Confused And Overwhelmed

[Dino]

I figure that there is info already like this somewhere on the forum but after reading so many I could not quite get what I was looking for.

I have been battling fatigue for quite a while now. Initially it was thought to be a thyroid problem since I have a family history. It ended up being negative. I have been having GI issues as well. Almost a constant right side stitch. I thought I was lactose intolerant but that did not stop after the enzymes. Went gluten free for about 4 days. Gut started to feel better and then accidentally ate half a bagel and felt terrible about 1 1/ hour later.

Went to dr. and he told me I was IBS based on my first sentence, but relented when I told him the story. Still sent me with a prescription to treat GERD, which was not one of my complaints. He just asked if I have had heartburn. I stated once in a while.

Took blood tests.

TtG IgA 3 <5 Negative

Total IgA normal

Gliadin Antibody IgA 30 >17 Positive

All other values regarding blood work came back normal (including Folate, B12) with the exception of an elevated bulirubin level.

Just had an upper GI series with barium drink. No results yet.

Was wondering if paying the $300 bucks for a genetic test for celiac is worth it.

[WheatChef]

Was wondering if paying the $300 bucks for a genetic test for celiac is worth it.

I'll save you 50%

Total IgA normal

Gliadin Antibody IgA 30 >17 Positive

There you go, you're gluten sensitive. Remember the genetic tests don't show celiac disease only gluten sensitivity which puts you at a higher risk of celiac disease. Doesn't really matter one way or another as the treatment and urgency of treatment is exactly the same. Feel free to send me the $150 at your earliest convenience.

[Skylark]

Was wondering if paying the $300 bucks for a genetic test for celiac is worth it.

All the genetic test does is tell you whether you're in the 30% of the population with a genotype that makes it possible to have celiac. Waste of $300 if you ask me. Spend your money on a good rice cooker, gluten-free cookbooks, a new toaster, and fresh cutting boards instead.

Your IgA result is confirming what you already knew. You're gluten-sensitive.

[ravenwoodglass]

Your blood test was positive, you are in the right place. If your doctor is referring you to a GI doctor for a biopsy don't go gluten free until that is done. After that test is done, if you choose to have it, you can go gluten free. Do check what your B12 levels are, if they are under 500 it might benefit you to supplement with a sublingual B12 for a while. Many of us have wonky liver panels that usually resolve once we have been gluten-free for a bit. Do read as much here as you can as being gluten free involves much more than just food. It's not hard but it does take some getting used to.

[Dino]

Thanks for all the input.

I decided to put off the genetic testing for now. Did some research and found that my maternal grandmother and my mother both have autoimmune disorders so that would put me in the high risk category. I also researched and found that high bulirubin and low cholesterol can be indicative of celiac. I do take a multivitamin and I think that has kept my B12, Folate and iron levels at normal. My dr. would not give me a referral initially and my next appt is not until the 14th. He will then probably talk about the lab results and the GI series.

With all that said, I am going to assume celiac is a distinct possibility and live that way. I have been gluten free for about a month and have noticed a difference in the way I feel.

[WheatChef]

Before going gluten free my bilirubin was so high each new doctor kept thinking I had hepatitis (yellow eyes).

[Dino]

One last question. Could my labs for b12, folate, and iron all be normal and I still have celiac?

[bluebonnet]

from what i've researched, yes, they can be in the normal range and still have celiac. reason being other areas of the intestine could be atrophied. in dr. peter green's book it breaks down how there are different areas in the intestines responsible for different nutrients. for ex. my d labs came back extremely low but iron was fine. it can attack many different systems in the body and the affects can certainly vary in the degree from person to person. if you have been avoiding gluten for a month and feeling a positive difference then keep going ... positive dietary response is just another confirmation that you need to avoid gluten.

[ravenwoodglass]

One last question. Could my labs for b12, folate, and iron all be normal and I still have celiac?

If you are taking folate that can cause the B12 to look falsely high. Do you know what the actual numbers are? If they are below 500 you should think about supplementing the B12. And yes those numbers could be in normal levels and you could still be celiac.

[Dino]

I looked at my multivitamin that I take as well as a powdered drink mix that was "natural energy" and found out I am taking over 16,000% of the RDA for B12. Guess that explains why my levels are still ok.

It is interesting to note though, I have not really lost any weight but my pants are fitting better than before I started gluten-free.

[Dino]

Well, my doctor called yesterday. Was shocked that he called me on a holiday. Sounds like he actually looked at everything and as a result of a positive blood test for Gliadin Antibodies and my symptoms as well as the lessing of those symptoms on a gluten free diet he says I am gluten intolerant/celiac.

I do have to say it is nice to have a doctor make the statement even though a dietitian and myself had come to the same conclusion with the help of input by those on this site.

I have been gluten free for about 5 weeks and have begun to feel better than I have in a long time, although I may have ate something that was cross contaminated or the Coke Zero which was new this weekend, and had a brief couple day return of GI symptoms.

Now gluten free is the way for me.

[ravenwoodglass]

Well, my doctor called yesterday. Was shocked that he called me on a holiday. Sounds like he actually looked at everything and as a result of a positive blood test for Gliadin Antibodies and my symptoms as well as the lessing of those symptoms on a gluten free diet he says I am gluten intolerant/celiac.

I do have to say it is nice to have a doctor make the statement even though a dietitian and myself had come to the same conclusion with the help of input by those on this site.

I have been gluten free for about 5 weeks and have begun to feel better than I have in a long time, although I may have ate something that was cross contaminated or the Coke Zero which was new this weekend, and had a brief couple day return of GI symptoms.

Now gluten free is the way for me.

Nice to hear you are feeling better and the doctor confirmed what you already knew. It makes it easier when they actually acknowledge what is going on.

What sweetener is in the coke zero? Sugar alcohols and artificial sweeteners can be really tough on the tummy though they are, as far as I know gluten-free.

[Dino]

Nice to hear you are feeling better and the doctor confirmed what you already knew. It makes it easier when they actually acknowledge what is going on.

What sweetener is in the coke zero? Sugar alcohols and artificial sweeteners can be really tough on the tummy though they are, as far as I know gluten-free.

It was one of two things I had that was different this weekend. From a 2006 post this was in a reply from Coke. Some minor ingredients in these products are manufactured from plants that gluten-sensitive people could react to, so we are unable to state categorically that they are totally gluten-free even though they may have undetectable levels of gluten in them. I will try it again later to see if it bothers me. The other thing was a dinner that was prepared gluten free but will have to go back and check ingredients or was cross-contaminated, but the result was the same as when I was eating gluten.

Living and Learning