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nvsmom

Member Since 12 Jun 2012
Offline Last Active Yesterday, 07:53 PM
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#935388 How Much Can One Person Take? I've Reached My Limit...

Posted by nvsmom on 20 November 2014 - 08:01 PM

:( Oh no. How stressful for you.

 

Is it possible to bring in a bowl yourself (f they have nothing for you) and just transfer the sample to the cup?  I would think they should have bowl there. I remember when I had a 24 hour urine collection test and they gave me a bowl that fit over the toilet but under the seat, so I could go normally and still collect everything.  They should have something, or maybe a medical supply store would have something you could take there?

 

Good luck.  I hope it works out.


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#935217 Elevated Growth Hormone (And Igf-1) - Why?

Posted by nvsmom on 18 November 2014 - 03:08 PM

Good luck!  :)


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#935134 Elevated Growth Hormone (And Igf-1) - Why?

Posted by nvsmom on 17 November 2014 - 02:44 PM

Thanks for those links - bookmarked! Came across a few similar ones last night when Googling thyroid/IGF-1 links. Thanks also for the thyroid testing advice. I know this can be a complicated area in terms of testing and diagnosis, so it's good to have some thoughts on where to begin.

 

I got a letter from the hospital today saying that my IGF-1 levels were "mildly" elevated in the previous blood tests and that the endo has decided to arrange an MRI regardless of the results of the glucose tolerance test, so I guess they're taking no chances, which is reassuring. Re: other pituitary hormones, well, yes and no. The set of blood tests ordered by my GP's surgery in the spring (I'd gone in complaining of worsened hirsutism and growing dependence on those facial oil-absorbing wipes marketed at teenagers) showed high prolactin, though not elevated to the extent that would point straight to a prolactinoma. The prolactin result was the reason for the referral to endocrinology. The hospital ran a new set of blood tests, and by that time my prolactin had gone back down to normal, but was near the high end of the normal range. FSH and LH were normal. Everything else they tested for was also normal (e.g. estrogen, testosterone, etc) apart from mildly high DHEAS.

 

I'm glad nothing is too high for you, but that almost works against you because nothing is as clear cut.

 

I hope that MRI goes well and there is no sign of a pituitary adenoma. Let me know how the OGTT GH suppression test and the MRI goes.  I hope they clear you of any problems and your abnormal labs were just an unexplained blip like mine.


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#935132 Am I Just Nervous

Posted by nvsmom on 17 November 2014 - 02:34 PM

Welcome to the board.  :)

 

The first few weeks after the diagnosis are the hardest. You need to change your way of eating, we don't feel better yet (recovery can take weeks to months to years), and about a third experience withdrawal so they actually feel worse for a couple of weeks before they get better.  You may need to give 100%gluten-free some more time before you see results.

 

That being said, once gluten is out of the picture, some celiacs find that other sensitivities become much more pronounced - its like your body relaxed a bit and now it can complain about the other foods it doesn't like.  Common sensitivities include milk (50% of celiacs are lactose intolerant when diagnosed although some regain the ability to tolerate milk once they've healed), corn, soy, and eggs; also some react to peanuts, nightshades, and sugar and sweeteners throw others off.  You may need to cut out other foods.  It may be temporary (for 6 months to a couple of years) but it could be permanent.  :(  Keeping a food and symptoms journal could help you see the trends.

 

Give it time.  Remember that going gluten-free is not a quick fix.  Some symptoms may improve right away but some symptoms (like arthritis, anxiety, nerve problems, cognitive issues) can take many months or a few years to improve.  Hang in there.


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#934547 Do You Ever Break Down And Eat Gluten Every Once In A While?

Posted by nvsmom on 09 November 2014 - 07:42 PM

I was asymptomatic prior to Dx, so my will power does fail me from time to time. Last week I was at a football game and incredibly hungry. Of course stadium food is the worst so I caved and at a piece of pizza. Then, this past weekend I ate one of my mom's homemade flour tortillas (they are the #1 thing I miss the most).

 

Both times I did wind up having some stomach cramping. I consider myself incredibly fortunate because that's ALL I had. Of course, now, my willpower is in check for the upcoming holiday challenge!

 

 

I have a lot of trouble because I don't really have any symptoms like other people.. I don't have to spend all night in the bathroom or anything. I've been having a bad day today and went to Trader Joe's and saw all their yummy things.. I got my son and husband some bagels that look delicious, and I got some goat cheese with cranberries and crackers for them. I broke down and had about 4 crackers. I'm noticing a little bit of mild nausea, but I'm not sure if that's in my head and I'm just freaking myself out. My test was just one point above normal on the AGA IGA a couple of years ago, and I've had doctors tell me different things, so I think I need to go get retested and maybe an endoscopy, because I've had two doctors tell me that if I don't have massive amounts of diarrhea, not to bother being gluten free. Which means, I need to start eating gluten every day and then go get another test or two.. 

 

It's also tough because my husband just thinks I'm crazy and that I don't need to worry. I was telling him about cross contamination and he thought that was the dumbest thing he's ever heard. He thinks it's just OCD and a fad diet. Makes it tough to stick with it.

 

My immediate symptoms are not severe and consequently I was not diagnosed until I was almost 40, after I developed arthritis, thinning hair, bad skin, fatigue, hashimoto's and a another autoimmune disease that was life threatening. I used to just get a stomach ache sometimes after a meal, and then it became after most meals, and I did not eat a bunch of gluten - I don't even like bread much.  LOL

 

Try to remember that immediate symptoms do not correspond to the damage you are doing to yourself. If you cheat every month or so, you are really hurting yourself in the long run.  Symptoms like anemia, osteoporosis, arthritis and neurological problems will creep up on you until they can't be ignored... and sometimes can't be fixed.  

 

Eating gluten (cheating) every month or two (especially every week) will hurt your health. Eventually you may be like me whose autoantibodies stays elevated over a year after I went gluten-free.  That means my gut was still being attacked even though I had been gluten-free for hundreds of days.  You don't want to get there.  :(

 

Stock up on gluten-free treats.  Have substitutes for when you will be tempted because you know that you will be.  Plan ahead so you don't have any poor me moments and you can.  Set the people in your lives straight about this disease and if they don't believe you, then don't trust them... Or add minute amounts of (cc) tobasco sauce to all of their foods and drinks and see how they like it when THEIR food is contaminated... If you feel vindictive, melt small amounts of laxative into all their foods and see how they do.  LOL ;) JK

 

And if you have kids, cheating sets a really bad example... actually it does for all family and friends.  Why would they take the diet seriously when you don't?  By cheating you are undermining yourself.... Its all bad, darn it.  ;)


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#934075 Halloween Celiac Stereotypes

Posted by nvsmom on 03 November 2014 - 03:03 PM

To me, it seems to be poking fun at the egocentric way of things now a days.  It seems that people want it their way, with a sense of entitlement, and feel that they should be accommodated.  I'm not saying that it isn't great to try to accommodate people but for those people without a food issue, these food problems won't be on their radar; asking to be accommodated in certain places (like trick or treating) would be beyond their level of understanding... so they poke fun back.

 

I'm babbling. This joke seems to be about how people want other people to look after them even when they should be looking out for them selves, its just geared at food issues.... Can you tell I'm a conservative?  LOL  ;)


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#934017 3 Year Old With Positive Blood Panel - Next Steps?

Posted by nvsmom on 02 November 2014 - 05:39 PM

With so many positive tests, I'll go against the grain and say that I think the biopsy is not needed for a diagnosis.  The EMA IgA is over 98% specific to celiac disease, and the other positive tests are almost as specific.  If she is having some symptoms, even if they are mild, I would say a celiac disease diagnosis is a slam dunk.   :(

 

I was diagnosed with just a positive EMA IgA and a positive tTG IgA.  I never did the biopsy. I was sure it was celiac disease.

 

All that being said, if you think a biopsy would be helpful to give you a baseline of damage, then you might want to consider it. Some celiacs can take years for their symptoms to improve after going gluten-free, and some may have repeat biopsies to see waht's going on.  In that case it would be helpful but that really is a small minority.

 

If you do get the biopsy done, she'll  need to be eating gluten in the 2-4 weeks prior to the procedure.  If the biopsy is soon, you should not have her go gluten-free yet.

 

Also, make sure they take at least 6 samples.  Damage caused by celiac disease is missed up to 20% of the time, so if multiple samples are taken the doctor has a better chance of detecting patchy damage.

 

And I would test everyone in the family every two years if they have negative tests and are continuing to eat gluten.  Celiac can develop anytime in life so it is important to retest.  You could also have the household go gluten-free, in which case you won't need to retest anybody until they decide to try gluten again... and that's if they have negative tests.  If it's positive then they are gluten-free for life.

 

Welcome to the board.  :)


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#933450 Blood Test Negative, But Still Sick

Posted by nvsmom on 25 October 2014 - 09:38 AM

IBS is often the diagnosis they give to celiacs or those with non-celiac gluten sensitivity (NCGS) before they have figured out the cause of the pain.  Someone around here used to joke that IBS is a doctor's acronym for "I Be Stumped".  ;)

 

Do you know the ranges for those celiac tests you had run?  The tTG IgG, DGP IgA, and DGP IgG tests look negative but if your range is very small (like 0-1) it could be positive.

 

I would advise you, if you are satisfied all of your celiac testing is done, to try the gluten-free diet for a few months.  You could have NCGS, which is evrey bit as nasty as celiac disease but does not include intestinal damage, so you may need to eat gluten-free.  Celiacs, and those with NCGS, do not always (or even often) feel better immediately after going gluten-free. Some symptoms can take months or years to resolve so giving the gluten-free diet a trial of around 6 months is often the only way to go.  Make sure you are strictly gluten-free. Trace amounts every few weeks is often enough to set people back and hamper their recovery.

 

Best wishes to you.  I hope going gluten-free long term will help you and you'll begin to feel better soon.


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#933423 Want To Know About Anti Gliadin Antibody Test

Posted by nvsmom on 24 October 2014 - 06:07 PM

The AGA (anti-gliadin antibodies) tests are both about 80-95% specific to celiac disease.  A positive result means that there is a 80-95% chance that it is caused by celiac disease.  Look at page 12 of this report for the numbers: http://www.worldgast..._long_FINAL.pdf

Some doctors also believe that the AGA tests can indicate non-celiac gluten sensitivity (NCGS) which is just as nasty, in my opinion, as celiac disease.  I think that account for some of the AGA "false positives" for celiac disease.... but the treatment is the same.

 

The problem with the AGA tests are that they miss so many celiacs.  There are not very sensitive. If the AGA caught you, you're lucky.

 

I'm afraid that joint pain, nervous system and brain issues are often the last symptoms to improve.  I'm two and a half years gluten-free and my joint pain is finally now quite a bit better, but still not better.  I get weeks that can be hard, but it is much better than the months of severe pain that I used to get. I was convince that I had lupus or RA because I was still so bad after being gluten-free over 9 months.  Joint pain can take a long long time to get better.  :(

 

Hang in there.


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#933421 Celiac In Japan And New Symptoms

Posted by nvsmom on 24 October 2014 - 05:36 PM

There are very basic restaurant cards available for free on the web.

Here is the French version:

http://www.celiactra...m/cards/french/

Japanese:

http://www.celiactra...cards/japanese/

Japanese including soy sauce explanation:

http://www.celiactra...ards/japanese2/

 

My reactions to gluten tend to grow when I am repeatedly exposed. I feel worse as time goes on and it can take many weeks to recover.  For me, part of this disease was feeling flike I had a flu so I would not be surprised if what you experienced was a gluten set back... Especially so early into your recovery.

 

You'll need to be more strictly gluten-free in order to get well.  If there are no food choices, you will need to skip the food.  :(  You may need to risk offending some people, or standing out, in order to keep yourself safe. :(

 

I hope you feel better soon.


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#933014 Dealing With The Fatigue And Head Fog?

Posted by nvsmom on 19 October 2014 - 06:12 PM

Yep, coffee.  I used to rely on coffee a lot.... And occasionally that healthy stuff like exercise.

 

I hope you feel better come Monday.


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#932611 Feeling Angry!

Posted by nvsmom on 13 October 2014 - 09:14 AM

I agree with cyclinglady, it usually takes a few days to a few weeks to feel better. Two weeks seems the average for starting to feel well again but quite a few are still fatigued and "off" a month later.

 

I also agree that he should have his own packed food at the base. They've proven that they can mess it up.  It is better to be safe than sorry, so if it is feasible I would pack him food to eat out of school in re-heatable containers.  If having different food is an issue for him you can always get their menu and try to co-ordinate with what they are serving.

 

Hope he is better soon!


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#932500 Is There Medication For Celiac That Allows You To Consume Gluten?

Posted by nvsmom on 11 October 2014 - 12:08 PM

I would look into her medical records.  If she had a positive blood test (tTG IgA, tTG IgG, DGP IgA, DGP IgG, EMA IgA) then she has celiac disease.  If her total serum IgA was low, then her tTG IgA, DGP IgA, and EMA IgA tests will show a false negative and can not be used to diagnose her.  Does she have a positive endoscopic biopsy (at least 6 samples taken)?  She needs to be eating gluten in the 2-3 months prior to testing or the tests could be falsely negative.

 

Genetic testing will just say if she is part of the population which COULD get celiac disease, not if she has celiac disease.

 

Oops, Kareng just posted... ditto everything that she said.  :)


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#932437 Need Advice On Diagnosis

Posted by nvsmom on 10 October 2014 - 07:57 AM

Dr Fasano, one of the leading researchers in celiac disease, states that for a celiac disease diagnosis you should meet 4 of the 5 following criteria:

  1. typical symptoms of celiac disease
  2. positivity of serum celiac disease immunoglobulin, A class autoantibodies at high titer
  3. human leukocyte antigen (HLA)-DQ2 or DQ8 genotypes
  4. celiac enteropathy at the small bowel biopsy
  5. positive response to the gluten-free diet
 

http://www.ncbi.nlm....pubmed/20670718

 

You meet criteria 1,3,4, and 5.  That's celiac disease, even if a doctor won't state that it definitely is (because he's covering his own... um, backside.

 

It really isn't that unusual to have negative tests, especially after going gluten-free. Those tests can easily miss people, and for some reason they just don't work on everyone.  My guess is though, that if you continued to eat gluten, and made yourself really, really sick over months and years, that your tests would be positive eventually.... But you really don't want to, or need to, go there.  

 

You've met the diagnostic criteria. It is time to settle into the gluten-free life, check your nutrients and bones, and get your family to get tested.  :)

 

Welcome to the board.  :)


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#932086 Trying To Figure Out What Is Wrong

Posted by nvsmom on 04 October 2014 - 04:52 PM

Oh yeah. That DGP IgG of yours is well over double the normal limit - that is something to take seriously. The DGP IgG is considered to be one of the most specific (to celiac disease) tests out there. A positive result means you have celiac disease 99-100% of the time.  (This is where I got my stats: http://www.worldgast..._long_FINAL.pdf)  It loos like celiac disease to me too!

 

Low vitamin levels, as well as low cholesterol and triglycerides are common symptoms of celiac disease. My cholesterol and triglycerides were far enough below normal that my doctor is trying (through diet) to raise it some.  LOL

 

I agree with the others that you need to see a GI specialist and eventually go gluten-free.  When you are finally able to go gluten-free (after testing is complete)  make sure you give the diet a few months to help. The first year of recovery is full of ups and downs, and many symptoms may not improve for many months.

 

Welcome to the board.  :)


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