MsCurious

Oh, I guess I should ask why you asked about the scarring? Is there something I should know?

Also, the reason I asked him to do the genetic marker testing was that I wasn't comfortable with the negative results, and wanted to either completely rule out celiac disease, or have reason to continue my search for answers with regard to celiac disease or gluten intolerance of some sort. Does that make sense? Just trying to figure it all out.

For some reason, most doctors seem to be hung up on tTG testing and can't move beyond that into the 21st century. It is such a shame. Most patients these days more know about it than their doctors. I am sorry you had the experience. Your tTG tests were definitely within normal limits as they say. But that does not mean that the other tests would also be negative - that's why they run a celiac panel.

With regard to your "shingles", did they leave a purplish scar behind?

Yes, they did, well... purplish red.. but they are fading a little. Hopefully, they will be gone in a few months.

Hi again,

Just wondering how you all adapt the gluten-free lifestyle within the home. Does the family go gluten-free, so it is a completely non-toxic environment at home? I am sure my husband would do that, and of course indulge in a normal diet when away from the house. How do your spouses and family feel about it? This is all new to me, so I'm not sure how difficult it is to not have cross contamination if there are toxic foods in the house. Thanks for your input..much appreciated!

For a couple of years I kept a private online diary of sorts - what I would do is type it up in Wordpad, email it to myself at hotmail, and then store it in a special hotmail folder. That way it was (and still is) always available to me but no one else. Sometimes it would be something I would also share with friends but mostly it was for myself.

Hi Mushroom,

Nice to meet you! Thanks for the tip, sounds like that would work... I'll give it a try!

Hi Nancy!

I'm neither saintly nor bored ... but I AM interested! I feel for you because your story--like mine--is fraught with frustration, pain and a search for answers. Everyone here has had a journey unique to him/her, yet there is one constant....gluten.

If gluten intolerance is an underlying issue related to your health problems, then a gluten-free diet will be beneficial. There are over 300 symptoms and other autoimmune diseases associated with gluten intolerance, and many of your symptoms are included in that list and may well be related.

Given your history, I am surprised your gastro doc didn't do a biopsy or a celiac blood panel. Not that they are always reliable, as many on here can attest. My blood work was NEG and I refuse to poison myself with gluten again for a biopsy that he should have done from the beginning.

I guess all I can say is go 100% gluten-free and see if you get relief! (It is often suggested that dairy also be avoided at first as well) I was a mess myself for a long time--a lifetime-- and little by little, I am seeing relief. Having your diarrhea CEASE will be a good indicator and (if you are like me) a cause for celebration!!

Just know that it takes TIME. This is no easy fix and patience is necessary. I have learned that from all the wonderful people on here. They are a huge source of information and encouragement. I could never have done this without them.

Good luck. I hope you feel better soon!

Irish Heart,

Thanks for posting this...it gives me hope and encouragement! I don't know if the genetic markers will show up or not, but after knowing what I've been through for a lifetime, like you... even if its not there, I am going to try gluten-free diet, because it could be a gluten intolerance. I am so hopeful, and so eager to start the gluten-free diet, even though I'm sure the transition will be difficult at first, I can only imagine how wonderful it must be not to feel sick, and have diarrhea every day of my life. I'm so ready to be DONE with that! I wish my test results would hurry up, so I can start to feel better!

Oh, and also, my doctor knew which tests he wanted to order, but didn't really seem to be up on the latest tests, and the sequence of how most celiac doctors test and diagnose. I found a video lecture (done by Dr Joseph Murray) from Mayo Clinic in Rochester, MN, which was directed to other doctors, and I forwarded it to my doctor. I hope he watched it. I did, and it was very technical, but what I did get out of it was that the tests that my doctor ordered are considered obsolete at Mayo, and they have new tests that are preferred. Not sure how I got into the professional site where the video lecture was located, but I'm glad I did!

Welcome to the forum MsCurious.

Did they do any other tests besides those?

Celiac tests:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA and IgG

Total IgA level

Deamidated Gliadin Peptide (DGP) Antibodies, IgA & IgG (this is a newer test)

IBS is really a symptom of something else going on. Many here were diagnosed with IBS before celiac. Have you had testing for nutrient deficiencies? The unexplained brusing could be low iron. The fatigue and joint pain could be low vit D.

Did your Dr. biopsy your shingles? There is Dermatitis herpetiformis (DH) which I believe can be mistaken for shingles if not tested properly.

Hi Dixiebell,

Thanks for your reply. After reading about celiac disease I asked my doctor about it, and he said based on my symptoms "it is reasonable to test" for celiac disease, but I'm not sure what the results mean. The other results I've seen have had much lower numbers even in the normal range, so I don't know if this was a different set of tests or what. I agree with you... in my opinion IBS seems like a catch-all for "we don't really know what's wrong but we know you have digestive issues...so live with it". I dont' really want to end up in that hopeless-feeling category.

Those were the only two tests he ordered originally, but I told him, I would feel a lot more comfortable with checking the genetic markers, so I know if I can completely rule celiac disease out, or if it is a possibility. My body tells me, I need to go gluten-free, based on how I feel when I don't eat gluten, and how horrible I feel when I do. No biopsy of shingles, but it had all the raging pain and rash and path of shingles. I have no doubt at all thats what it was. 5 weeks from start to finish. Thank goodness I didn't have the residual neuropathy that plagues many people that get it. BUT, his comment about having a "compromised immune system" .... makes me wonder about celiac disease. THAT would make my immune system compromised, and make me more likely to have the latent chicken pox virus reactivate.

I'm not actually diagnosed but I am pretty sure gluten is my problem

Hi Scotty, Hope you, and Nancy and I all figure this out soon! And anyone else who is searching for answers. I'm wondering if you or anyone knows of an online food diary site that isn't public? I already poured out enough info to the world... I'm thinking a private diary would be good for me.. so when I mess up posting, everybody doesn't see it! I'll be watching your progress too! Good Luck to you, Scotty!

I have so much to learn too, like how to not mess up when posting! Peek back at mine if you have time.

I plan on being a very active member here as I have so much to learn from you all so this is very liberating. LOL

Hi Nancy,

I'm still on number 8... after this post! LOL .. Lucky you! I think I accidently posted my story under your original post in the other thread. Sorry about that! I'm a NOOB on all fronts in here! Nice to meet you, and congrats on being FREE! LOL

Hi community,

I'm new to all of this and trying to make sense of it... any help or thoughts would be appreciated.

I have tried to figure out what these test results mean, and I'm waiting for HLA-DQ2 HLA-DQ8 results ... that should be back this week, but these mean nothing to me, can anyone explain?

TISSUE TRANSGLUTAMINASE IGG 0.40 <0.90- Index

TISSUE TRANSGLUTAMINASE IGA 0.42 <0.90- Index

It appears to be normal... but then I think .. why do I have ANY antibodies if there's not a reason for them? Here's my story in a nutshell, makes me wonder...

As far back as age 9 or 10 for certain, I can remember having tummy aches

moved to new topic - sorry