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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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    • Hi Sarah, I agree with cyclinglady, your doctor doesn't seem to understand celiac disease.   Maybe you can check on Google for a local celiac support group.  Ask them if they know of any good celiac doctors in your area. The usual testing process for celiac is 12 weeks of eating gluten and then a blood test followed by an endoscopy later.  You are right, if you weren't eating gluten before the test it was not reliable. Welcome to the forum!  
    • Hi lolobaggins, Yes, it is not unusual to have symptoms that come and go after going gluten-free.  Edema (swelling) can also be a symptom of an allergic reaction.  Fatigue is not fun but remember your body is trying to heal a major organ, your gut.  So some rest might be a good idea.  The immune system response is going to keep going for several weeks to several months.  Each little bit of gluten kicks the immune response off again and extends the healing time.  So it's helpful to be very careful with your diet. Meats, vegetable, and nuts are good foods to eat at the beginning.  And whole foods rather than processed foods.  Dairy is often a problem until the villi are healed.  After a few weeks if things are going well you can try to add one new food a week and see how things go.  But take it slow and easy.  The fewer foods/ingredients we are eating the easier it is to identify problem foods. Welcome to the forum!
    • Welcome to the club that you never wanted to join!  (I plagiarized that from someone else here but can't recall who so I can't give credit to them.) Anyway, there is a steep learning curve to being gluten free.  It takes time to learn to read labels.  It takes time to heal (like months to YEARS).  Symptoms can wax or wane.  You just have to keep moving forward.  Give yourself time to heal and do not worry about the gym right now.  It will come back later, I promise (from a gal who cycles, swims, and runs).   Read our Newbie 101 section pinned at the top of the "Coping" section.  It contains valuable tips about cross contamination and hidden sources of gluten.  Read, read, read, the internet from reliable sources (not crazy bloggers).   You will feel better soon.  
    • Ha!    That happens to me all the time!!!!!  It drives me crazy!
    • "Accidentally marked them soy free".  Are you kidding?  That's fraud!  Consumer Reports just issued a huge report this month on supplements.   Yes, everyone thinks they are all "natural" and therefore safe.  Doctors and nurses recommend them all the time, but they can do a lot of damage.  Anyone can start making them in their bathroom and there's literally no regulation.   Geez, it is safer to buy food products (no gluten ingredients listed) from companies like Kraft and ConAgra because they are regulated more!  http://www.consumerreports.org/cro/magazine/2016/09/index.htm What about the probiotics?  Columbia University tested about 20 of them and found that over half had gluten in them.....enough to make celiacs  remain sick. https://www.sciencedaily.com/releases/2015/05/150515083232.htm Think twice about taking supplements.  Make sure you really medically need supplements.  I prefer certified gluten-free if I need to take them and I take nothing right now because all my labs are okay!  You have been on the gluten-free bandwagon for many years (member here for years).  Your doctors should be looking at other things that might be making you sick still.  Something is wrong!   That's my two cents!    
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