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Not Celiac Despite Positive Test?


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8 replies to this topic

#1 WhenDee

 
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Posted 22 November 2011 - 10:53 PM

This is not about me, but rather the "friend of a friend". Unfortunately I don't have much more information than what I give you here.

A young teenaged boy who was formerly very athletic developed severe neurological problems. Now he has to use crutches to walk.

He has been tested for everything under the sun. The only thing that came back positive was ONE marker for Celiac's.

A second doctor told his parents that it didn't matter, not to worry about gluten, that it was something else and they would keep searching. They still have no answers at this time.

What I'm wondering is - I had assumed that any Celiac's markers being positive meant you DID have it. I'm quite worried that one really ignorant doctor could ruin this young man's life. I wish I knew which blood marker had been positive, but unfortunately I don't know that much.

Can some of you more experienced chime in? Is it possible to have a positive marker and not have Celiac's? Or should I pass along how dangerous this is, and that they should seek another opinion?
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#2 mushroom

 
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Posted 22 November 2011 - 11:38 PM

Without knowing which test it was (and usually doctors perform only tests that they "know" to be celiac markers) I would say one positive result warrants a trial of the gluten free diet. You have absolutely nothing to lose and a whole life to gain. Go fo it!!
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

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#3 Roda

 
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Posted 23 November 2011 - 02:46 AM

Tell them to get a second opinion and retested with the whole celiac panel!!! It would be a shame to see this kid's life go down hill unecessarily by still eating gluten.
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Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#4 sandsurfgirl

 
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Posted 23 November 2011 - 09:51 AM

I know some people who were extremely ill who only had one marker for celiac come back positive including myself. After going gluten free our lives changed dramatically. He MUST go gluten free to see if it changes him. That poor kid!

That doctor is horrible for doing that to the kid. He has a marker for celiac and he is on crutches. Why on earth would a doctor encourage him NOT to try the gluten free diet???? It's not a pill. There are no negative side effects.

Please have his family visit this board.
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Lots of doctors diagnosed me with lots of things including IBS, lactose intolerance, wheat intolerance, and quite a few of them threw up their hands in total confusion.

Had GI symptoms, allergy symptoms and unexplained illness my whole life.

Jan. 2010 Diagnosed celiac at the age of 40.
Ready to get well and get on with my life!

#5 Skylark

 
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Posted 23 November 2011 - 10:56 AM

There is a somewhat unusual neurological form of celiac disease, where the autoimmunity is directed against the nervous system. Only one marker (anti-gliadin) typically comes back positive because the usual celiac panel is looking for gut antibodies. Anti-gliadin is considered a weak marker for classical celiac disease so most doctors would misdiagnose it. You might print these two abstracts for them.

http://www.ncbi.nlm....pubmed/20170845
http://www.ncbi.nlm....pubmed/21796607
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#6 sandsurfgirl

 
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Posted 23 November 2011 - 02:27 PM

There is a somewhat unusual neurological form of celiac disease, where the autoimmunity is directed against the nervous system. Only one marker (anti-gliadin) typically comes back positive because the usual celiac panel is looking for gut antibodies. Anti-gliadin is considered a weak marker for classical celiac disease so most doctors would misdiagnose it. You might print these two abstracts for them.

http://www.ncbi.nlm....pubmed/20170845
http://www.ncbi.nlm....pubmed/21796607




Skylark, when are you going to write a celiac book? You have so much information. Love it!

I don't remember which marker was high for me, but it was triple. My doctor was uncertain but I just knew in my gut that it was the answer. For years I knew there was something going on with wheat so I was gluten light. I didn't eat a ton of breads and pasta, etc. I think if I had been a full boar gluten eater my tests would have come back differently.

My son went mostly gluten free when I did just because I was the one preparing food. When we tested him 6 months later he came up negative on everything. No way was I going to challenge a 6 year old. He made his own choice to go gluten free because he was tired of being sick, tired of throwing up for no reason, tired of tummy pain and nose bleeds. The doc said she thinks he has celiac but his gluten light diet skewed the results.

The testing is tricky at best and downright faulty at worst.
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Lots of doctors diagnosed me with lots of things including IBS, lactose intolerance, wheat intolerance, and quite a few of them threw up their hands in total confusion.

Had GI symptoms, allergy symptoms and unexplained illness my whole life.

Jan. 2010 Diagnosed celiac at the age of 40.
Ready to get well and get on with my life!

#7 Skylark

 
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Posted 23 November 2011 - 04:25 PM

Skylark, when are you going to write a celiac book? You have so much information. Love it!

I've thought of it, but it's a lot of work for something I'm not sure anyone would buy.
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#8 Di2011

 
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Posted 23 November 2011 - 04:55 PM

I've thought of it, but it's a lot of work for something I'm not sure anyone would buy.


I would.

Reliable, laymens language but in-depth, technical where necessary. Can't get much better than that :)
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#9 Takala

 
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Posted 23 November 2011 - 07:51 PM

I have the neurological form of side effects from gluten intolerance. Possible to have even no markers or not high enough on a scale and be truly messed up from gluten. Got the holes in the brain to "prove" it.

I was never skinny nor had the chronic wasting nor D. I had some lactose intolerance by the time I was in my thirties. Therefore, it must be something else. Even the arthritis was sero - negative.

Was told more than once "probably M.S." or "probably lupus." And when these tests never panned out, inspite of the obvious damage which they observed earlier, and was available to them on scans, the sonsa***ches had the nerve to suggest "IAIYH." Because that is easier than saying "I was wrong. I do not know. You are correct to avoid grains."

If I had not had a.p. science classes in jr and senior high, which gave me a basis for being inquisitive AND how to experiment (...upon myself), I'd probably be dead by now, if I had been medically conventionally treated.

Tell these people I don't use a cane anymore, unless I'm hiking downhill on a difficult trail, and I have regained most of the feeling in my hands, legs, and feet. (some permanent nerve damage from the c spine problem). I have regained my color vision in the one eye, and my night vision. I'm only dizzy when I get cross contaminated. And I don't have any blood tests to show for it.

There are certain physical characteristics we tend to have, like very pale skin, shorter waisted, longer legged, crooked teeth before braces, dryer skin. Certain ethnic heritages from different parts of the world (Irish English, in the new world, Native American) that live closer to the Arctic circle tended to have higher incidences of MS, celiac, auto immune diseases such as diabetes. Anyone can go to wikipedia and look up the HLA DQ2 and HLA DQ8 articles and see if anything rings a bell. Family history is another clue, if parents/grandparents had certain sicknesses that are related to celiac. I am pretty sure I am third generation, and got it (tendency) from both sides of the family tree.

You only let a bad doctor ruin your life, if you let them tell you to do the wrong thing. Ignoring a positive test result is one of those wrong things.
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