Need Help Figuring This Out

[Bbec]

Hi, I am brand new here and hoping that some of you might be able to help me out with what to do. So my backstory. I've never had any troubles with food growing up. I've always been slightly underweight, but so is my grandmother and I look a lot like her.

In October, I was training for a half marathon and after a ten mile run, I was just wiped out like never before and my stomach didn't feel right. Not uncommon for a long run, but it felt different. And it never went back to normal. I had days where I felt totally fine, I had days where I felt just bloated, gassy, and like my digestive system wasn't working right, and then I also had a few days that I was stuck on the couch all day, utterly exhausted with no appetite.

I had a bunch of blood draws, stool sample testing, and an X-ray of my belly. No diagnosis. I saw a chiropractor and got more X-rays with no diagnosis. I asked to be tested for celiac and the blood draw came back negative. I had finally decided that it was all just stress and was about to go in and ask about anti anxiety meds, but I decided to first try an elimination diet. I'm currently on day three of cutting gluten and dairy (mostly successful except a few very sneaky things). I'm an emotional wreck, thinking about all the possibilities and the very real idea that I may never eat those foods again or be able to eat out with friends in our small town.

I have two young boys and I'm not sure if I sold force them into a gluten-free diet or even if I should be trying that yet without a diagnosis.

Any help would be greatly appreciated and maybe get me to stop crying.

Update: here are the test results.

Immunoglobulin A, S 172. Ref range: 61-356 mg/dL

I have no idea what this means.

[Lisa]

Welcome!

First I would like to ask if you were tested adequately/ properly? This is the full panel for Celiac Disease:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

If you do not have your test results, get them from your doctor and post them here. That's a start.

Celiac often requires a trigger and the stress of competition could be likely. It could be possible that you may have Non Celiac-Gluten Intolerance. There is not current test for that, other than perhaps a positive dietary response. Do you have a family history of digestive issues or other things?

And should you, in fact, have Celiac Disease....it's far better than any alternative that I can think of. A resolve through diet change. I have been doing it for eight years and I do not feel deprived in any manner. But it is an adjustment initially. That we can help you with.

No need to bother you boys until you know what you're dealing with.

Hang in there and try to get some answers. You've found a great place.

[Bbec]

Thank you. I will call my clinic tomorrow and figure out what they tested. In the meantime, should I be avoiding gluten or should I try keeping it in my diet in case there is need for more testing. I have been attempting to keep gluten and dairy out of my diet for three days now.

[mushroom]

  On 1/31/2013 at 12:05 AM, Bbec said:

Thank you. I will call my clinic tomorrow and figure out what they tested. In the meantime, should I be avoiding gluten or should I try keeping it in my diet in case there is need for more testing. I have been attempting to keep gluten and dairy out of my diet for three days now.

Yes, you should keep gluten in your diet until you are certain that all testing is completed.

[Lisa]

  On 1/31/2013 at 12:05 AM, Bbec said:

Thank you. I will call my clinic tomorrow and figure out what they tested. In the meantime, should I be avoiding gluten or should I try keeping it in my diet in case there is need for more testing. I have been attempting to keep gluten and dairy out of my diet for three days now.

Yup, as Mushroon said...stay on a full gluten diet as much as possible (or at least a piece of toast a day), in order to test as accurate as possible.

[Bbec]

Updated post with test results. Immunoglobulin A, S value 172

[frieze]

  On 2/1/2013 at 7:32 PM, Bbec said:

Updated post with test results. Immunoglobulin A, S value 172

This is basically useless, on its own. If this represents "total" IgA, it is normal. But where are the celiac tests?

[Bbec]

  On 2/2/2013 at 1:50 AM, frieze said:

This is basically useless, on its own. If this represents "total" IgA, it is normal. But where are the celiac tests?

I don't know. Apparently that's all that was tested. The notes say that celiac is unlikely but that 10% of people will show a false negative. It says "if celiac is highly clinically suspected, consider HLA-DQ typing." Thanks mayo clinic?

[mushroom]

I believe you need to go to the office and demand that they give you a copy of the results they got back from the lab. There must be more than that. What about the list in Lisa's post #2??

[Bbec]

  On 2/2/2013 at 9:17 AM, mushroom said:

I believe you need to go to the office and demand that they give you a copy of the results they got back from the lab. There must be more than that. What about the list in Lisa's post #2??

That is exactly what I have. It is the lab results sent to my clinic from Mayo clinic where the test was completed. The quote I put in #8 is what was written in the comments section on the results.

[GFinDC]

Hi,

I suggest you keep on the regular gluteney diet for now. Your test results are not completed, perhaps they didn't do them all or they just didn't give you all the information. IF you do need to go gluten-free, don't be too concerned about it. The biggest challenge is usually just getting started and learning how to eat right. People learn new things all the time and that is just one more thing to learn. There are lots of gluten-free alternatives available now for most an food you can think of. And the gluten-free diet is healthy diet for people to follow anyway.

[1desperateladysaved]

Sometimes when they take blood they store extra incase you decide to do other tests. Check with the lab.

Diana

[mushroom]

What we were looking for is the actual results relating to celiac, not the comments.

[Bbec]

  On 2/2/2013 at 7:12 PM, mushroom said:

What we were looking for is the actual results relating to celiac, not the comments.

That's all there was. The 172, the reference range, and the comments.

[mushroom]

Tthese tests that Lisa posted are what you need:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

It would appear that they did only the last one.

[Bbec]

My doctor finally returned my call and I told him all these values that my test should have yielded. He said he would talk to the pathologist about it. Did everyone have these initial tests done by their reg doctor or a gastroenterologist? I'm wondering if I. Should just ask for a referral to one.