New..have Some Questions Re: Testing

[false-light]

Hi all,

So basically, here's a bit of background, i'll try to keep it succint as to not totally clog up the post.

10 years ago (during high school) I started feeling sick everytime i would eat breakfast (cereal and milk). So i stopped eating breakfast.

7 years ago I was also a vegetarian, working at a bread store, so my basic intake of food would consist mainly of carbs, and maybe some fake meat, but mainly carbs, however, i usually felt fine, maybe a bit bloated sometimes, but nothing crazy. My roommate at the time killed himself, and all of a sudden, food was terrible, everything I ate made me sick, I felt that I could keep nothing but chicken noodle soup down, everything would come right back out (although never puking, just intense diarrhea right after I would eat). It went on for a long time, and I went to the doctor, and they tested me for a slew of things (not one of them being celiac), and ended up thinking that stress was the culprit. I was also diagnosed with anemia, and began to eat chicken and fish ( I still do not eat red meat).

Things got better, I ate a lot of carbs still, and generally felt ok, but would have periods of feeling very lethargic, still having anemia, and anxiety. I cut out a lot of foods that i felt "made me sick" (lettuce, tomatoes, corn, tofu).

This year, I started feeling sicker, not really having diarrhea like I had before, but I would be constipated, or just feeling "full", I would also have a lot of hot flashes and a general "unwell" feeling. I also had been having a feeling of a lump in my throat for the past 5 years or so - like I couldn't swallow. I googled "stomach upset + anemia" and came up with a lot of resources indicating that gluten might be the culprit.

I had gone to my allergist, and she tested me for everything, including wheat, which turned up negative, because I didn't have an actual "wheat" allergy (which I knew). She referred me to a gastro, however i never did go, and opted to see an ENT instead. The ENT discussed gluten intolerance, and she noted that I should try a gluten free diet to see if it helped with my myriad of symptoms.

I've been gluten free for roughly 6 or 7 months now. I've felt loads better after my initial "starting out" period of a month (where I was increasingly gassy, and bloated). I started having regular BMs which has never happened to me before, and they've been good too

When I last went for a physical from a new doctor, I mentioned that I was gluten free, and that my mother had asked that I get my thyroid levels tested. The doctor also did a celiac panel (i guess, I know they drew blood and my test results came back). I told her that it would show up negative since I had been gluten free for 5 months when I got tested, but she could do it anyways.

So my test results came back - I was placed at a 12. (0 - 19 meant negative, 20-27? meant borderline and anything above was positive). Now...for being gluten free for 5 or so months (and strictly gluten free, save for a glutening while I was on vacation) I expected my levels to be closer to 0 than to 19. I know that this is no way an indication that I *am* celiac, but after going gluten-free many of my symptoms have gone away. I can't remember the last time I had diarrhea, my knee pain that i've had since i was 16 has been gone (I've never been able to stand for a full concert, and I was able to dance and stand for 4 concerts in a row, spanning 3+ hours each night). My anxiety went down for the most part, and I felt healthy, although lately my anxiety has crept up on me pretty badly.

I did also find out that my grandfather has always had "issues" with bread and pasta, and that a second cousin has celiac. So I guess my question would be, should I continue to base myself as having celiac? Does anything, (including the numbers) seem to point that its probably the case?

and does anyone have celiac + anxiety? Its becoming increasingly hard to cope with my anxiety lately, and I am going to the doctor next week about it, but I'm just wondering if anyone else has any coping skills they use.

[Dixiebell]

Welcome!

I have had anxiety for a long time since high school. Almost a year ago my son started having stomach aches and many other symptoms. His new Dr. decided to test him for celiac. The result was negative. I decided to have one too because my g-mother told me of our family history of almost everyone having bowel problems. Mine was negative too.( my Dr. said she recommends that I see a mental health care specialist because anxiety can cause so many different problems) So we decided against the endoscopy for our son and just tried the gluten-free diet. I decided I would do it with him and see if it would help me too. I started taking fish oil, B complex and D along with gluten-free and I was able to taper off prozac. My anxiety is gone. It is really strange for me because I have lived with it for so many years. Now when I think about it, I would have anxiety over the strangest things.

Be sure to have you vitamin levels checked when you see you Dr.

I hope this can help you.

[Skylark]

Your test results are completely negative. The 12 is right in the middle of the reference range, meaning the lab cannot distinguish your results from the usual background in the assay. Immunoassays generally don't give zero readings. The negative result means either you are successful with your diet, or there were no antibodies to detect in the first place.

If the gluten-free diet helps, stick with it. Celiac is in your family, and you have a lot of the symptoms of gluten intolerance/celiac. Celiac is only a label, and a label is not nearly as valuable as knowing that gluten is making you sick and you should avoid it. You could eat a high gluten diet for a month and get the blood tests, but they often are false negative anyway. My doctors have never encouraged me to do that, as I have so many celiac symptoms and would get quite sick with a challenge.

I get anxious when I'm glutened. I have to be pretty strict, mostly cooking at home and really limiting the amount I eat out. I also go easy on gluten-free breads, cereals, and cookies. I find taking fish oil regularly helps with anxiety. Also, you can get some inositol powder from the health food store. My psychiatrist friend said it's been tested and is safe up to 12 grams a day. You can put some in your water (it tastes slightly sweet) and she recommended setting it up so you get about a gram per hour.