Should I Be Tested?

[Healthsohard]

It's it's been an interesting year to say the least.

My whole life I suffered symptoms of celiac and I'm just now realizing it might all be because of Celiac Disease.

I remember growing up and having crazy bouts of diarrhea at times, but thought it was a bug going around or just didn't sit right with my tummy. In my late teens/early twenties I started developing a rash. The rash would always be on my neck. I thought it was a heat rash and applied cortisone cream and washed with dove mild soap. The rash would come and go and it eventually started appearing on my arm once a year. The last rash was December 2014, and it appeared on my chest. Again, I chalked it up to heat rash. Washed with mild soap and applied cortisone. I've always had headaches and migraines. The diarrhea was still existing on and off. Other than that I felt ok. I'm a pretty active woman.

When I eat a meal, I get so bloated with a food baby. I look 3-4mths pregnant.

Just after my 32nd birthday in July 2014 I was slipped a drug in a club and overdosed. I was taken to the hospital. Ever since then I have not been the same. Seizures started September 2014. They've progressively have gotten worse. My neurologist thought I was having panic attacks and thought it was all in my head. I was put on clonazepam. After being filmed while seizing my new neuro says they're simple partial seizures. I have tingles in hands and feet a lot too.

Within the past month my diarrhea has gotten more frequent. Every few days I'm rushing to a toilet. Two days ago my diarrhea had blood in it.

I'm tired all the time and just feel drained. I never used to feel this way.

I scheduled an appointment for 8/22 with a gi doctor after a friend with celiac suggested I get tested.

What are your thoughts?

I read celiac disease can be triggered due to trauma.

I was also told not to go gluten-free till I've been confirmed Celiac or intolerant.

What test should I ask my dr about? My friend said biopsy but never mentioned any blood test.

I must add my mother was unable to conceive for 8yrs and my oldest sister had infertility issues and conceived twice through ivf. My older sister also has horrible stomach issues but no one in my family that we know of has ever been tested. My father has type 2 diabetes, strokes, dementia and Alzheimer's.

[nvsmom]

Welcome to the board.

 

You've had a tough year.  You are correct in that celiac disease can be triggered by a trauma, but it can also be made worse. It sounds like you may have had it for sometime but it caught up to you after that horrible ordeal someone put you through.  

 

Neuropathy, D, rashes (dermatitis herpetiformis), anxiety, bloating, fatigue, panic attacks, stomach issues, ataxia, and infertility can all be signs of celiac disease.  I would get tested if I was you.  These are the tests you could do, the more the better:

• tTG IgA and tTG igG (anti-tissue transglutaminase)
• DGP IgA and DGP IgG (deaminated gliadin peptide)
• EMA IgA (endomysial antibodies)
• total serum IgA (a control test)
• AGA IgA and AGA IgG (anti-gliadin antibodies) - an older and less reliable test

There's more info on the tests here:

Open Original Shared Link

 

You need to be eating gluten (approximately 1-2 slices of bread per day) in the 2-3 months prior to having blood tests done.  The endoscopic biopsy only require 2-4 weeks of gluten.

 

Good luck with the doctor.

[Healthsohard]

Thank you. I've definitely been eating gluten so no prob on the test. I love bread!

It's super crazy how fast my health has declined over the past year. My neurologist put me on clonazepam. Hasn't helped much. MRI, Cat Scan and heart test all are normal at least.

I had a basic blood panel drawn a few weeks ago during a recent check up. My primary care never called with results so I guess everything was normal. Celiac wasn't on my mind at the time so I never thought to ask. I did however get my blood test emailed to me and I did notice my lymphocytes were under normal range. They read 18.8. Not sure what that means since she never called to discuss the panel.

Honestly, celiac is the only thing that makes to explain all of my crazy symptoms.

[millerb68]

If I were you, I'd definitely be tested. You certainly have a lot of the symptoms, and many that I have as well. You might also research leaky gut, which can cause those symptoms as well. 

 

Keep eating gluten so you can get accurate test results! 

 

Hang in there! 

[Healthsohard]

Just called my primary care. Requested that I be tested for a full celiac panel. Appointment is 8/12. My GI appointment is 8/22. I wanted to get my blood testing done before GI dr sees me. My next neuro appointment is for 9/16. So hopefully I can get some answers soon.

[Healthsohard]

Just got my blood tested for celiac. Should get results in 7 days. My dr also tested my blood for connective tissue disorders.

I've been feeling down on myself the past few days. Two friends just think it's all in my head and I'm suffering from anxiety and depression. My dr, partner, family all agree I'm not. I know something hasn't been right for a year. One friend who does have celiac said she went through the same thing with friends and it was like finding a needle in a haystack to figure out what was wrong. I see my gi dr on the 22nd to discuss getting the biopsy no matter what the blood test say. My dr said that was the most effective test.

I just want answers. Too many symptoms and no patience left. I want to feel better.

[nvsmom]

Most people refuse to believe that comfort food can make some of us sick. If you look around the forum you'll find many people who have had friends, family and doctors tell them that it was all in their head... You're in good company here.

Let us know how the test results go.

[Healthsohard]

Thank you! I will for sure keep everyone updated. Really appreciate the feedback.

[Healthsohard]

Waiting on both results of my celiac blood test and connective tissue disorders test.

Of course till I get a firm diagnosis I know to not stop eating gluten. Well yesterday I had a sub and Brussels Sprouts and saved the rest for dinner. Today I had another sandwich and chips and feel completely off. This is the usual feeling I get before I have a seizure.

I keep having bouts of syncope today. Even if I've been standing up for a few minutes my vision starts to go black and I know to get down to the ground before I'm forced down. I've battled syncope for as long as I can remember. My heart has been checked. That's ok at least. Does anyone else have syncope with celiac?

I'm not dehydrated either. I have felt constipated a bit today even after going to the bathroom.

Sorry for all the questions and concerns. I appreciate any and all feedback.

[GF Lover]

Had syncope before DX.  Went down so hard on my kitchen floor one night I knocked myself out.  Thankfully son was with me...lol   No cause ever found.  Is completely gone now.  I also have Connective Tissue Disease which means you've got issues but they can't pin point it.  Kind of like an IBS dx.  

 

Do you have a biopsy scheduled?  I hope they did the complete panel for Celiac.  

 

Colleen

[Healthsohard]

Not sure if they did a full celiac panel but I requested it. I am going to have the biopsy no matter what the blood results are.

As soon as I blacked out today my labradane puppy came over and laid by my side till I was able to get up. He was very sweet. Usually he barks his head off at me before and during a seizure and tries to bite me. This time he laid by my side.

We have a trainer coming to work with him soon. She trains dogs to be therapy dogs so this will help me out a great deal.

[Healthsohard]

My gi appointment is on August 22nd and I am definitely requesting biopsy. If he won't do it, I'll find someone else.

[GF Lover]

Good that your doing the biopsy too.  Post your blood test results so you know if they did the complete testing.  SO GLAD your pup will be trained for you.  She will give you great comfort, both emotionally and physically.  Question...did they do an occult fecal test?  You need to cover all your bases.

 

Colleen

[Healthsohard]

Not sure about the fecal test. I did have a stool sample early July because the diarrhea was so bad I thought it was food poisoning. No signs of food poisoning were found. Should I post those results?

[Healthsohard]

So far I've only seen blood in my stool once and that was two weeks ago. It looked small pools of blood mixed with diarrhea. It was dark red. Haven't noticed it since but the diarrhea has been on and off. When off I'm constipated.

[GF Lover]

If nothing was found then no need to post.  Fat malabsorption can be found with a stool test but who knows if they were looking for that.  Also have them check your Thyroid function if you haven't already.  I had debilitating migraines too.  I have many less now but still as intense.  Don't get discouraged.  This is a long process and you've got a good start.

 

Colleen

[Healthsohard]

I'm pretty sure my thyroid has been checked. Next time I'll see my dr I'll double check though. I'm positive my first neuro checked my thyroid to rule that out with my seizures.

[GF Lover]

Just a quick note on the thyroid.  Some will give a normal range of 1-3 or 1-6.  With someone that has no symptoms that would be fine.  When your autoimmune system is whacked then it helps to refine your personal "Normal" range.  I feel my best with it a 1 or so.  If it goes up a point I feel it.  Might be worth your time to take a look at your results and see if there is enough history to see a trend.  If not, start getting it tested every 3 months to see where it falls and how you are feeling.  

 

Colleen

[Healthsohard]

Thank you very much

[nvsmom]

I was going to pipe in with advice but Colleen said everything that I would have said.    I'll just say good luck again.

[Healthsohard]

thanks nvsmom

[GF Lover]

Your Welcome Healthsohard. 

 

Colleen

[Healthsohard]

Got my celiac results back for blood test and it was negative. Yes, I have been eating gluten. Do I still pursue endoscopy with gi?

My results will be emailed to me tomorrow so I can post them.

Let me know your thoughts.

[Healthsohard]

I must mention my connective tissue disorder blood test still hasn't come in yet.

[nvsmom]

Do you happen to know which tests were run?  Some tests are better than others, and some doctors will only run one or two tests rather than five or so.  I mention it because some celiacs are positive in some tests (like only IgG based tests or just the DGP IgA test) so one or two tests could miss you.

 

If they ran a bunch of tests then chances are you are not a celiac BUT it is very possible to have a positive biopsy and negative blood tests - it's not common but it definitely isn't rare.  If you are comfortable with the procedure, and the doctors are willing to do it, you might as well go for it.  Many doctors don't realize that the endoscopy is ideally used for inconclusive test results; most of them seem to use it only as a confirmation of celiac disease after getting positive blood tests.  

 

It could also be non-celiac gluten sensitivity (NCGS).  It seems to be more common in those with other health issues too, plus it's much much more common than celiac disease.  If all tests are negative, I would try the gluten-free diet (strictly) for a few months and see if it helps your health.

 

Good luck with those connective tissue tests.  Let us know how it goes.