. I read (in Dangerous Grains I believe) that 90 and 94% of celiacs have the DQ2 and DQ8 genes respectively. There are a couple of people around here who are in the same boat - I just can't remember who...


The gold standard biopsy after a positive blood test seems like a bit of a crap shoot to me; I'm exaggerating a bit but I don't understand why doctors love it so much. They already had a positive test showing that your body is attempting to do damage when gliadin is in your system, just because they did't find damage doen't mean your body is trying to attack itself. They can miss finding the damage or perhaps your body is withstanding the autoimmune attack better than others do. Who knows... That was part of the reason I did not have the biopsy, I didn't want an ambiguous test to affect my resolve to live gluten-free.


You've had positive blood tests, you feel better gluten-free, and your health has improved. It's celiac disease. I've never found anything else that causes a high DGP. The grey area you are in is almost black. KWIM? You are making yourself better, just stick with it and let doctors call it whatever they want.



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#902051 Ttg Still Positive After 6 Mos.

Posted by nvsmom on 08 January 2014 - 08:17 PM

The tTG tests are slow to come down.  Did they test the DGP (deaminated gliadin peptides) as that one is a better test for checking how gluten-free you are - it tends to go up and down faster. How about the EMA IgA? That one shows advanced damage and usually comes down before the tTG tests too.


The tTG IgA can also be elevated from other health problems like thyroiditis, diabetes, chronic liver disease, crohn's, colitis, and infections. When those are a factor, they will often keep the tTG elevated at a low level.


Or it could just be taking a long time to come down. i was gluten-free for over a year and my ttG was still abnormal. It finally almost touched normal when I was on some mild steroids for another health issue. It can take a long time to normalize.


I would request the DGP and EMA tests as well the next time the doctor wants to check it. That could give you a better idea of whether it is cc or just a slower recovery.


Best wishes.

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#902047 Unconfirmed Diagnosis - And Lots Of Anger

Posted by nvsmom on 08 January 2014 - 07:49 PM

Good luck with the yogurt!  :)


I'm glad you're getting more positive too. You sound like you are moving in the right direction.

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#901366 I Think Its Celiac But Negative Blood Test, Opinions Appreciated

Posted by nvsmom on 03 January 2014 - 06:11 PM

I was going to ask about thyroid testing too. You have many of the same symptoms that I had (fatigue, headaches, Stomach pain, constipation, an all over body ache, dizzy spells when I stand up (my vision sort of "goes"), cold hands and feet, just feeling "not right")and I have both hypothyroidism and celiac disease. My hypothyroidism looked just "subclinical" but after starting meds, I've discovered that it basically wasn't working much anymore. Hypothyroidism can slow your metabolism byt a third so coldness, aches and pains, headaches, stomach issues are pretty common.


If you want to double check your thyroid, ask for these test:

  • TSH - should be near a 1 despite what ever normal range your lab uses.
  • Free T4 and Free T3 - should be in the 50-76% range of your lab's normal reference range. I had a high TSH and felt hypo when mine were in the bottom of the normal range.
  • TPO Ab

The dizziness when standing is postural hypotension... Do you get the tunnel vision too? I started a low dose of fludrocortisone (Florinef) to counter that... Almost fainting (from dropped blood pressure) when you stand is the opposite of normal.


The full celic lab panel is :

  • tTG IgA and tTG IgG - most popular tests
  • DGP IgA and DGP IgG - newer test that is good at dtecting earlier celiac
  • EMA IgA - tends to be positive once the villi damage is more advanced
  • total serum IgA - a control test to ensure you make enough IgA for accurate testing, 5% of celiacs don't
  • AGA IgA and AGA IgG - older and less reliable tests

This report discusses the tests more on pages 10-12:



If you go gluten-free without full testing or a diagnosis, make sure you give the diet many months to work. I was still having improvements after 6 months, and there were many symptoms that did not improve until I was on the correct thyroid meds.


Best wishes!

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#901096 New To The Forum, Questions

Posted by nvsmom on 31 December 2013 - 01:31 PM

I had a doctor tell, me when I was a child, that I just happened to get stomach aches after every meal and learn to live with it. We listened to the doctor so I had stomach aches for another 30 years... and developed other autoimmune diseases, chronic migraines and arthralgias.... Don't listen to that nurse.  :(


I too would advise you get tested before going gluten-free. The tests won't be valid if you do it later on while gluten-free.


If you do decide to go gluten-free, recovery time really varies. Stomach aches and bloating, as well as headaches are often the first to improve (within days) but some people experience withdrawal, causing headaches, fatigue and some serious mood swings, so be aware that you could feel worse before you get better.  BMs can take months to sort out. Nutrient levels, arthralgias, and cognitive issues seem to take the longest to heal - many months up to a few years.  The gluten-free diet is anything BUT a quick fix.


Best wishes and welcome to the board.

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#901093 Wheat Flour

Posted by nvsmom on 31 December 2013 - 01:21 PM

I seemed to react slightly differently to different gluten containing products - I know there was a difference between bread and beer - but it wasn't a huge difference. To be honest, when I was diagnosed I was eating gluten most days of the week so I was living in a pretty constant state of illness and inflammation so I tended to not notice the acute symptoms flare-ups much. For example, I used to get a stomach from waffles in the morning but I thought it was the syrup and cut back on that. Anyway, I noticed stomach pain more on an empty stomach.

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#900245 Gluten Intolerance Or Celiac Disease?

Posted by nvsmom on 19 December 2013 - 06:28 PM

Someone around here said IBS stands for " I be stumped". Seems bogus to me too.


Non-celiac gluten intolerance (NCGI) can be found in 6 to (over) 10% of the population. It is more common than celiac disease, has all the same symptoms as celiac disease (except the villi damage) and can only be treated with a gluten-free diet... That how you diagnose it too as there are no accepted blood tests at this time although some think the AGA (anti-gliadin antibodies) tests may show gluten intolerance in those with NCGI as well.


Two of my three kids had symptoms like yours but they also tested negative. I am a celiac so I chose to not trust the tests and made our house gluten-free - they are doing much better now. It could be NCGI or it could be celiac disease but it really makes no difference in how one treats the diseases. It's just a label.


Good luck!

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