Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Not Celiac Despite Positive Test?
0

9 posts in this topic

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?

0

Share this post


Link to post
Share on other sites


Ads by Google:

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!!

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.nih.gov/pubmed/20170845

http://www.ncbi.nlm.nih.gov/pubmed/21796607

0

Share this post


Link to post
Share on other sites




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.nih.gov/pubmed/20170845

http://www.ncbi.nlm.nih.gov/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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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 :)

0

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,091
    • Total Posts
      920,311
  • Topics

  • Posts

    • Thanks for posting this Adrien, it's a great list and I and others will appreciate the effort and the thought behind it. I loved my time in Malaysia and I'm glad I sampled all the food I could whilst I was still on an unrestricted diet. The good thing is that, like you say, some of the nice Malay foods are still ok. As a backpacker I survived on a lot of nasi goreng and laksa, nice to think if I return there I could still do the same Terima kasih!
    • I have posted on here before. DQ2, brother with celiac, DGP iGA was the only mildly elevated test. Was gluten-free so did 6 week challenge last winter. Negative biopsy. I am gluten-free now but do go out to eat. Prior to the challenge my health was good. Since then I have: Chest pain, pain between shoulder blades, periods of shortness of breath, heart palpitations, one instance of a heart arrythmia episode, neck is tender to touch on one side (they kept saying sinuses or TMJ which my dentist vetoed) ear ache, bowels never sink. Numbness and tingling. Blood pressure variations. Could be doing chores and feel dizzy and it might be 84/52.  not super low, but not typical for me if I'm running around the house.While other days I am mildly hypertensive. Recently lost 5 lbs in 8 days without trying. Recently electrolytes were low, alkaline phosphatese was low. Ferritin started dropping so started liquid iron 2-3 times per day 4 months ago. Primary watching that, I am not anemic but we are nowhere near iron overload either.  GI doc was a dick. Did not even know DGP replaced older tests and he was very condescending When I begged him for help recently and told me to get a second opinion which is exactly what I plan on doing.  I now have pain in my upper GI area. It is tender to touch. I had my gallbladder out in 97 along with a stone and infection in my bile duct. It hurts in this area. Pancreatic enzymes look fine, liver enzymes fine. Pancreatic ultrasound fine. I will now be doing a EUS Soon to look at bile duct, pancreas and liver.   so a typical day for me is that I might feel fine for a while and then suddenly feel like I'm going to pass out. really dizzy, numbness in odd places, like my body has been hijacked. I will typically eat a bunch of food something high protein and in about an hour or so I start to feel better. However, then my upper stomach starts to hurt in place of the passing out feeling. blood sugars are also normal. After getting the " it must be panic attacks" and condescending looks a million times my primary finally ordered an ultrasound of my sore neck and there is an abnormality in my thyroid which she says looks like possibly Hashti's. Except for one time, all my serum TSH tests were normal. We have more blood work on Monday. As I have not put on any weight and there are other symptoms that are closer to Graves.  Has anyone else had any thyroid issues that followed doing a gluten challenge?  where is your stomach pain? Do you have it above or below your belly button? Mine feels like it's in the pancreas area, like 2-3 inches above the belly button and when I push on it it's tender, but not all the time. sometimes i feel it in my back. 
    • Thanks for sharing with me.  I really appreciate it.  Honestly, after a glutening last summer (still do not know what glutened me), I did not eat out for a year!  The risk was too great as my healing time took 3 months (for symptoms to subside) and six months to regain lost weight.  Our recent vacation to Europe was worth the risk  as we traveled with our entire extended family, but we were extra cautious and ate only at celiac-approved places.  Otherwise, we "dined" at markets or ate the food we brought from home.  Thankfully, we did not get glutened (at least we don't think so!)  
    • I do not struggle with this and I was brought up the same way as you. I don't struggle because for many years off & on we didn't have a bathtub, only showers as well as this being therapy or medicinal for the skin - heck even for the muscles as I age. I figure I've earned my right to luxuriate or medicate with baths any time I've a mind to. My husband saw just how bad my dh got & NEVER begrudges me a nice long soak in the big soaking tub we now have.
    • Hi, No, I do not have celiac  disease. I have an ankylosing spondylitis which is an auto-immune disease provoking an inflammation of the joints. Under the advice and supervision of my doctor and the professor at the hospital I follow a gluten free & casein free diet, which is extremely successful in preventing inflammatory events. And I've been doing so, strictly, for more than 6 years. So I'm not Celiac, but I can tell you that I react strongly every time I take gluten even in small amounts. Even soya sauce, which according to this website has an almost zero dose of gluten, is a lot too much for me. Nevertheless I allow myself to eat food which has been processed in a factory which processes gluten. To conclude, I would say that when you are travelling, especially in a country where celiac disease is scarcely known, you should be twice as careful as when you're going out at home. In the end you can never guarantee that the cook has cleaned his pan after using soya sauce and so on... You can only bet
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,121
    • Most Online
      1,763

    Newest Member
    Sambud
    Joined