Celiac - Not yet diagnosed but feel like I'm dying.

[Dylan C]

So i am undiagnosed and have been having severe problems for about 9 months. Ive had stomach problems my whole life. i had a small part of my bowel removed when i was a newborn and had a colostomy bag for 6 months but recovered. I was always active as a child and teen but still had problems, but nothing like this. So now I'm 21 and one day i got really sick in a car and it all started from there! Got very dizzy and wanted to puke. But then i started to have abdominal pain, bloating and bad chest pain. I thought it was a bug and let it pass but it went on for weeks. Then i got constipation and started getting very fatigue and weak. Could barley got to work. One day at work i started having suck bad lower abdominal cramps that they wheeled me out on a cart because i could not walk. I went to the er that night after they went away but since then i have had a lot of symptoms. Mostly lower abdominal pain around my pelvis.( By the way I'm a 22 year old male) . But i have been having bad fatigue, arthritis in my fingers when i wake up, severe abdominal pain that only goes away on occasions, testicular tenderness mostly when I'm constipated, severe stress mostly because of my sickness, bad mouth ulcers, and I'm sure there is a lot of symptoms I'm missing but i have been to doctors and even had a colonoscopy which came back good but I've never been tested for celiac or crohns that i know of. Sometimes i really feel like i dying, the depression had led me to hate everything. I can't really enjoy my wife and kids anymore, can't go out anywhere and have fun because I'm always sick. Im going to see a new family doctor this thursday and try to get some test ran but does anybody have symptoms like me and does this sound like celiac? Help me please i just want my life back. Also i have recently gotten itchy bumps on my hands, wrists and inner forearms and on the right side of my neck( kinda like bug bites all over).

[SLLRunner]

Welcome, @Dylan C.

I am sorry you are not feeling well. There are over 300 symptoms of celiac, but with what you describe I'm surprised you have not been tested for that or chrons, especially as a child. When you go to the new doctor, be proactive and specifically tell them you want a referral to a GI and that you want to be tested for celiac and chrons.

Be sure to continue eating gluten until all testing is complete. 

[cristiana]

Hi Dylan

I just wanted to join SLLRunner in welcoming you to the forum and yes, do ask to be tested for Celiac and Chrons.

My nutritionalist told me that celiac disease is a great mimicker of many illnesses which I think must make a doctor's job all the harder when it comes to diagnosis.  For many of us it took us  a long time to get a diagnosis - for about eight years before my own diagnosis I had ulcers,  odd migraines and hallucinations on waking, anxiety, elevated blood protein but no obvious cause for it, anemia, numb hands and arms in the mornings, and eventually the abdominal pain and severe diarrhea. It was all scary stuff but  it was only when I got the last two symptoms, for six weeks, that I was tested for celiac disease (for the protocol here in the UK is that if you have a new gastric symptom for more than six weeks you should have further investigations).  I still wonder if I hadn't had that gastric pain and diarrhea whether my doctors would have even thought it was celiac related?

After all you have been through it is not surprising that you are feeling depressed.  A lot of people feel very depressed and anxious before their diagnosis.  You are doing the right thing seeing a new doctor, and hopefully you are just around the corner from getting some long awaited answers.  

Keep us posted.  You will find  some great advice here and support during your journey.  All the very best.

[Ntf2001]

Sorry to hear you are in pain! If it makes you feel any better I am going through it too.  I'm a 25 yo female. It's been 5 months since symptoms,  issues my whole life. I'm pretty sure my primary doctor thinks I'm crazy.... 

Think of the positive.  You can't let your symptoms (even though they can be debilitating) rule your life.  Set little goals for the day - a 10 min walk or watch a show with your kids. Small steps.. It will get better

[Sugarcube]

You mention that you might have had a stomach bug at some stage?  So in addition to celiac, I would also suggest testing for giardia / other infections.

My Giardia had caused many of the symptoms (abdominal pain, nausea, constipation, loss of appetite, fatigue etc) that you mention.  Giardia can become chronic and may not clear itself without antibiotic treatment.

[Awol cast iron stomach]

I am still currently on the path of diagnosis too. We are not dying just have triggered the immune system into hypersensitivity even to our own self. You are not alone and I wish you a quick recovery and better health.

I'll share my story.  I have had issues all my life. I was constipated my whole life and had several issues over the years that someone should have questioned celiac all on the 300 list but I was not the typical original textbook type. I was however diagnosed IBS in my early 20s and told I had to figure out what I could and could not eat. Yep then sent on my way. Still on that mission. I actually went gluten-free three and a half years ago as the snowball of symptoms got worse. I know we are not supposed to go gluten-free without testing but I was done with Dr's. I complained of more issues and my wonderful husband in lay terms said bread is bad for you. I see it when I look at you- just stop bread. I did and in the first two weeks I knew he was right and IBS was wrong. I was wheat allergy, NCGS, or Celiac. I didn't care which one I went gluten-free . Overall things were fantastic then 3 1/2 years into my new found pain free regular bowel life I got glutened 2x in the same month. I still have not recovered from restaurant/ catered party food. I emailed and called ahead to state gluten-free food needed etc my hostess' both knew i ate gluten-free. It hit me worse than before when I was still eating gluten. I had all my old symptoms and then some too many to list. this time New for me elbow joint pain was off the charts I had no comfortable position for my arms where my elbows did not hurt got 2 months. Then I knew I was celiac. I am finally seeing someone who might actually get it right this time. I have discovered keeping my newest food diary I can't have casein or coffee cross reactive molecularly I believe in my case. I refuse to eat gluten for testing I told them if they ask/make me I will lie. Not sure what they will say next, I have 2 more upcoming appointments. I am on this path only for my kids sake. I know -that's what is most important. All DR' s before the three most recent I crossed path with missed it, some members of my extended family did not believe me and constantly tried to get me to eat gluten because self diagnosing is not respected by them. Only my husband and cousin believe me. My husband can tell by just knowing and seeing me. My cousin is celiac I have not seen her in a few years and did not know the details of her symptoms/ diagnosis. She said I didn't know you were having problems go to message boards or social media the symptoms you described are there. So here I am on the path with you. To our health and well being.

[Dylan C]

Thankyou everyone for the comments. I hope all of you are well or on the right path! But one of my concerns is that I've not noticed that gluten make me sick. And this week I have felt pretty good. Just kinda out of energy but no pain. But I haven't felt my normal symptoms since I got this rash on my hands, wrists and neck. It's itches but it's weird that I haven't had pain. Did any of you have your good weeks? .. Oh and this isn't the first goodness I've had, I get one about every 2 months. 

[Jmg]

 

  But one of my concerns is that I've not noticed that gluten make me sick.

Neither did I for many, many years. It was only after going off it that I realised just how sick I was. A lot of what I'd accepted as normal (for me) turned out to be anything but. Some similar to you, abdominal pains, chest pains, bloating, low energy etc.  Lot's more too. Things which I'd lived with for so long that I no longer thought of them as remarkable. One reason 80% of coeliacs are undiagnosed is that it can present in so many different ways, sometimes with no symptoms at all. 

 

 

  Did any of you have your good weeks? 

Yes, 

Bottom line, don't exclude it till they've tested, it's important to find out what is causing your issues and if you go gluten-free the tests won't be conclusive. After that, even if they exclude celiac, give a gluten-free diet a try, keep a food diary and see if gluten, or dairy etc may be a problem. 

Best of luck!

[Jmg]

 

I am still currently on the path of diagnosis too.

Awol, why not post your comment in a new thread? You can get a lot of support and good advice on this board but I'm worried your post will get lost in Dylan's thread

Best of luck to you also btw! 

[Awol cast iron stomach]

Thank you JMG I will take your advice. I have not felt supported which is why my cousin told me to seek the experts- you. It has been 4 decades of misdiagnosis. Too long.

[cyclinglady]

Dylan,

These are the specific tests for celiac disease.  You should try to ask for them all, if possible.  For a while, the TTG tests were considered the best for screening.  They are very good but do not catch all celiacs (like me).  Funny thing is that the University of Chicago used to recommend the TTG for screening (along with American GI Association).  With their new website re-vamp, they have included all the celiac tests.  Guess they figured that it is not all "one size fits all".  Remember, you only need one positive on the panel for your GI to do further investigation (e.g. endoscopy/biopsies).  

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I wish you well!

[Dylan C]

So I had the celiac blood test yeaturday and also more ford allergy blood tests . And some other tests. Hoping for answers:)

[Jmg]

 

So I had the celiac blood test yeaturday and also more ford allergy blood tests . And some other tests. Hoping for answers:)

Good luck! Remember not to cut gluten just yet, there may be more tests ahead. You could start a food diary though, just note what you eat and how you feel.