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nvsmom

Member Since 12 Jun 2012
Offline Last Active Today, 03:33 PM
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#890069 Do You Take Your Celiac Disease Seriously?

Posted by nvsmom on 28 September 2013 - 03:06 PM

Yes, you would leave so that I'd have time to bake some other delicious gluten-free baked good!  And....if it's later in the day, a glass of wine or a nice cocktail!   If I could just get back cheese!!! 

Cheese... after over a year gluten-free, I'm dabbling in some dairy again but I'm afraid to restart cheese because I don't think I could stop again.  LOL

 

I take the diet very seriously for two reasons:

  1. I was diagnosed in middle age so I had developed more AI diseases and  painful problems that were getting really hard to ignore. With the way things were going, I could clearly picture myself as a balding, stooped over 65 year old who needs a walker to get around and couldn't open a bottle if my life depended on it. If I had been diagnosed 20 or 30 years earlier into this disease I could see having a harder time staying gluten-free simply because the stakes weren't so high yet - I hadn't lost so much at that time.
  2. My kids have issues with gluten and there is NO WAY I will let them experience the health problems I've had just for convenience or a treat. I model healthy eating, spend a tonne on fresh foods and organics, and don't let them near gluten in the hopes that they will grow up to be healthy... I won't risk them.... I'm going all mama-bear here.  LOL ;)

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#888140 Could Celiac Be Causing My Problems?

Posted by nvsmom on 11 September 2013 - 08:28 PM

Welcome to the board. :)

I have celiac disease and a poorly functioning thyroid, and your symptoms sound very much like mine were. Headaches, constant constipation, stomach aches and bloating, confusion, and hair loss. Based on my own experiences, I think you should get tested for celiac disease.

The panel you listed looks really good. Many doctors will run the same ones for you but I understand wanting to get it done yourself. Don't stop eating gluten until the testing is done or it could affect the accuracy. Most doctors seem to recommend about two slices of bread per day for about two months ( if you were previously gluten-free or gluten light) before testing is done.

It sounds like you need to re-address your thyroid treatment too. Many patents with poor thyroid function find they need their TSH to be close to a 1, and their free T3 and free T4 to be in the 50-75% range of your lab's normal reference range in order to feel well. T4 meds alone (Synthoid) isn't right for everyone either. I tried synthroid for quite a while before giving up on it - I just never felt well and it couldn't get my FT3 above the bottom quarter of my lab's normal range. I needed to switch to natural desiccated thyroid before I felt truly well. I don't know if it was just the extra T3 or if it was the T2, T1, T0, or calcitonin but it worked for me. It got my FT3 to 75% of the normal range, although it did drop my TSH to 0.01 ( appears hyper but I feel fine, and I have been hyper before.

Good luck, let us know how it goes.
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#887836 How To Make Crunchy Chicken Nuggets?

Posted by nvsmom on 09 September 2013 - 02:32 PM

Flax seeds, rather than flax meal, might make a good crunchy coating.

 

I find that if I want crunch, I need to fry them in some oil - I try not to be excessive with it.


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#886999 Fellow Homeschoolers Sign In!

Posted by nvsmom on 03 September 2013 - 07:00 AM

I'm hs'ing my three boys (grades 1,4,6) and have since the beginning. It's been a really good experience for us so far. We started because my oldest was very bright and did not have much interest in learning something that wasn't an interest of his. for instance, we had the freedm to study ancient Greece and Rome while other kids were studying "Our Comminity" or the province.  The freedom to study an interest is really helpful.

 

We're also in it to keep our kids more family oriented rather than peer oriented, and so far so good.... I'll know if we've truly been successful after the teenaged years.

 

We don't use many texts but we do like Singapor Math, Life of Fred, and Miquon Math. Story of the World is a good resource too. My kids use Rosetta Stone for learning German and Japanese. Cathy Duffy's book 101 Top Homeschool Picks (I think) goes through some of the more popular texts and resources


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#886875 Newbie Question About Vitamin Supplementation

Posted by nvsmom on 02 September 2013 - 07:43 AM

It is a good idea to get your nutrient levels tested before taking extra vitamins. Many celiacs find that they need mega doses of vitamins for a few months or years until things heal completely. It's not a good idea to take mega doses unless you need it. KWIM?

Some of us are only low in a couple of spots so that is another good reason to check. For instance, I am low inA and almost low in D and Mg, but I am high in B12 and Ca, and normal in the others.

The common low bits and nutrients are: D, B's (12,2,6), iron, ferritin, potassium, magnesium, zinc, A, copper, calcium.
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#886790 Accepting My Ibs Diagnosis, Odd Symptoms That Don't "fit" Anywhere

Posted by nvsmom on 01 September 2013 - 08:40 AM

Ditto the others, it sounds like celiac disease to me, and it looks like it started you into the world of hashi's and probably other autoimmune issues.

 

I too had many of your symptoms, and a few you didn't list, and they were all celiac disease and hashi's related. I also have a AI thombocytopenia that I don't doubt was triggered by untreated celiac disease. Go gluten-free, give it a good 6 months... many of us get worse before we get better so don't just give the diet a couple of months, give it half a year at least. I felt worse at 3 months gluten-free than I did before going gluten-free, but I feel healthy now, after another year has gone by.  :)

 

Your TSH is pretty high for hyper symptoms - that surprises me.  How are your free t4 and free T3? Those give a MUCH more accurate picture of what hormones are available for use than the inferior T4 and T3 would. Normally those with hashis seem to feel their best when TSH is near a 1, and when free T4 and free T3 are in the 50-75% range of your lab's normal reference range, but this does vary from person to person so a TSH of 3 might be good for you. For me, I feel good with a TSH of 0.01, and a free T3 near the 75% point of my lab's range; when my TSH is a 3, I feel very hypo.

 

You might want to get your vitamin and nutrient levels checked too. some of your symptoms can be caused by low vitamin levels. The usual culprits are low B's (B12,6,2), D, A, iron, ferritin, potassium, magnesium, copper, zinc... I think I'm missing one... Anyway, you might be low in one or two but there is no way to check unless you check them all. Right now, the doctors' darlings are B12 and D but that's not always low for everyone; for example, my B12 exceeded the upper limit but my vitamin A is my low one.


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#885776 Newly Dx - Reading And Learning A Lot

Posted by nvsmom on 25 August 2013 - 01:36 PM

My birthday is in September so it should be interesting to see how I get along with the gluten free sweets. I have read many recipes and it seems complicated to have a consistent product as you have to mix the flours to get a nice cake texture. But I don't really need cake in my life but for birthday's it would be nice. 

 

 

Coconut flours and almond flours are easy to work with and require fewer flour combinations than when dealing with the starches and rice flours. They are also lower in carbs which is another bonus.   :) Try googling almond or coconut flour cupcakes and I'm sure you'll find some tasty treats.

 

We are dairy free too and substitute coconut milk, cream or oil for most baking recipes with lots of success. 


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#885731 Symptons Worsen With Time - Untreated

Posted by nvsmom on 25 August 2013 - 08:57 AM

Mine did too. And then new symptoms would show up and then they got worse over time too.... It just slowly sneaks up on you until it gets really hard to ignore, if not impossible. I didn't realize how bad I felt until I started to feel better.


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#885588 Vitamins And Minerals?

Posted by nvsmom on 24 August 2013 - 08:20 AM

I supplement very very heavily, and have for years, even before I was diagnosed because I was always looking for that extra tiny bit of energy. You are right in that celiacs often don't absorb the nutrients in supplements well but I always figured that every little bit extra would help. If I only absorb (lte's say) 5% of vitamin A, then I should take a LOT more than most people and possibly take vitamin shots. KWIM?

 

D is safe to take at 10,000 IU - you could take more, I take between 10-20,000 IU per day. If you take B12, use the sublingual ones as they are largely absorbed in the mouth; I think it's called methylcolbum.... something or other. LOL You can also get it as a shot if you are low.

 

This is my list:

L-glutamine

digestive enzyme

DHEA

Boron

taurine

arginine

zince

A (pills and shots - up to 100,000 IU per day)

D

B12,6,

biotin 

Ca citrate 

Mg

C

multi vit

probiotic

glutathione

CoQ10

siberian ginsing

Maca

iodine

milk thistle

licorice

green tea

curcumin

cod liver oil and fish oils

glucosamine chondroitin (sp?)

melatonin

 

And then I take thyroid and corticosteriods too. I have the medicine cabinet of a 95 year old woman, but I am actually starting to feel well. :) I figure, if I'm going to spend money, it might as well be on my health.


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#885586 Newly Diagnosed In July Still Constipated : Herbal Detox .

Posted by nvsmom on 24 August 2013 - 08:06 AM

My constipation never improved until I had my thyroid treated close to optimum levels. I was gluten-free for about 9 months before C started to go, and this is when I got my TSH back within the normal range. Now that I have my thyroid optimally treated (TSH is very low and I actually feel good) C is completely gone and I'm having issues with D. I can;t win. LOL ;)

 

If you get your thyroid checked, those with thyroiditis ideally should have a TSH near a 1, a free T4 and free T3 in the 50-75% range of your lab's normal reference range, and a low TPO Ab.

 

When I had C, I did detoxes and took a ridiculous amount of fibre supplements. Handful of pills... didn't help much. I have found that nuts, prunes and coconut helps get things moving (a bit more) for me. Coffee really helped me too. I hope you find something that helps.

 

And welcome to the board.  :)


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#885153 Apparently You Guys Were Right, It's All In My Head!

Posted by nvsmom on 21 August 2013 - 06:53 AM

I didn't start to feel really well, besides some intestinal improvements, until I was 6 months gluten-free; in fact (for a while) I felt worse after a few months gluten-free. I am now over one year gluten-free and I still have symptoms that my hubby has never experienced although they are less severe than they used to be. It's not an overnight fix.

 

If you think it's NCGI then stick with the diet for longer and look into other options in the meantime.... and drop dairy.  Good luck.


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#884451 Second Guessing Diagnosis

Posted by nvsmom on 15 August 2013 - 12:13 PM

There are quite a few people around here who were diagnosed using the DGP tests, it seems to catch many celiacs that the tTG misses - the tTG IgA misses up to 25% of celiacs.

 

There are also many who were diagnosed using only the IgG version of tests rather than the Iga versions... doctors seem to doubt those too for some reason.

 

From what I have seen, many doctors want all the stars and moons to align before they will give out a definitive diagnosis... I have no idea why.  :rolleyes:  If the doctor thought your DGP lab result was a fluke, did he order a repeat test? If not, I'm guessing he is one of those reluctant to diagnose doctors.

 

Good luck with the endoscopy.  Keep eating gluten until your testing is done.


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#883916 Blood Test Results - 2 Weeks In To Gluten Challenge

Posted by nvsmom on 12 August 2013 - 07:13 AM

I can't remember why you are doing a biopsy...You had a positive AGA IgA, which means a gliadin/gluten intolerance; and a positive tTG IgA, which means your body is making autoantibodies against the mucosal lining of your small intestine - so damage was being attempted; and you had a very positive result to the gluten-free diet. Did some other health issues come up so that you need to revisit the fact that you most likely are a celiac (of whom doctors missed the damage)?

 

Now you also have a positive DGP IgA  after only 2 weeks of gluten - pretty impressive by the way because many people need two months in order make enough DGP antibodies to register on tests. Your other tests were negative at 2 weeks, but that is quite the norm.  Not many people have so many positive celiac tests; most only have one or two.  The only one you are missing is the EMA IgA but that only shows up after advanced damage has happened and will definitely need more than 2 weeks to raise it.... Not that you'd want to.  ;)

 

Anyway, back to your question... Many doctors only require a two week gluten challeng for a biopsy so 4 weeks will probably be enough. If you want to be sure, you could delay it for another month and that should be enough time to do plenty of damage to yourself (these tests are quite barbaric). If the challenge is getting too difficult, then do it after the four weeks. you don't want to make yourself too sick. There are a few board members around here who did gluten challenges but they set themselves back many many months and more than one member apparently ("coincidentally") set off a permenent health problem. It's good to have a diagnosis but not if you are going to make yourself have longterm problems.  KWIM?

 

Good luck with that biopsy.  :)


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#883743 T-Transglutaminase Iga Ab

Posted by nvsmom on 11 August 2013 - 08:05 AM

That looks like the anti-gliadin antibody tesst (AGA IgG and AGA IgG), although it couldpossibly be the deaminated gliadin peptide antibodies (DGP tests - don't think it is though). The AGA tests are for a gliadin (gluten) intolerance and are thought by some to work for both celiacs and those with NCGI, so a positive AGA does not always mean celiac disease... but with a positive tTG iGA test, which indicates damage is being attempted on the intestines, it does indicate celiac disease.

 

As time goes on, those values will fall to normal too, and possibly faster than the tTG test does. They are only approximately 50-70% higher than the upper limit, so they are high, but not radically so. Once gliadin is totally out of your system, and your body has calmed down, those numbers will come down.


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#883733 T-Transglutaminase Iga Ab

Posted by nvsmom on 11 August 2013 - 07:21 AM

You've come down quite a bit (from over 100) - who knows how high it actually was, they just stopped measuring at 100. If you are down to 45, you must be doing something right!  :)

 

My tTG IgA was >200 but my reference range was 0-20. My last test was 38... I think was. I had been gluten-free for a year with just a few accidents, and no accidents had happened for about 5 months prior to that test.

 

There are other (unlucky) board members who took a few years for their levels to come down. Gottaski (Lisa) is one of those and I believe her levels actually rose in her first year gluten-free. It's just a slower process in some of us so we have to be more patient.  Keep doing what you are doing, it's working.  :)


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