What's My Next Step?

[Meeshy]

So here's my story! About 12 years ago I started experiencing extreme fatigue, and very uncomfortable (sometimes painful) bloating and excessive gas (flatulence) pretty much on a daily basis! I also suffered from depression & anxiety, occasional headaches and nosebleeds, lightheadedness, and difficulty concentrating. It got to the point where I withdrew from friends and others in my life and barely left the house! I even took a leave of absence from work while trying to figure out with the doctors what was going on! After rounds of tests, going to see specialists, an endoscopy (not sure if they did biopsy for celiac disease, but probably not 12 yrs ago!) and colonoscopy, all they could come up with was IBS and reflux! I tried anti-anxiety meds, enzymes, charcoal tablets, acupuncture, and so on and so on! And when NOTHING seemed to help, I finally just gave up and figured I would have to live like this from now on!

Then a few years back while doing some online research, I came across a website about Celiac Disease! My mouth opened wide, while I checked off more than half of the symptoms listed, that I could relate too! I said, "aha, I think I found my answer"! But unfortunately convincing the doctors of this proved a lot harder then I imagined! When I asked to get the blood test, they refused, and told me to just go on a gluten free diet and see how I feel! I had already read that by doing that, it could render future testing with a false negative! But I was so miserable I decided to try it anyways! It wasn't for too long, maybe 3 week increments for 3 to 4 months and I did notice slight improvement.

Then came the new year! I vowed to make 2013 the year I get my answers! So at my last checkup, I told my doctor of my decade long struggles and DEMANDED the blood test! She agreed all though, flat out said she didn't believe I had Celiac because I don't fit the "typical" criteria of the disease! She also tested me for a battery of other things, like thyroid, anemia, vitamin D etc.

After getting the blood work done I continued to read about so many people having False Negative results and also that it's hard to find an understanding doctor! Boy can I relate! I got all my test results back and then the doctor contacted me with just a basic, all labs are fine except Vitamin D is low, and put me on supplements. NO explanation as to maybe WHY it is low! I had to do my own digging again and to what do I find? A strong link to Vitamin deficiency and celiac disease!!! So I emailed my doctor back with my concerns and reasons for not being ready to rule out Celiac yet along with some links to back me up! She responds with

"As we discussed during our visit, and from what you have found in your research, many people do not have a true allergy to wheat, but are intolerant or sensitive to it. This means you should just avoid it so you can feel better."

Ugh! Am I wrong to want a definitive answer as to do I have Celiac or not? I know ultimately if I want to feel better I need to go gluten free but I wanted to make sure I exhausted all testing first as to get the most accurate results. Unfortunately my insurance covers next to nothing, so even if I could get them to agree to an endoscopy/biopsy, I most certainly cannot afford it out of pocket right now! The doctor also did not do a full celiac panel so I'm considering trying to save up for that from an outside lab, as a second opinion! This is what she tested me for and my results:

Tissue Transglutaminase IgG:

My result= 0.17 units

Standard range=

[Meeshy]

This seemed to get cut off:

Tissue Transglutaminase IgG:

My result= 0.17 units

Standard range= <.90

Tissue Transglutaminase IgA:

My result: 0.33 units

Standard range= <.90

Gliadin IgA

My result= 7 units

Standard range= <20

Gliadin IgG

My result= 6 units

Standard range= <20

Vitamin D 25 Hydroxy

My result= 16 ng/ml

Standard range= 20-79

I also fasted before my blood test and I'm wondering if that could have affected the results? I'm just so confused and frustrated! I welcome any and all advice, similar stories, support! I feel so alone sometimes! I don't know how much longer I can keep poisoning my body!

[nvsmom]

Welcome to the board.

 

Looking at the tests, it appears that you do not have celiac disease, but as you said, there is a chance you are one of the false positives. Did the doctor test you total serum IgA or IgG levels? If you don't produce enough IgA, then your tests using that (DGP IgA and ttg IgA) will be negative regardless of whether you have celiac or not.  Approximately 5% of celiacs are deficient in IgA, which is quite a bit higher than the regular population, so it really is a concern.

 

There are many more Non-Celiac Gluten Intolerant (NCGI) people than celiacs. Both can have miserable symptoms and both have exactly the same treatment; as far as I understand it, the only difference is that celiacs can have their organs (intestines or skin) under an autoimmune attack but that inflammation and discomfort is in both sets of people.

 

I hope you find you answers soon and finally start feeling better.

[1desperateladysaved]

OH, sorry.  I didn't have classic celiac symptoms either.  However, I did have the extreme fatigue and bloating you talked about.  I guess that is why I went undiagnosed 30 years. 

 

I finally got diagnosed by a trial diet and my reaction to it.  I also had a genetic test and had the genes for celiac.  Supplements have helped me a great deal along with help from a chiropractor trained in nutrition. 

 

Diana

[GFinDC]

Open Original Shared Link wheat sensitivity article https://www.celiac.com/articles/23033/1/Non-Celiac-Wheat-Sensitivity-It- Exists/Page1.html

[bartfull]

I never got tested. (No insurance.) But even my doctor agrees that because the gluten-free diet cleared up my symptoms, and the fact that my mother WAS diagnosed by biopsy, I have celiac. It doesn't matter to me that I have no "formal" diagnosis. All that matters is that if I stay gluten-free, I feel better. If anyone asks, I say something along the lines of, "Since I was diagnosed with celiac disease, I can't eat anything with gluten." I don't mention that I am SELF-diagnosed, and no one has ever asked.

[Meeshy]

Thank you so much everyone for your advice! That is one of my concerns, that I don't think I got a full blood panel including, total IgA! I suppose I will email my dr. and ask, but after her last response, I would be happy to never speak to her again!

Since Monday I had decided to just go gluten-free again, even though the thought of not having a legitimate diagnosis and the fear of no one taking me seriously, still bothers me! I like your idea Bartfull! I will just diagnos myself but leave the "self" part out!

The real kicker is when I talked to my mom after I got my bloodwork back. I told her she should consider being tested too, because she and my brother have/had similar symptoms, then she told me that she wished she had known sooner because just a few months ago, her doctor did a routine endoscopy, but of course not checking for Celiac! Goes to show, I don't talk to my mom enough! She goes back to her doctor in a couple of months, and I asked her to look into getting at least the bloodwork done. I guess I'll just go from there and do a gluten challenge down the road if need be.