Pending Diagnosis/anxiety

[veryami1]

Hi everyone, this is my first post. Every time I do a search on celiac, the most helpful responses seem to be this website/forum, so I figured I would sign up.

 

I am recently diagnosed with a wheat allergy. I've dealth with years of gastrointestinal distress. I went to a few GIs in the last two years. One called my problems IBS without running any tests and sent me out the door.  Another doctor did a colonoscopy, which came back negative, and also chalked up my symptoms to IBS.  I've dealth with alternating diarrhea, constipation., gas, bloating, and a number of other non-GI related symptoms - asthma, finger swelling, hives, runny nose, nauseau.  My symptoms seem to come and go every few years but it's back and I've decided I'm not willing to deal with this anymore. My gen practicioner found the wheat allergy, and I decided to make an appointment with a GI on my own to further investigate. Seems a lot of my symptoms could point to a potential celiac or gluten sensitivity issue.

 

I am pending the results of a celiac genetic test.My doctor said it would be the test of choice since I've already been gluten-free for a few weeks (since my wheat allergy diagnosis). I do have a few questions:

 

1. Doctor's assistant wanted me to come in to review my results of the genetic test, saying it was a complicated result, based on percentages, and it better to review with the doctor in person.  Is this legit? I know the doctor ran a celiac profile - would this also test of antibodies, or just genetic testing? Does anyone have an idea of what I can expect once I go in. I can't wait to hear the results. As crazy as it sounds, I want a positive result so I can just work on getting myself better again.

 

2. On a somewhat related topic, I figured I woudl ask ... how do you all deal with the anxiety of going out in public, when there's always a chance of the big d? I'm in constant fear of public D, to the point where I sometimes cancel plans because I am too embarassed. I don't go all the time, but it's enough where there's a chance it could happen, and I'd rather not deal with it. I know my friends won't judge me, but regardless, I am embarassed to go to the bathroom multiple times, esp in public. I'm afraid strangers will judge me, or that i won't get to a bathroom in time.

 

thanks in advance! I'm looking forward to getting you know you all more here

 

~Ami

[124chicksinger]

I know very little - like you, I came here to post before I got my test results.  Like you, I share many of your symptoms.

 

Until you see the doctor, you're going to be worked up over what may or may not be celiac. I was the same, wanting answers NOW. Having the genes doesn't mean you are positive for celiac, but that celiac can't be ruled out.  The gold standard celiac diagnosis is positive antibodies and positive endoscopy with pathology testing of the small intestine biopsies, or having HD, the skin condition, which indicates celiac.

 

I also know what you mean about public D because the urgent explosive D would often happen to me at work during and after lunch, and it took a while for me to make the connection to what I was eating, and often it was wheat/gluten.

 

Certainly, someone more knowledgeable than I is going to answer your post with better/more informed information.  What I want to add tho is that whatever the results of your tests, gluten is a villain, that I do not doubt.  I am negative in blood and scoped biopsies for celiac, but I chose to eliminate gluten anyhow "as an experiment."   3 weeks in, I have had D only 2x, and am less constipated and having more normal movements.  The same could possibly happen for you by eliminating gluten.  BUT DON'T ELIMINATE IT until you are done testing.  In the meantime, I would advise you to recall the foods you ate when the urgent D occurred, and when out make it a point to not eat those items, or not eat altogether when out.  If you don't put something in during those situations, nothing can come out near immediately. Of course, I'm assuming a causal relationship between food and D, which is how it was for me.

 

Don't sweat getting the results; I know you are anxious, but you are not alone. Soon enough, you will have some answers.

[anti-soprano]

Hi Ami and Chicksinger,

Welcome to the forum!  

 

Ami- I'm a bit confused by your post.  When you say you were diagnosed with a wheat allergy, was that by an allergist (a skin test)? And if you have been avoiding wheat, the main source of gluten, what exactly have you been eating that is giving you all of these problems currently?  A lot of malt, barley, or rye?  Maybe you've become more sensitive to small amounts having taken out the larger sources?  If your "wheat allergy" was not a skin test, is it possible that you may simply be a celiac?  It is possible to have both a wheat allergy and to be celiac.  They are different things.  But I am just curious if the label was correct.

 

The genetic testing I received was very clear when I received it at home.  But I had already had a positive endo biopsy and was positive for antibodies, so it was expected.  My doc simply said that I carried one of the genes associated with celiac and didn't explain it any further than that.  It can get quite complicated, based on other posts I've seen.  But I'm not sure we need to know anything more than positive or negative.  Someone chime in if I'm off base...  The celiac panel is a test for antibodies.  It is separate from the genetic testing.  Maybe the doc wants to see you because you might not be eating enough gluten for the celiac panel to read as a positive?

 

I'm afraid I can't help you much with the anxiety over the bathroom.  I experience C when glutened.  You guys with D would just laugh and laugh at those of us who pray from a BM as if we were praying for rain after a drought! I would even do a dance if that helped!! 

 

Chicksinger- I'm assuming that you're a chick who sings!  If that assumption is correct, have you found that your reaction to gluten effected your voice? 

 

Shellie

[veryami1]

Hi Ami and Chicksinger,

Welcome to the forum!  

 

Ami- I'm a bit confused by your post.  When you say you were diagnosed with a wheat allergy, was that by an allergist (a skin test)? And if you have been avoiding wheat, the main source of gluten, what exactly have you been eating that is giving you all of these problems currently?  A lot of malt, barley, or rye?  Maybe you've become more sensitive to small amounts having taken out the larger sources?  If your "wheat allergy" was not a skin test, is it possible that you may simply be a celiac?  It is possible to have both a wheat allergy and to be celiac.  They are different things.  But I am just curious if the label was correct.

 

The genetic testing I received was very clear when I received it at home.  But I had already had a positive endo biopsy and was positive for antibodies, so it was expected.  My doc simply said that I carried one of the genes associated with celiac and didn't explain it any further than that.  It can get quite complicated, based on other posts I've seen.  But I'm not sure we need to know anything more than positive or negative.  Someone chime in if I'm off base...  The celiac panel is a test for antibodies.  It is separate from the genetic testing.  Maybe the doc wants to see you because you might not be eating enough gluten for the celiac panel to read as a positive?

 

I'm afraid I can't help you much with the anxiety over the bathroom.  I experience C when glutened.  You guys with D would just laugh and laugh at those of us who pray from a BM as if we were praying for rain after a drought! I would even do a dance if that helped!! 

 

Chicksinger- I'm assuming that you're a chick who sings!  If that assumption is correct, have you found that your reaction to gluten effected your voice? 

 

Shellie

Hi Shellie,

 

I went to the doctor for a routine check-up, mentioned my stomach symptoms, and she did a blood allergy panel. As far as I could tell, the blood test did not test for celiacs, but it did test for common food and environmental allergies. This was about two weeks ago. The results showed a wheat allergy, so I've given up wheat. I basically decided at the same time to cut out gluten entirely to see how it affected me.  Week 1 I had one D. Week 2 I had another really bad bout of it, but I suspect food poisoning (bad shrimp!). My bowel movements seemed to be improving until the bad shrimp incident.  In between week 1 and week 2, I had horrible cramps and my husband, in trying to do whatever he could do, took me to the ER, where they did a CAT scan that only indicated gastritis. Blood tests there showed a slightly elevated white blood cell count. They wanted a stool sample, but I was unable to provide one.

 

The GI I met with was about a week ago. I've since had the genetic testing, the results of which were sent to her office. I go in two days to discuss with her the results and next steps.

 

I suspect I may have celiac and the wheat allergy.  I do seem to be less symptomatic in regards to hives and my nasal allergies. Based on what I've read, I need to give my intestines a bit longer to heal before I can tell if I am gluten insensitive or not. If I don't feel better in a month - do you think that long enough to determine it might not be working for me, and maybe something else is the culprit? 

 

I hope this doctor knows her s$&% and can get to the bottom of this. I think the first time I went to a GI was ten years ago!

 

Side note, I apologize for my HORRIBLE spelling errors in the first post! I was so anxious to post, I didn't even spell check. Ugh, I'm a mess!

 

Ami

[Cara in Boston]

My son was diagnosed with Celiac by blood test and endoscopy.  I just wanted to let you know that the genetic test will not confirm whether or not you have celiac.  My son's genetic test indicated he had a LOW probability of having it, leading his first doctor to determine that he did not have a problem with gluten.  Luckily, we didn't stop there and continued looking.

 

I had a positive blood test for celiac and that was enough for me.

 

Keep a diary of all your symptoms . . . sometimes it is hard to tell that you are improving.  For me, I just used a calendar and every week, I had less and lees to note.  After about a month of being gluten free, I maybe had one symptom every two or three weeks.  Three years later, I STILL have anxiety about bathroom issues, even though I no longer have the issues.  I guess if you worry about something for years and years, it is a hard habit to break.

[nvsmom]

I'm not a huge fan of the genetic tests. They basically tell you if you are in the group of people (around 30% of the population) which is more likely to get celiac but a negative test doesn't mean you can't get it. We have board members who had negative DQ2 & 8 tests yet they had positive tests for celiac disease.... Doesn't seem to help much in my opinion.

 

If you are worried that genetically you are at risk of developing celiac disease, you could always look at your family history. Does your family have a history of autoimmune problems like celiac disease, thyroiditid, diabetes (T1) RA, lupus or things like that? If so, you're at risk. I have celiac disease on both sides of my family, thyroid problems are very common and have a cousin with RA; plus I already had one AI problem decades ago so once I heard of celiac disease, I knew me and my kids were at risk.

 

You might want to request celiac disease tests immediately. Some people  have higher auto-antibody levels that linger for weeks, months, or even a year (in the tTG IgA test). Ask for these tests and get them done as fast as you can - if possible:

• tTG IgA and tTG IgG - these are the most common tests and the ones that seem to stay high longer
• DGP IgA and DGP IgG - great new tests that are good at detecting early celiac disease, but they tend to become negave fairly quickly
• EMA IgA -  shows advanced damage and will normalize faster than tTG tests
• total serum IgA - a control test
• AGA IgA and AGA IgG - older and less reliable tests that aren't used as often now; thought to work for some with non-celiac gluten intolerance (NCGI)

I can't offer advice on the big D. I had the opposite problem and bloating. Give your symptoms a few months to normalize. Some symptoms improve quickly but others can take months or years to get better with the gluten-free diet.

 

Best wishes.

[124chicksinger]

Hi Ami and Chicksinger,

Welcome to the forum!  

 

.......

 

Chicksinger- I'm assuming that you're a chick who sings!  If that assumption is correct, have you found that your reaction to gluten effected your voice? 

 

Shellie

 LOL Shellie - I am an old lady that now sings occasional karaoke with my grown daughter. Back in the late 70s, early 80s, I sang with a few local bands in local clubs in New Jersey and had a hoot and hollering good time, tho we never got famous

 

Gluten doesn't seem to affect the voice, lol, though I have a geographic/fissured tongue that I'm hoping going gluten free will heal.

[Fenrir]

Hpefully your GI doctor is well versed in celiac diagnosis (as they should be these days). They should order a panel that includes a tTG IgA and total IgA at the very least. tTG IgA is a pretty solid test for Celiac and the new DGP test is at least as good, if not better than the tTG IgA and EMA testing can be helpfull as well. 

 

Genetic testing is almost useless in that all it can do is show a high probability that you don't have Celiac Disease but it isn't even 100% for that and if it is positive id really doesn't even mean thata you have Celiac at all. So, it is more or less a waste of time.