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Member Since 12 Jun 2012
Offline Last Active Today, 02:47 PM

#905731 Got Accidentally Glutened On Vacation - What Should I Have Done?

Posted by nvsmom on 11 February 2014 - 11:35 AM

Thanks Jamie.  :)

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#905729 New With Borderline Test Results, Opinions?

Posted by nvsmom on 11 February 2014 - 11:28 AM

My doctor didn't give me any reason for why my vitamin d levels are so low, he just said they are obscenely low and you need to get them up with 3 months of once a week megadoses of vitamin d (a loading dose).  After the 3 months, I'll get my vitamin d levels retested to see if I can move to a maintenance dose that's closer to the daily recommended dose and if they haven't gone up, it would signify an absorption issue.


He does seem to acknowledge that he isn't really sure what's going on, he dismissed the almost positive results and just said "I tested you and all of it came back negative so it's not sprue" and then gave me a referral for a gastroenterolgist if I wanted to go further with tests.  Honestly, I know I feel a lot better without gluten, I just was looking for a positive test so I could definitively say "This is the problem and it's not all in my head".  My results are good enough for me, they're borderline positive on 2 tests, one of them being artificially low because I am IgA deficient (which I've at least read appears to be more common in celiacs?) and I'm severely vitamin D deficient which is also associated with untreated celiac disease from what I've read.  I'm really glad that others agree with my analysis and that it's not just me analyzing things until they show what I think they should show  ^_^


Yes, IgA deficiency is found in 1/20 celiacs which is higher than the regular population. You're right on that.


With borderline tests, after being gluten free and not having an adequate gluten challenge, and with your low IgA levels (affecting some tests), I think it's celiac. You doctor is just too black and white in his thinking; there's a lot of grey to consider there. If you test results were just one point higher, it doesn't suddenly mean that your celiac disease was activated. It would have bee just marginally higher in antibody amounts to get a positive result.


Best wishes

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#905408 Is Endoscopy Needed For My 5 Year Old Daughter?

Posted by nvsmom on 07 February 2014 - 04:10 PM

One positive test is caused by celiac disease about 95% of the time. Three positive tests is a sure thing - she has celiac disease.  :(  This report has more info on the blood tests on pages 10-12, and info on the endoscopy from pages 7-10:



The endoscopy is helpful for a few reasons: 1. It gives the doctors a chance to look for other problems.  2. it provides a baseline to know where you are starting from in the rare case that her healing is slow or non-existent.   3. It makes it easier (for some) to follow a strict gluten-free diet.  4.  Some doctors won't give a diagnosis without one, and it may be needed for future (school) accommodations.


That all being said, I skipped the endoscopy when I had two positive tests. I knew that damaged parts can be missed in biopsies which can make some people doubt the diagnosis and make it harder to stay gluten-free. My symptoms did improve on the gluten-free diet so I'm confident I did the right thing.


It is a personal choice. Do what works best for your family.


Welcome to the board.  :)

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#905245 New To This Forum, New To This Realization...

Posted by nvsmom on 06 February 2014 - 09:56 AM

Welcome to the board.  :) 


A gluten challenge before testing usually requires a good 2 month of eating gluten regularly (about 2 slices of bread per day). I can see how you'd like to skip that! An endoscopic biopsy requires a shorter gluten challenge of about 2 or so weeks, but the wait to see a GI specialist in my home town, Calgary, is about a year so I'm not sure if that's a good fit for you either.  


Another option would be to check your rash for dh (dermatitis herpetiformis) which is also a way to diagnose celiac. A dermatologist would take a biopsy beside the rash, and that can show autoimmune antibodies that celiacs have. You'd need to be able to get in to see a dermatologist on pretty short notice though. Check out the dh board for more info.


If you have a gluten sensitivity, you have either celiac disease or non-celiac gluten intolerance (NCGI) which has all the same symptoms as a celiac minus the villi damage (which the blood tests show is being attempted) or the dh rash.  You definitely have one problem... Tell people you have NCGI with possibility of celiac disease, if they don't respect that - that just says something about the type of person they are or their ignorance. It has nothing to do with you.


That's a shame people have commented like that. They really showed their ignorance. Even if you ARE passing on the bread to stay low on carbs so you stay slim - thats a GOOD thing! Eating low carb is generally a pretty healthy way to eat. Who wants to be fat anyways?  :huh: Even if you eat a typical diet and aren't in the mood for bread, so what? It's really a rather dumb thing to have said. LOL 


I like to counter with sweetness and guilt: " Oh, I know that my diet is a hassle but I so appreciate you helping me stay healthy.... I'll bring my own food because our diet is a pain and it's difficult to cook for if you don't do it already..." Stuff like that.


Or you could always sarcastically deadpan: "Yes, I am lying and just faking major health issues just so I can skip bread at this meal." LOL  :rolleyes:


I do want to mention though, be really careful eating out at people's houses. Most marinades, sauces and some spices will contain gluten. Even if they make you a gluten-free meal, you can't use their butter on your potatoes because it may be contaminated; and some of their cooking supplies (spatula, colanders, non-stick frying pans) may also have gluten stuck in them and potentially make you sick. Be careful.



I trust my body telling me that gluten is just not something it wants to deal with anymore. I feel better without it, my body responds better without it. But at this point, I feel as if I need to get a clinical diagnosis in order for my family and my fiances' family to believe me.
But I also know from reading here that blood panels can come back negative. I also hesitate to eat a TON of gluten (even briefly) just to get a 'positive', especially with my new job.

So at this point, I'm wondering: I want to go to my doctor and tell him my concerns. He's an amazing doctor, very open-minded and trusts that people know their bodies. But if I get a negative blood panel, what do I tell people? Is it morally okay to tell people you have gluten intolerance even without a professional diagnosis? Or should I just suck it up, gluten it up and try for that positive professional diagnosis?


I'm so glad I've found this place. The amount of information here is incredible. Thank you



In Calgary, the only celiac disease tests available (at least last year) are the tTG IgA (tissue transglutaminase) and the EMA IgA (endomysial) which they only run if you have had a positive tTG IgA. The tTG IgA is a pretty good test but it does miss a minority of celiacs, especially those who are IgA deficient - run a total serum Immunoglobulin A (IgA) to check for that.


This report discusses the tests on pages 10-12. The sensitivity of the tTG IgA is 75-95% (page 12) which means that it will miss 5-25% of all celiacs.



If you can get the other tests (DGP IgA and IgG, tTG IgG) try to do so... if you test that is.


And no, I don't think it's wrong to say you have celiac disease, but you might want to consider saying NCGI or possible celiac disease just to be honest. Both are very real health issues, and that way you don't have to worry about fudging the truth. If people ask why you haven't tested, juts honestly tell them that the testing available is not very reliable.


If you decide to test (blood tests) and get a negative, then you know it's probably NCGI with a chance of it being celiac disease. If you have other autoimmune disorders, or your family does, that does increase the odds that it's celiac disease. A family history of diabetes (type 1), crohn's rheumatoid arthritis, Raynaud's, etc will make it more likely that you are dealing with celiac disease.


I hope that made sense.  :)


Stay warm! Brrrrrrrrrrr :ph34r:

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#904875 Finally Had A Complete Thyroid Panel.

Posted by nvsmom on 03 February 2014 - 10:11 AM

An endocrinologist is a good place to start. I had to go to an alternative practitioner (orthomolecular MD) because endocrinologist do not see people for "plain old" hypothyroidism up here... well they do but it takes a year to get in.


I pm'ed you.

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#904817 Finally Had A Complete Thyroid Panel.

Posted by nvsmom on 02 February 2014 - 09:43 PM

Be careful with that normal range, it can include a lot of people with thyroid problems. TSH should be near a one regardless of the range. FreeT3 and Free T4 should be in the 50-75% portion of the lab's normal range. TPO Ab should be low too.

Just makes sure you look at the whole picture before dismissing thyroid problems. They can be hard to see. Take me for example, for years my TSH was between a 4 and a 7. My doctors called that normal. When my TSH finally went high enough for the doctors to admit to a problem, my free T3 and free T4 were still normal (albeit at the bottom of normal) as was my TPO Ab (top of range).... I am not on a full replacement dose of thyroid in order to feel better; my thyroid was not doing much even though it looked fine.

I hope the tests are right and everything is fine.
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#904599 Need Ideas For High Protein Smoothies For A Child

Posted by nvsmom on 31 January 2014 - 10:27 AM

I use Vega protein powder in my kids smoothies; usually chocolate because the vanilla flavour turns everything green. LOL I also add avocado, hemp seeds/hearts, coconut yogurt, coconut milk or cream, vegggies like carrots, cucs and spinach, and fruit like bananas, berries, kiwis, or mangoes. I blend it all in a great blender and send it out with them when we are out for the day.


The Vega powder is fine with just a coconut milk too. I usually add it, along with extra eggs, into all baking I do too.... My kids have milk and nut allergies, and are not big meat eaters either.  :)

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#904596 Has Your Reaction To Gluten Changed?

Posted by nvsmom on 31 January 2014 - 10:16 AM

Like desperateladysaved said, I think we just notice reactions a bit more because we are in a healthier place.


Think of health as a ladder. When we are in good health we are higher on the ladder. When in poor health we are lower on the ladder. When we get glutened it knocks us down to lower health. If we were already low on the ladder, the fall isn't noticeable but when we are higher up, we feel the fall more.

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#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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