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      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.

Please Please Help Me....being The Experts Gps Are Not Always Able To Be......desp For Help With Tests And Diagnosis ?...
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Hi all....I'm desperate for any advice, suggestions and experiences which might help me solve my issues and diagnosis....a very wise bird (she knows who!) suggested posting to ask the advice of expert...you all......

So after several months of being desperately unwell.....main one being complete exhaustion...(couldn't move, function or think..,) and entirely unlike me as I work FT in a demanding and stressful job with a young family......I had some blood tests....

My bloods were all wrong. Low platelets, white cells etc.....

Had more tests inc for celiac disease.....

Thy came back off the scale for TTb IGa as over 300.

But ema Iga negative.

Sent for endoscopy. Endoscopist said def celiac disease with TTG IG off the scale like that.

Back at docs last week as ESP unwell post endoscopy couple of days before....more bloods.

Told today by receptionist B12 too low (161.......) and need it repeated and an appointment with doc. Doc tried to ring later but missed call.

Receptionist said endoscopy was normal as asked result whilst on phone.(bit not disused or confirmed by Gp)

So ...in short....help...where does that leave me....what should I ask for or expect next?

Every single bit of research etc on online says with a TTG IGA like mine it must be celiac disease and I know an endoscopy will not always find damage (4 samples taken).....

Ives been gluten-free for 2 weeks now.,,,,the change is absurd.......(although took until this weekend...). I am starting to have a bit of colour, my eyes look less tired and black underneath...my head is clearing and I actually feel like working....not just sleeping.....(but still tired) BUT it's also made me realise that I've clearly had an upset tummy for as long as I can remember..... On reflection I've been going to the loo lots and not always good.....now that over the last few days ive hardly been at all and different and my tummy just feels still, settled and 'normal'....... Which worryingly makes me realise I'd forgotten what 'normal' was......

So...advice, next steps, help, experiences.....all welcomed.....as if my biopsy IS negative with a TTG IGA that high and also now b12 deficient,,,,,if NOT celiac disease....what else..!!?

Thanks loads experts....,

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I  think you answered  your own  question!  You are  starting to feel better  being  gluten-free......it  does  take  time   for  your  body to heal & make  the  new  changes  you are  now  throwing  at  it... just keep up  with being  gluten-free 100%    24/7  ....you  will  find  health & happiness....

Since  you have  a  demanding  job  I  will  suggest  you take  some  time  & make  yourself  or  buy  some  good  gluten-free  snacks,  cake, cookies  & so on..  so  when  you are  very busy  at  work or play  & find  yourself  starving  you  don't  grab  a  gluten  food  & make  yourself  sick....The  key is  to  always  be  prepared   with  gluten-free..... it  will  save  you a lot  of  stress.....Find  the  local  restaurants  that  serve  gluten-free  if  you plan on  dining out...

Do a  check of  your  kitchen  for  hidden  gluten  ie:  scratched  pots/pans, plastic or  wooden  utensils/ cutting  board.. Change  your  toaster.  Make house  rules  , no  double  dipping into jars ie: condiments, peanut  butter, jelly  jars...

Low  B-12  .. the  range  for  B 12  is  like  300 -950 depending  on the  lab... the best  place to be  is  around  800-900  ... that low  B12  can make  you very tired & stressed.....

and  you  are  so  right  that  people  forget  what normal/ healthy/happy  truly is...we  are  so  busy  that  we  just  keep  treading  along until  we  fall into  weakness...

 

another  suggestion is  to take  digestive  enzymes  & probiotics daily  to help   your intestinal tract....

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Get all copies of your lab reports.  Information given by a receptionist?  That's ridiculous!  In any case, you should always keep good health records.  

 

Check out the newbie thread located under the "Coping" section for ideas and tips on going gluten free.

 

Welcome!  

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Welcome!

 

Yes, you have Celiac.  Negative biopsy results are not uncommon as the inflammation can come and go and be spotty - easily missed.  Next step?  Go 100% gluten free.  No cheating.  Based on your blood work, consider supplements for the nutrients that you're particularly low in (esp. B Vitamins, D, and iron).  Stick to whole, natural foods - especially at first - as opposed to processed foods.  Your body has a lot of healing to do and it needs nutrients, rest, and plenty of water.  As you start to feel better try to get some exercise.

I also agree with the probiotics and digestive enzymes suggestion.  Very important and very helpful.

 

And congrats on starting to feel better so soon!

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    • Good advice Ennis!  I would add baking and freezing some gluten-free cupcakes to have on hand, so that she is never left out.  Be sure to read our Newbie 101 tips under the coping section of the forum.  Cross contamination is a big issue,  If the house is not gluten free, make sure everyone is in board with kitchen procedures.   Hopefully, your GI talked about the fact that this AI issue is genetic.   Get tested (and your TD1 child).  TD1 is strongly linked to celiac disease.  About 10% of TD1's develop celiac disease and vice versa.  Get tested even if you do not display any symptoms.    http://www.cureceliacdisease.org/screening/ https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/
    • What does weak mean?  Like you squat down and and you can not get back up?  Or are you fatigued?  When you said blood panel, was your thyroid tested?  Antibodies for thyroid should be checked if you have celiac.  So many of us have thyroid issues.  
    • We are not doctors, but based on the results you provided, you tested negative on the celiac screening test.  You could ask for the entire celiac blood panel to help rule out celiac disease.  The other IgA that was high?  It normally is given as a control test for the TTG IgA test (meaning if the celiac test results are valid).  In your case, the TTG IgA test works.  Outside of celiac disease, you might have some infection.  Discuss this with your doctor as he has access to your entire medical file.  I would not worry about it though over the weekend!  
    • See: http://www.cureceliacdisease.org/faq/can-a-skin-biopsy-for-dermatitis-herpetiformis-dh-confirm-celiac-disease-or-is-an-endoscopy-still-needed/ Take a copy of that with you or mail it to the doc. How many endoscopic biopsies did they take? Those with dh tend to have patchier damage than "normal" celiacs.
    • Ironictruth, I think that is a very insightful thought. since different antibodies present for different body systems all the ways gluten affects the body is still not well understood. Here is a case of presumably someone who had the gut damage of a celiac but also had neurological damage. http://www.nature.com/nrneurol/journal/v3/n10/full/ncpneuro0631.html entitled "A case of celiac disease mimicking amyotrophic lateral sclerosis" so it has happened in the literal but since this is not well understood people don't make the connection today. I would also point you to this hindawi article on the "Lesson's learned from Pellagra" but I am afraid we haven' learn't yet. https://www.hindawi.com/journals/cggr/2012/302875/ notice specially the 2.1 section clinical feature of pellagra and all the neurological symptom's once associated with a Pellagra patient. quoting "The neurological manifestation did not stop there because other degenerative conditions, such as an amyotrophic lateral sclerosis-like picture, were described, with fasciculation of the tongue and upper and lower motor neuron signs. Cerebellar syndromes occurred and vertigo was frequent. Headaches, sensory and pain syndromes, epilepsy, and involuntary movements were noted as well as sleep disturbances. Cord lesions were also seen, as was optic atrophy, so there were multiple sclerosis (MS), like variants." which tells me doctor's don't recognize pellagra today when they see it because they haven't seen it in 75+ years. ***this is not medical advice but read the hindawi journal on lesson's learned and I think you will see yourself in their many descriptions of all the way Pellagra presents itself to doctor's and patients still suffering today and you can see why it (like celiac) is hard to pin down today because it presents in so many ways it can be soo overwhelming and since vitamins are not a focus anymore today (especially b-vitamins) that today I believe we are doomed to repeat history's lessons unless the current generation learns again all the ways pellagra presents itself today. good luck on your continued journey. posterboy by the grace of God,  
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