• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Should My Daughter Get More Testing?
0

8 posts in this topic

My daughter was tested through Enterolab and got a low positive result of 11. A previous saliva test was negative. She has never had any intestinal symptoms. She has had severe insomnia for two years and the doctor that we are currently seeing thought it could be related to gluten intolerance. She has been gluten free since October and has seen no improvement. At first this doctor thought that she had some neurological symptoms but we went to a neurologist who did a very thorough examination and she said that my daughter was fine. The only other symptoms my daughter had was swelling in her knees and a slightly positive ANA test. We went to a rheumatologist for further testing and everything came back negative. He felt that the ANA was a false positive. It also turns out that her knee pain and swelling is patelofemoral syndrome and is structural rather than rheumatologic in nature.

I'm now debating whether or not I should keep her gluten free since she has had no improvement and is miserable on the diet and also what testing if any I should have done for her.

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


At this point your options for further testing are limited. Did the Enterolab testing include the genetic testing to see if she has a genetic predisposition to celiac disease/gluten intolerance? While this won't give you a diagnosis it could help knowing whether or not she has one of the predisposing genes. Your doctor can also order a serum genetic test. All other celiac testing would mean having her back on gluten for three months to allow time for the antibodies to build up and for possible damage to the small intestine diagnosable by biopsy. Since you are considering reintroducing gluten to her diet anyway, perhaps this is the way to go. Just a word of caution: there are frequent false negatives on both of these tests, and if she does have an intolerance it could be non-celiac gluten intolerance which would not show up on the testing anyway. It is all so confusing, isn't it?

As for her neurological symptoms, most neurologists will not find anything on neurological examination, if the patient is celiac. Many posters here have spent years trying to get neurological symptoms diagnosed, and about the only way this seems to happen is when an MRI of the brain shows Unidentified Bright Objects (UBO's). Ravenwoodglass is one of the posters who had severe neurological symptoms and no diagnosis for many years.

Doctors seem to often dismiss positive tests as an anomaly, like your daughter's ANA test. You could follow up further with this test. There are subsets of this test that can be run to define what autoimmune condition exists (the doctor would say, if any), and you can find information about these here: http://arthritis.about.com/od/diagnostic/a/ana.htm. Whether or not you could convince a doctor to run them is another story.

With that, I am afraid I am out of ideas. Someone else might have further help.

0

Share this post


Link to post
Share on other sites

hi,I have some questions....

what were the neurological sypmtoms the doctor thought he was seeing? Was/is there anything else going on with your daughter besides the insomnia? And how old is your daughter?

0

Share this post


Link to post
Share on other sites

hi,I have some questions....

what were the neurological sypmtoms the doctor thought he was seeing? Was/is there anything else going on with your daughter besides the insomnia? And how old is your daughter?

She will be 15 next month. She has had severe insomnia for 2 years. We have gone to several specialists and no one can figure out the cause. Our current doctor is wonderful but so far my daughter hasn't had an improvement on the gluten free diet. She seems to tire easy, has trouble concentrating and is sometimes sensitive to light. She also sometimes has trouble tracking her eyes. The doctor felt that these were neurologic symptoms related to the gluten. On the other hand, it could be due to the fact that she is so tired. She is very sleep deprived. Other than that her only other symptom was that out of the blue her knees started to swell and were painful. We thought that perhaps it was an autoimmune reaction and that is why we went to the rheumatologist. Her initial ANA test came back slightly positive but further testing was all negative. The rheumatologist said that it was a structural problem with her knee not an immune reaction.

0

Share this post


Link to post
Share on other sites

Have you made sure she has no nutritional defiencies? i.e. vitamin B 12 defiency can cause nuerologic problems.

I would suggest she have some further tests with a sleep study. My nephew was just diagnosed with 2 sleep disorders. He has suffered for the last 5 years until he was just diagnosed weeks ago.

Just my thoughts.... :)

0

Share this post


Link to post
Share on other sites
Ads by Google:


Have you made sure she has no nutritional defiencies? i.e. vitamin B 12 defiency can cause nuerologic problems.

I would suggest she have some further tests with a sleep study. My nephew was just diagnosed with 2 sleep disorders. He has suffered for the last 5 years until he was just diagnosed weeks ago.

Just my thoughts.... :)

Yes, she already had a sleep study done last May but we are actually going to another sleep specialist tomorrow. This will be about the 10th specialist or doctor that we have seen in the past year. She is on numerous supplements: B12, Vitamin D and several other things. I'm actually hoping that they do another sleep study.

I'm just really starting to doubt that she is gluten intolerant since her test result was so borderline and she has had no improvement 5 months.

0

Share this post


Link to post
Share on other sites

My test results were all negative. That doesn't change the fact that 15 minutes after I eat some it makes me sick, sick, sick!

Have you ruled out any other food intloerance?

0

Share this post


Link to post
Share on other sites

My test results were all negative. That doesn't change the fact that 15 minutes after I eat some it makes me sick, sick, sick!

Have you ruled out any other food intloerance?

She was tested for milk allergy and that was negative. The thing is that she has absolutely no reaction to any food. She feels fine eating foods with gluten in it.

0

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
      106,792
    • Total Posts
      932,460
  • Member Statistics

    • Total Members
      64,273
    • Most Online
      3,093

    Newest Member
    midwayliz
    Joined
  • Popular Now

  • Topics

  • Posts

    • I used to worry I was having a heart attack. The symptoms, a pressing, intense chest pain on left side of chest lasting several minutes sometimes. I went through extensive cardio tests and when they turned up negative was told to live with it. I had bouts of it through my life until I went gluten free for entirely different symptoms. Getting rid of those pains was an unexpected but welcome side effect. It's unpleasant and scary but at least if you know that's the case you have an explanation. Don't let that stop you from seeking medical advice if it persists or is different in any way however.  This is, as ever, good advice: Just think about a busy pizza place on a weekend. Flour in the air and on the hands of kitchen staff. Someone phones in an order. Are they 'really' gluten free or just (insert stereotype) hipster posers impressing their friends with their fad diet. Either way no time to change gloves or use different tools. etc etc. It's a high risk environment.  It sucks, but in these first few months particularly you're better errring on the side of caution.   
    • ???? Lundberg do not use oats in ANY of their products. check the grains section http://www.lundberg.com/products/grains/ I guess try lotus if it still bothers you.....you might be like me and all grains/carbs cause some kind of gut issues. I had to go paleo/keto.....thought for years it was just bad gut bacteria but ended up being another AI issues that reacted to carbs.
    • Unfortunately I have a intolerance to oats so Lundberg bothers me. Thanks so much though. 
    • Thank you guys! Great info and I'm researching your suggestions RIGHT now. I am sure I will have questions - I will ask my doc about vitamin deficiency testing and I will NOT do that gluten challenge!
    • Oh wow!  I haven't been here in days because I have been POURING over the most recent SIBO literature!  Have you heard of Dr Nemechek?  https://www.nemechekconsultativemedicine.com/ His approach is very simple and essentially you STOP using probiotics and start taking Inulin.  It is all very fascinating and falling in with what we are seeing with our daughter. In a nutshell he says that the bacteria that has overpopulated is "damaging" the system (second brain).  That they are meant to stay in the colon but start to grow out (for multiple reasons) and expand into areas of the intestines that should be populated by other area specific bacteria.  They slowly take over and expand out further.  Probiotics feed EVERYTHING and make the SIBO worse and Antibiotics kills EVERYTHING and does nothing to solve the problem either.  There is one antibiotic - Rifaximin that stays in the colon and does not permeate its walls.  Other than that he suggests that you FEED the good bacteria and allow them to thrive and naturally win back the territory.  Inulin is the food that they eat and taking Inulin (Chickory root fibre) will nourish the healthy bacteria.  3 months ago we stripped away Gluten and dairy and saw HUGE results and then lost them.  We also introduced a very high quality multi-strain probiotic.  Dr Nemechek says that the fact that some people see gains when they go gluten-free/DF because they essentially "starve" the bad bacteria and there is a bit of a dying off.  But it is not fixing the core issue and often you can see food intolerances and symtoms worsen even though you are still gluten-free/DF.  This is EXACTLY the dynamic we are seeing with our daughter.  She is eating AIR but is still in pain and now her Sensory issues seem worse than ever (thanks to the probiotic maybe)? He also says that the healthy bacteria secrete an acidic compound that kills off the bad bacteria which also explains why some people feel better when they consume ACV. I find the entire thing fascinating!  
  • Upcoming Events