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nvsmom

Member Since 12 Jun 2012
Offline Last Active Jul 22 2015 07:25 PM
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#917893 What Do I Do?

Posted by on 26 May 2014 - 05:03 PM

I'm glad you are feeling better in spite of the mediacl advice you received. That's a crying shame that they did not share the correct results of your biopsy with you! :angry:

 

It sounds like celiac disease to me too.  I think you did the right thing going gluten-free when you did.  If you decide to do more testing, you'll need to resume eating gluten (equivalent of 1-2 slices of bread per day) for 2-4 weeks for the biopsy, and 8-12 weeks for the blood tests. The longer the better.  :(

 

If you get the blood tests done, these are the ones to ask for:

  • tTG IgA and tTG IgG (most common tests)
  • DGP IgA and DGP IgG (newer tests which areoften better for diagnosing "early" celiac disease)
  • EMA IgA (detects more advanced celiac disease, and is rarely positive if the tTG IgA is negative)
  • AGA IgA and AGA IgG (older and less reliable tests)
  • total serum IgA (a control  test)

This report has more info on the tsets on pages 8-12: http://www.worldgast..._long_FINAL.pdf

 

Good luck with whatever you decide to do.  :)


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#917821 Igg Against Ttg 18 Month Old Babies Results....

Posted by on 26 May 2014 - 06:25 AM

A positive tTG IgG probably means celiac. When you see the doctor ask for the rest of the celiac tests to be run: tTG IgA, DGP IgA, DGP IgG, total serum IgA, EMA IgA.

 

Good luck!


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#917390 Blood Transfusion And Blood Panel

Posted by on 23 May 2014 - 02:56 PM

I had a postive on endomysial Antibody IGA and a TTG score of 17.

 

The blood transfusion came out of nowhere!  I was on day 1 of my period. (Which I bleed through a tampon in less than an hour for 2 full days at least and have this cycle every 17-23 days).  
 Hyper and excited to teach a new boot camp class in that area and suddenly got dizzy and dropped.   I was taken to the hospital and my hemoglobin was a 7.6.   Since the transfusion I have been able to carry on my normal life but I need more sleep, I'm foggy mentally and lost some drive.  I haven't felt even 50% of what I used to feel. 

Before that I bounced around on top of the world.  I hated to even sleep.  I was mad when I had to get the 4-5 hours my body needed. 


I guess I do have some GI things but I thought it was normal.  I feel bloated after a huge meal. ( I was eating 3000 calories a day because I was exercising 2 hours or so every day with classes).     Maybe gassy too.  But I eat triple the amount of veggies that normal people eat also.   

 

A positive EMA IgA is caused by celiac disease 99-100% of the time.  If you combine that with a positive tTG IgA, then a celiac diagnosis is a sure thing.  :(  This report (page 12)  has info on the tests and shows that the specificity (what percentage of positive results are caused by celiac disease) of the tests you had is quite high. http://www.worldgast..._long_FINAL.pdf

 

That's one of the problems when it comes to recognizing celiac symptoms is that many are insidious, and creep up so slowly that we don't notice - feeling poorly (with bloating and stomach aches) becomes the new normal.  Once your anemia issue is addressed, I bet you'll be pleasantly surprised how you feel better than you did in the past.

 

I do hope the doctors have figured out what caused your sudden anemia and are addressing the cause, and not just treating the problem.  Hopefully it was celiac disease related and it will improve after being gluten-free a few months.

 

Hang in there. It's a lot to wrap your head around but remind yourself that it could be worse.  We have a disease that requires a shift in our diet to treat. No dangerous medications or surgeries - we just have to watch what we eat. You sound like someone who was already health conscious so I bet you will be able to make the shift to gluten-free pretty smoothly... Just don't go gluten-free until after the GI appointment, if you can wait.

 

Best wishes.


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#917124 Joint Pain After Being gluten-free 2 Years - Could Celiac Still Be Causing That?

Posted by on 22 May 2014 - 12:48 PM

Hi Nicole,

 

Are you swollen?  I know of a test for this.  Fold your fingertips up against the base of your fingers.  If they touch flat against themselves, they are not swollen, but it they don't reach they are swollen. Try looking up the lymph system.  There are many nodes in the groin.  I am having swelling (but not joint pain).  I removed all of the foods that I had antibodies to, almost every food I ate over the years and my swelling seems to be subsiding.  I mentioned this when you said "Joint pain,"  because while on gluten, I did experience this swelling and joint pain together.

 

I am also 2 years gluten free after decades of symptoms.  I also avoid doctors usually, because the treatments they have given me for years seem worse than the problems I had.  Do you feel your body is in transition still?  I feel mine is even after two years.

 

Dee

 

No, they don't seem swollen. I tried your fingertip bending test, and I could do it, although it hurts. LOL   :rolleyes:

 

At this point, I have no idea what my body is doing. LOL  I had many symptoms improve after going gluten-free like gut bloating, migraines, stomach aches, and plantar fasciitis. I had some things that I thought got better, like hair loss, but it continues to pop up (or off) but to a lesser extent than in my past.

 

I don't feel in transition but things could still be changing I suppose. I did have a mildly positive tTG IgA after a year gluten-free that went to almost normal while I was on steroids so I am guessing my recovery was going slower than most... I'm special. LOL ;) :rolleyes:

 

Thanks. :)


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#916814 A Little Bit Confused...

Posted by on 20 May 2014 - 02:50 PM

Below is a link to a site I found for a lab work place in Atlanta that offers celiac testing without a doctor's orders. Can someone tell me which of the tests listed I would need to get done?

http://requestatest.com/celiac-testing

The Celiac Disease Complete Panel (second test) looks the best to me. Really all it is missing is the EMA IgA, and that one is rarely positive if the tTG IgA is not.

 

Good luck.


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#916229 Mushroom (Neroli) Memorial Thread

Posted by on 16 May 2014 - 06:55 AM

I was thinking of her the other day too.  :( She was just a lovely person.


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#915688 Help- Sick Children Taken Away From Us

Posted by on 10 May 2014 - 07:35 PM

The tests that should be done for celiac disease are:

  • tTG IgA and tTG IgG (anti-tissue transglutiminase)
  • DGP IgA and DGP IgG (deaminated gliadin peptides)
  • EMA IgA (endomysial antibodies)
  • total serum IgA - a control test
  • AGA IgA and AGA IgG (anti-gliadin antibodies) - an older and less reliable test

The DGP IgA and IgG are the best tests for young children, followed by the tTG tests. The EMA IgA is positive in those with advanced damage - not positive as often in young children.

 

They must be consuming gluten (about a slice of bread, or the equivalent, per day for 8-12 weeks prior to testing to achieve the most accurate results possible. Young children do tend to have more false negative results though. One theory for that is the children have not been exposed long enough to build up enough autoantibodies that while show up in testing.

 

An endoscopic biopsy requires 2-4 weeks of gluten but it's a more invasive procedure.

 

Here are some reports to back it all up:

http://www.worldgast..._long_FINAL.pdf

http://pediatrics.aa...2-3765.full.pdf

http://www.jfponline...tt_news]=172034

And an interesting blog:

http://www.celiac.co...celiac-disease/

 

I am sorry this has happened to your family.   :(  I hope the kids are well soon and this mess gets sorted out quickly...  Best wishes.


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#915550 Back To Square One

Posted by on 08 May 2014 - 07:34 PM

Cances are it was just the one tTG IgA test. If possible request the DGP IgA, DGP IgG, tTG IgG, EMA IgA, total serum IgA, and possibly the older AGA IgA and AGA IgG tests. That will give you more info to go on.

And chronic constipation? That s a symptom, not a cause.... That paed sounds pretty lazy...
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#915246 So Skinny :(

Posted by on 06 May 2014 - 08:16 AM

Aw.  :( Poor guy.

 

Is there anything like a cadets program where you are? It could be a Canadian thing... Anyway, Cadets starts at age 12 up here, and one can join army, sea or air cadets.  It is very military run with learning to shoot, sail, fly and all sorts of stuff.  My 11 year old joined the junior Naval cadets (ages 9-12) and loves it. They do lots of marching, standing at attention, learning naval information, going to camps (band, shooting, general, etc), and some join extra sections like band or guard. This spring they get to learn how to sail.... for free!  An awesome experience for someone who likes the military.

 

What about being a spy?  That stuff is almost as cool.  We have one young friend who is determined to join CSIS and is teaching himself french so he will be prepared. LOL


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#915015 Interpreting Your Celiac Genetic Results

Posted by on 04 May 2014 - 09:29 AM

You have a great grasp on all that. Thanks for the summary.


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#914632 I've Been Wondering About Our Differences

Posted by on 30 April 2014 - 07:55 PM

I think that "less sensitive" just means that the symptoms are not as extreme as someone "more sensitive".  They just aren't feeling the reaction in the same way.

 

It is sort of like how one person experiences a virus in a different way than others would. If person A only gets the sniffles and a mild cough with a virus and person B gets a fever and ends up with a sinus infection that lasts two weeks, it doesn't mean that there are less viruses invading their cells, they have simply reacted differently to the same virus... Like how celiacs react differently to an exposure.

 

I am a firm believer that intestinal damage has very little to do with symptoms. Consider someone with non-celiac gluten intolerance (NCGI), they has absolutely no intestinal damage but they may have much more severe symptoms than some celiacs.

 

I for instance do not have a horrendous immediate reaction to gluten. If glutened I will bloat, get a stomach ache and possibly a migraine, and feel tired.  Annoying symptoms but I can function okay.  With repeated exposure I get worse symptoms with more fatigue, hair loss, foot pain, joint pain, C, moodiness and such - the joint pain is the big one for me.  

 

My symptoms are not severe and I do not think I would be classified as supersensitive... For about a month i was eating a few fries a couple of times a week that had wheat starch on them and that just caused my symptoms to grow slowly so I had a hard time figuring out if I was sick or what - doesn't seem sensitive.  But then another time I had a gluten-free beer that was supposed to be gluten-free to 6ppm - whoa, did I react to that! 

 

So different reactions at different times to different products. I think my body just responded differently based on my health at the moment just like I would respond differently to a virus depending on my health at the time of exposure.

 

But, that's all just my opinion and I could be very very wrong... or right.  ;)  Time and research will tell.


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#914426 Can I Have Gluten Intolerance?

Posted by on 29 April 2014 - 09:16 AM

A DGP IgA most likely points to celiac disease, and since your symptoms are improving after only 40 days on the gluten-free diet, I would guess with confidence that you have celiac disease. :(

 

Keep in mind that there is a very very small minority of celiacs that were negative on the genetic tests but still had a positive celiac test. It's unusual, but it can happen. Your diet will not affect the results.

 

Good luck with the 14 day gluten challenge and biopsy. Try to ensure your doctor takes at least 6 samples for biopsy.  I hope you find the answers you are looking for.


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#913687 Possible Celiac?

Posted by on 23 April 2014 - 04:52 PM

Thanks for the welcomes.

 

This is the coolest uncool club that I never wanted to be a part of...... :P

LOL  :lol:  Hope you feel well soon!


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#913685 Preparing For Blood Test Need Help!

Posted by on 23 April 2014 - 04:48 PM

Welcome to the board.  :)

 

Most specialists agree that a gluten challenge of 8-12 weeks (the longer the better), while eating the equivalent of 1-2 slices of bread per day, is best for accurate celiac disease testing. Some people's antibodies seem to go down to normal levels within weeks while others take years; also, some people have higher test results than others (which does not seem to correlate to intestinal damage) so people with lower positives can be missed if they are not eating adequate gluten.

 

Increasing your gluten intake for a few weeks prior to testing will more likely give you a stronger positive. I don't know if two weeks would be enough for you if you are gluten-lite right now.  

 

If you are able to be retested after 6+ more weeks of eating larger amounts of gluten if the first is negative, then I would say do it soon BUT if you only get one shot at testing, I would delay testing for a month or so depending on how little gluten you were eating this spring.

 

Good luck!


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#913350 14 Mo Old Tested Over The Weekend...

Posted by on 21 April 2014 - 08:42 AM

Welcome to the board. :)

 

You asked:

Can she still be celiac with a neg test?

Yes. False negative results are more common in babies and toddlers than in adluts. To help avoid false negative, doctors will do many tests like DGP IgA and IgG, tTG IgA and IgG, EMA IgA, and sometimes AGA IgA and IgG. You would want the control test of total serum IgA run as well.  When you get her results, bring them to us and we might be able to help you with the info.

Why can everyone else in our house have gluten but her?

She was just unlucky. Those with celiac disease have a genetic component that predisposes them to autoimmune diseases, and that could be found in others in your family. If you have family wth hypothyroidism, rheumatoid arthritis, lupus or diabetes, that's the genetic component.

 

And celiac disease can develop at any time of life so even if no one else has it now, there is a chance they could develop it... or already have but are not displaying obvious symptoms. It would be a good idea to get everybody tested if she has celiac disease.

should the rest of the family be tested? 

Yes. If they are eating gluten, they should be retested every couple of years or as soon as symptoms appear.

Is there nutritionists that specialize with gluten allergies?

There actually is no such thing (that we know of) as a gluten allergy. Poeple can be allergic to wheat or barley, but not the gluten. A gluten sensitivity affects the IgA and IgG parts of the immune system. An allergy is IgE based.

 

And no, I do not know of any nutritional specialist who could help with that... To be honest, most people around here have found that a nutritionist's knowledge of celiac disease is often less than their own.

What is the next step? 

Waiting for the results. Even if the results are negative, you might want to consider a gluten-free diet for her. Give it a good 6 month trial before judging it's effectiveness OR have her eat gluten for a good 8-12 weeks and redo the tests. It sounds like she was not eating enough gluten for an accurate test result.  :(

Where is the best place to start researching and finding resources? 

Here is good. I really liked Dr Green's book. The library has a lot on celiac disease and gluten-free eating - it's quite a "trendy" disease right now.  LOL  :P  :rolleyes:

What if my husband and I are celiac also and have been eating gluten this long. What kind of damage have we done to our bodies? 

Hopefully none. Some end up with other autoimmune diseases, joint issues or nerve problems.  Long term damage is not really the norm, I think.

What kind of damage be caused if she continues to eat gluten? 

Failure to thrive, pain, bloating, headaches, nausea, diarrhea, constipation, short stature, fatigue, rashes, intestinal villi blunting, other autoimmune diseases, anemia, nutritional deficiencies, ataxia, cognitive issues, ADHD like symptoms.... Most of these are reversible with the gluten-free diet but some of us who were misdiagnosed for a few decades have symptoms that have stayed. The faster a celiac is off gluten, the better.

 

Best wishes.


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