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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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    • Consider using our forum private message feature to protect privacy....just in case you all did not know 😉 !
    • Hi Beachgrl, It won't hurt anything to go gluten-free now, except the possibility of getting a diagnosis of celiac disease.  When i went gluten-free, it seemed like the initial changes were spread over about 6 weeks.  I had gut spasms for that time.  And other changes, all for the better.  Initial recovery from celiac damage can take up to 18 months, so it can be a slow thing.  Some people get better much faster of course, because we are all individuals and not identical. Going gluten-free for celiac disease is a lifetime commitment though, and some people have a hard time doing that without a diagnosis.  Even minor amounts of gluten can cause us to react, so it is best to eat a very simple diet of whole foods at first.  Avoid dairy and processed foods.  I hope it works out for you.  I know some people with Crohns disease eat gluten-free and find it helps them.  Gluten is a tough thing to digest for all people, but most don't have an immune reaction to it like celiacs do.  
    • Honestly, I would not trust the school to provide a gluten-free meal except for fruit, salads, veggies, etc. I sub in a school cafeteria and I swear everything is breaded or on bread. Utensils are shared. They're very clean but unless you have a very knowledgeable person in there, I just wouldn't chance it. I found a slim Jim type snack that says gluten-free on it. If you want to give me your email or FB account, I can send you some very valuable info on 504's though. They carry the student right through college. I kept a copy of what a friend wrote about her daughter being in a sorority and just how the 504 helped immensely. But, I would definitely get one and still be prepared to pack a lunch. All our meals are delivered frozen and we just hear them up. If your school actually fixes food, that's different. 
    • Oh, I would suggest providing gluten-free goodies (e.g. Candy) or even a frozen cupcake (kept in the teacher's freezer) in the event of a party.  My daughter's classmate is severely allergic to peanuts.  Her mom did that and Abby was never left out!  😊
    • Hi Nobody, Welcome to the forum!  I noticed you said you have been avoiding wheat products.  That's good, but are you avoiding rye and barley also?  Wheat, rye, and barley are the 3 grains that cause reactions in celiac patients.  About 10% also react to oats. If you haven't had the full celiac antibodies test panel, it might be worthwhile getting that done now.  The ttg is just a basic test and is generally followed up by an endoscopy or the full celiac panel. I wouldn't worry a lot about getting cancer.  That doesn't happen often. It is possible some of the other grains you might be eating are contaminated.  A group did a test on several off the shelf products a few years ago that would not normally be thought of as having gluten and found some actually did have low levels of gluten.  Things like corn meal for example.    
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