New Here. Should I Get Tested Or Am I Barking Up The Wrong Tree?

[AnyaT]

Hi all. I'm new to this forum. I've been gluten-free for about 5 days now and overall I feel better. Still tired, but not as bad. My question (and I suppose it's a common question) is should I ask my doctor to order tests for celiacs or am I just running after another thing I'm wishing will explain my general lousy feeling? I know if I get tested, I'll have to get glutened again, but hopefully that would further confirm my suspicions.

 

Let me tell you some of what I've been going through. The symptoms I was dealing with when I decided to go gluten-free were:

 

Feeling tired a lot (though I had been taking Benedryl for anxiety)

Fatigue most of the day, even though I got a good night's sleep (with CPAP)

Major, crippling anxiety and panic attacks since I got back from Spain a year and a half ago. Medications haven't helped.

Brain fog: trouble concentrating, moodiness, low motivation

I've been diagnosed with ADD since my teens (I'm 41 now)

Recurrent, major depression

More frequent headaches and migraines

IBS with constipation

Some nausea and bloating

Shortness of breath

Tingling/numbness is my left leg, which I've assumed to be sciatica

Lots of gas (I sometimes felt like I could belch my way through Wagner's Ring Cycle)

 

In my first few days gluten-free, my headaches, gas and nausea seemed to diminish. I did, however, develop a ravenous appetite and had major hunger pangs a little while after a gluten-free meal. My anxiety has dropped considerably (though I did switch SSRIs shortly before going gluten-free) and my motivation is back. I'm still tired a bit and am getting sleepy earlier (around 8 o'clock), but overall I think I'm feeling (and doing) better. The only bad thing seems to be feeling a bit depressed about what I can't eat and the challenges of maintaining a gluten-free diet.

 

So, am I crazy for thinking I might have celiacs or NCGI? Should I see my doctor? What tests should I ask for? I know another post mentioned tTG IgA and IgG, DGP IgA and IgG, EMA IgA, total serum IgA, and AGA IgA and IgG. Would a GP be knowledgable about these tests? Are there others? I know my TSH was done about a year ago and was 2.03 (with a standard range give of 0.27 to 4.20). My RBC was 4.9 (SR 4.6 to 6.1).

 

Thoughts? I don't really want to stay gluten-free if I don't have to, but I have to admit it seems to be helping.

 

Thanks in advance,

~~Anya

 

[1desperateladysaved]

I think that with your symptoms, you should be tested for celiac disease.  Your symptoms do need to be relieved.

 

Before being diagnosed I had some of the same symptoms.

Brain Fog

Fatigue not helped by sleep

shortness of breath

bloating.

Now, at 18 months gluten free, I can breath deep, Have a clear mind, and am planning what to do with my energy.

 

I hope all of the same for you.  There is a list of antibody tests and there are nutrient tests one can do.  I am leaving the list for someone else as I am not too familiar with them.

 

D

[AnyaT]

I was just looking up my doctor's phone number to make an appointment, and I remembered I'm also allergic to Penicillin, which if I remember, is derrived from a bread mold. Are other people with celiacs allergic to Penicillin also?

[0range]

Hi OP! Sorry to hear about what you are going through. I have nearly all of your symptoms as well, and thought I might throw it out there that it wouldn't hurt to be tested for thyroid disease while you are at it. Ask your doctor for thyroid antibodies test, TSH, free T3 and free T4.

[nvsmom]

I think it would be a good idea to get tested. I am glad that you realize that celiac disease and NCGI are so similar and both can be very debilitating - so many people don't take the severity of NCGI very seriously and don't realize how strictly gluten-free they must be in order to treat it.

 

Take that test list to the doctor and try to get as many tests as you can. None of the tests catch 100% of all celiacs but if you run a variety of tests (like DGPs and tTGs) you are more likely to get a definitive answer. Reume eating gluten as soon as possible if you plan to get tested.

 

You might want to get more thyroid tests done. Your TSH isn't bad, but I personally feel pretty poorly when my TSH is that high... it varies a bit between people. Request a TSH (ideally want it near a 1), free T4 and free T3 (should be in the 50-75% range of your lab's normal reference range), and TPO Ab.

 

I don't think there is anything to worry about with penicilln being grown on bread mold. I'm guessing they have other techniques now a days, and even if they do grow it on wheat, they are probably very carefula about not including wheat in the prescription. It is a good idea to ask your pharmacist about all prescriptions being gluten-free though.

 

welcome to the board! 

[AnyaT]

Thanks for all the help and feedback so far. Yesterday I made an appointment with my doctor to talk about this and ask her to order the celiac panel and hopefully thyroid and nutrient tests as well. My appointment is on September 16th. My partner is joining me in going gluten-free and seems to be responding well to it, too, so she'll be asking to get tested as well. I'm planning on staying gluten-free through the weekend and resuming a normal glutened diet next week in preparation for the tests. I have mixed feeling about getting glutened again. On the one hand, I'll have maybe a last chance to enjoy some of the foods I'm already missing, but on the other hand I'm not looking forward to feeling yucky until after the tests.

 

One question: Is it normal to feel tired and somewhat moody in the beginning weeks of a gluten-free diet? While my (and my partner's) brain fog has seemed to lift, we're both struggling for energy. We get bursts of energy and then we just want to rest. We've also been a bit blue/moody the last day or two. Maybe that's just a kind of mourning for the loss of being able to eat many of the foods we're used to eating.

 

Thanks again for all your support. I'll let you know how things go.

 

~~Anya

[nvsmom]

Oh yeah! Those first few weeks are nasty! I was so tired and grumpy... yuck. It lasted about 10 days or so for me. Hang in there.