Newbie...possible Celiac Symptoms...

[JessX3]

Hi all!

 

My name is Jess and I'm a newbie looking for some advice.  

 

A little background:  My son was born 4 years ago and around that time I started having occassional bouts of very smelly gas.  It would come and go and I didn't think too much of it.  But this past year it got really bad, to the point that I am embarrassed to eat out, as I never know when it will happen.  My sister in law suggested maybe it was a dairy issue and I looked it up and figured, maybe so, so since Christmas (on my docs advice) I have done my best to avoid dairy, although never getting too far without an accidental exposure of some sort (that stuff is in EVERYTHING!)  Anyways, occassionally I saw improvement, but it has never been consistent. 

 

In September of last year I was diagnosed with overactive thyroid.  My levels were very, very high.  So I figured, ok, that's what's causing my trouble.  After testing and things, I was officially diagnosed with Grave's disease and began treatment.  By this time I was having daily bouts of diarrhea.  I discussed it with my doc and we decided it was probably due to my thyroid.  The first two weeks I was on meds, it seemed to improve, but now it's worse then ever. I was also watching my dairy intake at that time, but I have zero idea how much gluten I was eating.  My meds have not been adjusted and my thyroid is responding well to them.  My levels have been back in the normal range for quite some time now, so you'd think my symptoms would also be improving...

 

Anyways, what had me thinking...is I started keeping a food journal. Yesterday I ate A LOT of wheat.  I had cheerios for breakfast (dry), sandwiches for lunch (4 pieces of whole wheat bread), and pasta for supper.  This is not typical for me.  I don't normally eat that much wheat in a day. I had bouts of diarrhea after every meal, with gas and cramping an hour or so after eating supper. 

 

It's got me wondering now. 

 

I have a great doc, but it is very hard to get in to see him.  I am looking at a good month wait.  I don't want to keep eating gluten that entire time if avoiding it will bring me relief.  I also wondered if I should eliminate it for a couple weeks and see if it helps before seeing my doc...but if it does, no way am I going to want to introduce it and suffer again.  What to do?  What to do? How important is it to get an official diagnosis?  If I know it helps, and I avoid it, isn't that the main thing?  (we are in Canada, so I can't get into see a specialist without going through my doc first)

[nvsmom]

Welcome to the board.

Hashimoto's and Grave's are fairly common among celiacs; I think it could be worth testing for. If your doctor will ate that long to get into, perhaps a drop in clinic might be the way to go - i know how frustrating the waits can be (I am in Alberta). At a clinic you might get the abs ordered faster and then all you have to do is wait a few hours for a drop in blood test or book blood tests a couple of weeks away.... Our health system as it's problems. Lol.

The tests to ask for are

tTG IgA and tTG IgG

DGP IgA and DGP IgG

EMA IgA

Total serum IgA (control test)

AGA IgA and AGA IgG (older and less reliable tests)

If your lab system is anything like mine, all you'll have available to you is the total serum IgA, and the tTG IgA (if it is positive then they do the EMA IgA). The tTG IgA is about 95% specific to celiac disease but it's sensitivity is only 75-95% so there is a chance it could give you a false negative.

To do those tests correctly you must be eating gluten in the 8-12 weeks prior to testing so do not stop now if you are planning to get tested. A gluten free trial could mess up your tests, plus only a few symptoms resolve in the first few days gluten-free - others take weeks, months, or even years. We usually recommend a gluten-free triial 6 months for one to determine if they have a gluten intolerance (once testing is done and if it is inconclusive or has questionable results.

If you think you can follow the gluten-free diet, 100%, including eating out, soy sauces, and cross contamination issues, then I say go for it, but many of us find a diagnosis can strengthen our will power. Eating entirely gluten-free if a committment that can be a lot of work so a diagnosis can help.

Also, celiac disease is genetic so your child is at risk of developing celiac disease too. He should be tested every couple of years or as soon as symptoms arise.

Good luck in whatever you decide to do.

[JessX3]

Thanks for the response.  I felt silly after I posted yesterday.  I would definitely rather have an actual diagnosis and know for sure.  I don't want to try gluten free if it isn't necessary.  I am just feeling so desperate.  I'm sick of feeling bleh. 

 

I'm going to give my doc a call tomorrow. 

[nvsmom]

I know how you feel. I did not want to go to the doctor with this, I hate doctors, so I bought a home test ( Biocard tTG IgA test) but when it came out positive, I finally felt that I had to go. Lol

Good luck with the doctor!

[Fenrir]

The celiac club is definitely not one you want to be a member of but it's better to know you are a member and get feeling better than it is trying to avoid it.

[NoGlutenCooties]

Hi Jess -

 

I think it is important to get the testing done for three reasons: 1) you'll know that there isn't actually something else potentially more serious going on, 2) it is easier to stick to a 100% gluten free diet if you know for sure that you have to, and 3) you have kids and Celiac is genetic - if you have Celiac you'll want to get your child tested periodically.

 

Keep in mind that you only need to be eating the equivalent of 2 slices of bread each day - so you don't have to go nuts with the gluten.  If you spread it out over the course of the day you may be able to keep the intestinal symptoms manageable until all testing is completed.

 

Good luck!

[JessX3]

 

 

Keep in mind that you only need to be eating the equivalent of 2 slices of bread each day - so you don't have to go nuts with the gluten.  If you spread it out over the course of the day you may be able to keep the intestinal symptoms manageable until all testing is completed.

 

Good luck!

 

 

Good to know!!  Thanks!  I am not excited about testing, but I'm hoping to get some answers.