Diagnosed today and still don't understand!

[Steph0903]

Hi everyone! So a short-ish back story- in 2010 I went from being the healthiest I have ever been to the next day feeling like I had the flu. It was as if a light switched was flipped and it never went away. I spent all of 2010 sure I was dying- I was 25 years old and so freaked out. I went to several doctors who all said I was perfectly healthy. We moved in 2011 and I went to 3 more Doctors. One was a new GP who suggested it could be fibromyalgia. I went to another GP to confirm and will never ever forget that day. He told me that I was "fat" (I had gained 20 lbs. from being unable to run due to constant injuries on top of joint pain) and needed to decide if I wanted to be one of those "chronic people who spend there lives feeling sorry for themselves" and "pretending to be sick". Plus "fibromyalgia isn't a real disorder and it's all in my head" I left SOBBING. I couldn't even drive by his practice without tearing up. I have never felt so belittled in my life. I didn't stop though and in 2012 went to a Rheumatologist who said I had early arthritis and fibromyalgia. The meds helped me to live a semi normal life and helped to fight through the pain. In 2014 I went to a Gastroenterologist for the unbearable stomach cramps and bathroom issues. He did an endoscope and colonoscopy- I was told my esophagus was damaged and put on Dexilant. He also said I had IBS and sent me away. I started to think I was crazy, as did my family. My parents, sisters, my husband, all of them thought I was just being dramatic and just had a low pain tolerance. Because there was NO way I could be sick all the time. Even though my mom has the bathroom issues and joint pain that began in her mid twenties too but her's was never as severe as mine and she had given up long ago on getting an actual diagnosis- I was constantly reminded that she had those issues too and she still did "this and that and it's not an excuse you're just being lazy" . We moved again (we move for my hubby's work), this time to California and I had to get all new doctors. I lucked out by getting a psychiatrist who although expensive was well worth it. She listened and having a long background in other areas of medicine felt that something was wrong and was determined to figure it out. She ran a bunch of tests- a lot of inflammation markers which were all off the charts, a reticulocyte count that was crazy high, and finally the standard CBC had started to show issues. I had a high WBC, RBC, Platelets, and several others were off. My vitamin D was a measly 4 . 1  (the lowest she had ever seen) and my B-12 was low at 170. She got me into an autoimmune specialist who instantly suspected celiac disease. A month later all tests are back and it is Celiac. I feel like writing all of my previous Doc's to prove I  wasn't crazy!!! Even though I now have a diagnosis, I'm still confused as to how it's causing this myriad of symptoms! Within the last few months all cervical lymph nodes and glands have become enlarged, my liver is also very enlarged and causing me not to be able to breathe well laying down. I have drenching night sweats and wake up every night choking on acid I've thrown up (it takes 30 minutes of coughing to bring it all up and finally be able to go back to sleep) not to mention hematuria. Can one disorder cause ALL of that? Add on my 10 years of Infertility  and I'm just exhausted. I just don't know what to do. Will eliminating Gluten really solve all of my problems? More importantly today I realized that Gluten is in EVERYTHING!!!!  Agh!!

[cyclinglady]

Welcome!  

At least you know what the source of your illness is....celiac disease.  Now you have some validation.  Feel free to write a letter to your old doctors.  Be nice.  Maybe you'll save someone else from the diagnostic hell you've been through.

Okay. There's a grieving period.  That's normal.  We've all been there.  Now the faster you go gluten free, the better you will feel.  It will not be immediate, but slowly you will get well.  It took you time to get really sick and time to heal.  And...it does and can cause all the problems you mentioned!  celiac disease affects so many areas of the body and not just the GI!  

Read. Read. Read all that you can about celiac disease and the diet.  Start with our Newbie 101 thread located at the top of the "Coping" section of the forum.  It contains lots of common sense advice.  Celiac.com has several articles on the main page that will help as well.  

Gluten is everywhere and you need to figure out how to avoid it.  Cross contamination is real!  Bet your doctor just sent you on your way with a list of gluten-free restaurants!  Ha!  

celiac disease is genetic.  So, your Mom should be tested.  All first-degree relatives should be tested even if they are symptom free.  Yes, there are silent celiacs!!

Hang in there!  

 

[GFinDC]

Hi Steph,

Yes, celiac disease can cause a myriad of symptoms and damage to the body,  Have you completed all celiac disease testing?  Usually they do the blood antibodies test first and then do an endoscopy.   You shouldn't go gluten-free until all testing is completed.

Gluten is in many processed foods.  But if you stick with whole foods it is not hard to avoid gluten.  Getting used to eating gluten-free may take some time, as we need to adjust our preferences in diet.  But there are many foods that are naturally gluten-free.  Gluten is the protein found in wheat, rye and barley.  Some celiac disease organizations recommend avoiding oats also for the first 18 months of the gluten-free diet.

Celiac disease impairs the ability of the body to absorb nutrients (including vitamins).  That can make it hard for the body to maintain itself and heal/repair damage.  So celiac can easily impact any part of the body.

Sardines, tuna, mackeral and salmon have good amounts of vitamin D in them.  There are supplements available also, but not all are good.  You can check them at the labdoor website.  Nature Made is a good one and not expensive.  Internal damage from celiac can cause liver issues.  Those will probably clear up after being on the gluten-free diet a while.

Recovery from celiac can take  months, and can be a rocky road.  The more you stick with whole foods and avoid cross-contamination issues the sooner you will heal IMHO.

You may find that dairy causes problems for your digestion at first.  But it make stop being a problem after you have healed up some.

welcome to the forum!

[cyclinglady]

9 minutes ago, GFinDC said:

Hi Steph,

Yes, celiac disease can cause a myriad of symptoms and damage to the body,  Have you completed all celiac disease testing?  Usually they do the blood antibodies test first and then do an endoscopy.   You shouldn't go gluten-free until all testing is completed.

Gluten is in many processed foods.  But if you stick with whole foods it is not hard to avoid gluten.  Getting used to eating gluten-free may take some time, as we need to adjust our preferences in diet.  But there are many foods that are naturally gluten-free.  Gluten is the protein found in wheat, rye and barley.  Some celiac disease organizations recommend avoiding oats also for the first 18 months of the gluten-free diet.

Celiac disease impairs the ability of the body to absorb nutrients (including vitamins).  That can make it hard for the body to maintain itself and heal/repair damage.  So celiac can easily impact any part of the body.

Sardines, tuna, mackeral and salmon have good amounts of vitamin D in them.  There are supplements available also, but not all are good.  You can check them at the labdoor website.  Nature Made is a good one and not expensive.  Internal damage from celiac can cause liver issues.  Those will probably clear up after being on the gluten-free diet a while.

Recovery from celiac can take  months, and can be a rocky road.  The more you stick with whole foods and avoid cross-contamination issues the sooner you will heal IMHO.

You may find that dairy causes problems for your digestion at first.  But it make stop being a problem after you have healed up some.

welcome to the forum!

Excellent point, GFinDC!!! I just assumed that Steph had the endoscopy and not just the antibodies tests.  

 

[Zodi1993]

Hi Steph, 

My daughter was diagnosed almost 3 years ago at 19. She is allergic to wheat, shrimp, yeast and sesame seeds. Her acid is off the charts and she had an endoscopy done was diagnosed with EoE. She has had allergies since she was a baby but over the years it has gotten so much worse. Her allergist suggested removing milk from her diet to see if that helped with her acid which often wakes her up in the middle of the night. She also coughs and vomits until the acid is gone. I would  highly recommend staying true to gluten-free eating as that is helped her gain her life back and besides the occasional acid flare up she is doing much better. The anxiety is always there but getting that diagnosis was like a gift from God. You aren't crazy and you are not alone. Just focus on eating natural foods and cooking with simply ingredients. Seek out a registered dietician who specializes in celiac disease as they can help you with food planning. It won't happen overnight but overtime you and your Celiac disease will be bff's. 

Welcome to the forum.

ps .. read read read labels & always ask questions