Overwhelmed by This Possibility

[cyclinglady]

Even when glutened, I have YET to have a positive TTG (IgA or IgG).  Before you give up on a celiac diagnosis, get the GI to order the rest of the panel.  Make sure it is firmly ruled out.    This happened to my 20 year old niece.  celiac disease was completely ruled out (blood and endo), and colonoscopy clear.  Finally, a pill camera found Crohn's at the end of her small intestine out of reach of both scopes.  Note that she could still develop celiac disease one day.  Not saying you have Crohn's, but be persistent and continue to advocate for your health!  

 

 

Keep eating gluten!  

[icelandgirl]

Hi Galaxy,

This does not mean that you don't have celiac.  You need a full panel done.  I only test positive on the DGP IgA test.  You still need tTG IgG, DGP IgA, DGP IgG and EMA.  Ask your Dr to order the rest?  Do keep eating gluten until all testing is complete and definitely keep advocating for yourself!  You deserve to feel good!! ((((((Hugs))))))

[Jmg]

39 minutes ago, icelandgirl said:

Do keep eating gluten until all testing is complete

and once that's happened if results are negative please do properly trial the gluten free diet regardless. So much of what you've posted suggests you're on the right track with this, results notwithstanding.

Good luck!

[GalaxyDuster]

Thank you all very much. I actually cried when I got the answer. I wanted an explanation that I could "fix." Now I'm back to thinking I'm just weak and possibly crazy.  I know I'm not crazy, but you know.

[icelandgirl]

1 hour ago, GalaxyDuster said:

Thank you all very much. I actually cried when I got the answer. I wanted an explanation that I could "fix." Now I'm back to thinking I'm just weak and possibly crazy.  I know I'm not crazy, but you know.

That makes sense...I cried with relief when I got my diagnosis just because there was finally an answer.  

Please know that you are not weak or crazy.  Keep pushing for testing.  It could still be celiac, it could be Crohns.  Push your Dr's to figure this out. 

Best wishes.

[ravenwoodglass]

12 hours ago, GalaxyDuster said:

Well guys, my blood test came back negative for celiac disease. Total IGA =161 (normal), IGA-TTG was < 1. I'm really quite surprised. My GI appointment was bumped up to 5/10 at least, so I won't wait til June to see them. My quest to find out where my lost 40 lbs went continues. Thank you all for your kidness and expertise while I waited for my answer. I can come back and let you know what they found out, in either case. Thank you very much again. All of you stay well!

It is too bad that so often a full panel isn't done. Glad your appointment got moved up and hopefully you will get a clearer answer from the GI. Do keep eating gluten until the celiac testing is done.  Once the testing is done do give the diet a good strict try. Hang in there.

[ravenwoodglass]

7 hours ago, GalaxyDuster said:

Thank you all very much. I actually cried when I got the answer. I wanted an explanation that I could "fix." Now I'm back to thinking I'm just weak and possibly crazy.  I know I'm not crazy, but you know.

Wish I could give you a hug. Unfortunately I know how that feels with Neurologists, Internists, Endocrinologists, Rheumatologists, GIs..... I got so tired of crying my drive home after refusing yet another script for Prozac.  I do hope your GI can give you some answers even if it is just to rule out other possible issues. Keep on the gluten and we are here for you.

[GalaxyDuster]

Hi. I wanted to let you all know, I had my upper endoscopy on Friday (5/26). I'm still waiting for my biopsy results. They took samples of the esophagus, stomach and duodenum. They said I had a very reddened, inflamed antrum (lower part of stomach, before the duodenum starts). I'll let you know how it turned out, either way.

[icelandgirl]

Hi Galaxy!

So good to hear from you!  The waiting game is hard, but you should have the results soon.  Please do let us know when you get them.  Hugs!

[GalaxyDuster]

Hello, everyone. I wanted to let you know about the results of my biopsy.

I do not have celiac disease. All they found was signs of chronic inflammation in the antrum of my stomach. They believe it is from the 1200-1600 mg of ibuprofen I'm taking every day, combined with acid reflux. I will have a gastric emptying study done just to make sure there is no mechanical problem with my stomach.

I want to thank you all again for your kindness and support while I've gone through this painful and emotional journey, losing 40 lbs and being nauseous and never hungry and scared of what it means. You are truly the kindest people I've ever met on the internet, and everyone who is diagnosed with celiac disease is lucky to come here and find you to help them. Best wishes to all of you.

-Sara

[Jmg]

Sara, well done for getting through the testing process. It's not easy and I'll bet you're relieved its over.

Having said that I can't reiterate the following point more strongly:

On 4/15/2017 at 7:58 PM, Jmg said:

See the doctor, get the blood test and the scope and stay on gluten till they tell you that they've finished diagnosis. If you test positive for celiac then you have your answer and we will help you in the diet. If you test negative however DO GIVE THE DIET A CHANCE! You may be like me, someone who tests negative but still reacts to gluten and you don't want to miss finding that out.

I share so many symptoms with you and I tested negative, blood and scope. However I'd gone gluten free enjoyed symptom relief then saw them return on the challenge so I already had correlation. My GI advised me to go gluten free for life based on what he observed during my challenge. 

You've not had that correlation and presumably the doctor's having excluded celiac have told you not to worry about eating gluten? This isn't an attack on them neccesarily but consider that this area is not yet fully understood, there may be new tests available soon which would give more clarity, but for now there will be some who are excluded who really need to be gluten free. 

Give the diet a proper chance, there are many, many people who test negative but are affected by it. Yes it's a pain, but if you try it and you get relief you will then at least be able to make an informed decision as to what is best for you. 

Best of luck!

Matt