First Post - GI seems thorough, getting tested, etc

[Mayrnald]

Hello, I'm brand spakin new to the idea of having a gluten issue/possible celiac, (definitely have IBS, definitely a food allergy forming person). 

I've had symptoms which I've definitively tied to gluten for the last few years, but I've been having health issues since teen-hood, including intestinal pain for 24 years (at any time, anyone could have ordered an endoscopy, but no, just now). I'm 45.

Went to the GI and she has ordered a bunch of tests to rule in/out celiac. 

What I want to know is if I need to ask for any other tests or if I should be doing anything differently. I went gluten-free for about 3 weeks, then went to see GI, she said I need to go back on gluten (OK, doing it). She said 3 weeks on should be good enough to get enough of an idea. Seems legit. 

She's ordered: 

ultrasound of abdomen
endoscopy
CBC, platelets & AUT DIFF
LFTs
TTG, AB, IgA ,IgG
Immunoglobulin A
C-Reactive protein
Thyroxine Free
TSH

Am I missing anything? Any advice for being a good advocate for ones self? I'm trying to get educated about this and all the other possibilities. 

Thanks so much for any advice and also for being here. 


 

[RMJ]

I’d add the blood test for deamidated gliadin peptides, DGP IgA and IgG.

[cyclinglady]

Me too, because I test positive only to the DGP IgA (even on follow-up tests).  The TTG test is very good, but does not catch all celiacs.  But it could also be done to help confirm a diagnosis after the endoscopy has been completed and if villi damage is revealed (many other things can cause villi damage beside Celiac Disease).  Talk to your doctor about it.  

[Mayrnald]

Thank you very much. I'll call her in the week and ask about it. 

[cyclinglady]

Advocating for yourself?  1.   Learn all you can about celiac disease or any other issue you might have.  2.  Create a family health history tree.  I did this for my extended family.   Made it easier for my niece to get her Crohn’s diagnosis after they ruled out celiac disease.  Her GI was impressed as were my doctors.  Create a nice visual chart that can be read in a glance.  Much easier than the history provided in the chart.  3.  Keep and maintain all health records.  I have my family’s health history in a physical and electronic file.  Everything.  I started this because we are self-employed and insurance companies want to know everything.  “What, you failed to disclose a bout of flu in 2012?  We are not going to process your claim as you did not disclose this health information on your application.”  (This is one issue that resolved due to the National HealthCare Act.). 4.  Communicate via letter or email with your doctors.  I love the patient portal.  I found that doctors tend to respond to the written word and it saves me time.    Be nice, be informed, and take the time later to thank them.  5. Write a one page synopsis of your current symptoms and confirmed diagnosis.  Attached a few labs to substantiate your claims.  6.  Take photos if necessary.  This suggestion was helpful for me last year when I had a six month bout of chronic daily hives which tended to appear by afternoon and not during the morning hours when I was meeting with my doctor.  7.  Take in a friend to your appointments, especially if you are not feeling well.  My hubby took notes and asked intelligent questions.  Something I could not often do when I was really sick.  

I hope this helps!  

[Mayrnald]

Cyclinglady, YES! All that helps a lot. It's hard to know if more information or less is going to be helpful. I'm going to work on charting out the family. There are a lot of holes in what I know (father's family history is somewhat obscure to me, as my father died in 1979).

If I could ask one more thing... if there was one book you read that made a real difference - the AHA! book - what was it? I've read a lot of what I think is just garbage probably. And online there are plenty of resources that aren't updated. I'm sure that everyone has had to wade through a lot of that trying to figure out their yeas or nays on this stuff. 

I'll recruit my husband for the follow ups. That's great advice. Thank you again! 

[Jmg]

The secret to this forum is to reply before CyclingLady, as once she's responded there's typically nothing else to say but good luck.

Good luck!

[Mayrnald]

RMJ & JMG, thank you! 

[Jmg]

21 hours ago, Mayrnald said:

If I could ask one more thing... if there was one book you read that made a real difference - the AHA! book - what was it?

This is a good one:

[cyclinglady]

9 hours ago, Jmg said:

The secret to this forum is to reply before CyclingLady, as once she's responded there's typically nothing else to say but good luck.

Good luck!

?

[cyclinglady]

Alas, there was no Aha! moment for celiac disease.   I went in for a routine colonoscopy (yep, I am over 50).  During my GI consult, he suggested testing me for celiac disease because I had been anemic all my life.  I do have a genetic anemia is that is mild, but the iron-deficiency anemia was blamed on heavy periods — not!   Anyway, my GI was right.  Despite not having any real GI issues, I was positive.  What a shocker!

My best Aha! moment came a year later when I got my Type 2 diabetes diagnosis.  What?  I was thin!  I exercised.   I ate.... yeah, the old Standard American Diet full of gluten free (at least) cookies, chips,  and cakes.  I read the Blood Sugar 101 website by Jenny Ruhl (all info is free but you can buy a book for those without internet access like my Uncle).  My cheap meter from Walmart was a real eye-opener.  I tested my foods and determined what increased  my blood sugar to danger levels and what did not.  I shared my data with my doctors who were impressed but could not themselves imagine life without all that sugar!   They encouraged me to stay the course because who can argue with lab  results?  As a result of my dietary changes, I was charted as a prediabetic for four years (okay, some falling off the wagon occurred)  and now am non-diabetic.  How cool is that?  I might get to keep my eyesight, kidneys and feet! 

 

 

 

[Wheatwacked]

Dr Joel Fuhrman, Eat to Live proved to me that the concept of the SAD diet is real and worldwide. Dr Davis, Wheat Belly has the best practical advice and proved to me that the S in SAD is for sandwich and recovery is possible. His suggestions have worked remarkably well for me. I started with debilitating fibromyalgia at age 60, controlled with Prednisone, and that is getting better. At age 60 it took 30 mg Prednisone and now at 67 I am currently on 15mg Prednisone for that pain so improvement is slow but real. Then I read Fuhrman, then I went gluten free, then I read Davis and I am steadily improving. Cylcinglady's advice about tracking is invaluable.

My list of other symptoms, I lose count at 16, most of them I was told there is no treatment, it is normal, don't be a hypochondriac,  I would have to live with.  Some going back to my early childhood like not being able to nose breath, is getting shorter. You are on the right track.