Is Testing Necessary

[SideKick17]

I think I might have Celiac disease. But is getting the test to be sure necessary? I originally started researching nutrition for my hypothyroidism, but almost every site I looked at mentioned Celiac. I did some research on Celiac and I match several of the symptoms.

When I was 9 I was diagnosed with hypothyroidism, and since then my prescription is constantly changing. I'll level out for a little then bam it either goes up or down. I'm short, just reaching 5 feet tall. I've always been told this is due to getting hypothyroidism at such a young age.

Then in my teens I was diagnosed as anemic, from the get go I have had heavy periods so this was simply shrugged off as that. It wasn't till I ended up in the er for losing too much blood that they told me I needed to take iron pills. I take one every now and then as I prefer to try to handle things from a more healthy and safe way, nutrition. So upped my foods that were high in iron. haven't had a problem since though I'm still anemic; just no more dizzy spells that have me stumbling all over the place.

I've always had tummy problems, had a real nasty ulcer as child. Now I just go through bouts of pain, cramping, gas, nausea, constipation and diarrhea, they seem to mix and match at will.

i also get irritable to the point it surprise me, over stupid stuff that a couple years ago wouldn't have bothered me. In 2008 i experienced my first panic attack and have had a couple more panic/anxiety attacks since. I have fatigue/lethargy, brain fog, and recently I feel as though I've lost control of my brain with thoughts and feelings popping up that frankly at times terrify me.

2010 I get my first migraine. Have had a couple more since, as well as nasty headaches. I also go through bouts of lactose intolerance, change in appetite, irregular heart beats, and tingling in my arms and feet

Now my thinking is why can't I just change my diet and see if I have an improvement. After all there really isn't anything the Dr can do if i do have celiac disease since this can only be treated through diet. Any thoughts?

[Marilyn R]

Hi Sidekick,

I've got mixed feelings on this topic. I'm not diagnosed, had pretty much given up on doctor's figuring out why I had neuropathy, gait abnormality, uncontrollable "D", daily nausea/vomitting, profound depression and insomnia.

Once I went gluten-free, my condition improved remarkably. Life still wasn't a piece of cake but I was not willing to submit myself to a gluten challenge just to prove I had the disease, because I knew full well I couldn't tolerate gluten.

For me, it wasn't necessary to submit to the testing, but I'm probably quite a bit older than you.

There are some advantages to having the dx. Some doctors discount self diagnosis. If you're ever hospitalized, I don't know if the dietary or pharmacy departments will be as diligent with ensuring your foods & drugs are gluten-free.

Depending on where you live, there could be some assistance from the government with an actual diagnosis, just in case you need it down the road.

It's a personal decision, and a tough one if you've been gluten-free for awhile. If you just stumbled on the topic, I'd get a Dr's appointment ASAP (or maybe go to the Emergency Room with any of the symptoms you describe) and ask the doctor to run a Celiac Panel on you.

I waited six months or so before I consented to the endoscopy my GI encouraged. I was due for a colonoscopy anyway, and he did both procedures on the same day. They were painless, but the prep wasn't much fun. I was disappointed at not getting a diagnosis, but not surprised that the results were negative.

Good luck with your decision, and I hope you'll be feeling better soon.

[mushroom]

Welcome to the forum. Your description of your symptomatology would seem to plant you firmly amongst us - I think you have found your second home

Thyroid problems definijtely go hand in hand with celiac a lot of the time. So does small stature since you obviously had problems as a child. Anemia, GI problems, nervous system issues (your 'stumbling could well be gluten ataxia), irritability, panic attacks, brain fog, migraines, numbness and tingling in extremities, lactose intolerance, irregular heart beats, my goodness, you have more symptoms than most of us have had all at once.

Now for the $64 million dollar question, testing. There are pros and cons. First the cons - if you test positive it is on your health record and insurance companies can sometimes be pretty funny about celiac, even though it is totally controllable by diet. So whether it is health or life insurance in the future, it could pop up and be pesky. Pros: you have something tangible to present to family and friends who will often question why you need to eat the way you do and say things like "Oh, you're following that gluten-free fad!" Friends and family can be a bit weird, just like insurance companies. So if you have the piece of paper, you can waive it at them and say, no, my doctor told me I must be gluten free because of my medical condition. You will also know to watch for it in any children you may have as ithere is a herediatry predisposition to develop it. For some (although it doesn't sount like this applies to you) it gives them the motivation to stay on the diet if they are tempted by glutenous goodies or an insistent "friend." If you test positive and decide to have the confirming endoscopy with biopsy they can sometimes find other problems (or give you the all clear) with the scope. But as for the treatment, you are quite correct, the treatment is exactly the same whether it is celiac or gluten intolerance - a gluten free diet.

I have never had any testing since I went gluten free before I knew you could even test for celiac, in an unsuccessful attempt to relieve my psoriatic arthritis, and I was not about to go back on gluten to be tested. This is something else to consider - this is your one chance to be tested without suffering further, since you can have it right away. If you go gluten free and then decide you want the diagnosis you have to go back on gluten for 2-3 months and for most, once you stop eating gluten, consuming it again becomes much more painful and few people make it all the way through the challenge.

Now you could well test negative, either because of the inherent error rate in the testing or because you are gluten intolerant but not celiac. There is really no testing available for gluten intolelrance, because doctors and researchers are only just acknowledging its existence. But with your symptoms you should not let that deter you from trying the diet.

Good luck on your decision making.

[Christine0125]

I'm new to celiacs - still have a lot to learn. I self-diagnosed to some extent realizing that many of my symptoms were linked to celiacs (gas/bloating, nausea, mild headaches, canker sores, mild anemia). I tend to avoid doctors so I did my own trial for about 3 weeks. I wasn't noticing much difference so I started eating gluten again and then headaches started. I realized that I didn't take any tylenol/advil for mild headaches for the 3 weeks I was on the trial. My tummy issues didn't change too much during the trial but I'm guessing that could take more time. I did finally go to my doctor and ask for the celiac bloodwork and just received the positive results. I made an appointment to go see a GI doctor in a couple weeks. From my standpoint I know with a diagnosis I'll be committed to the diet. If there was any unknown in my mind, I'd likely "cheat." I also understand that with a diagnosis they sometimes prescribe steroids to aid healing. Personally I'm relieved to have an answer to all these symptoms.

[SideKick17]

thank you everyone for replying. After doing even more research and looking through this forum and talking to my mother I've decided to get the testing done. Like Christine said Ill be much more dedicated to the diet if i know for a fact I have this.

[Marilyn R]

Let us know how it turns out, and if you have any questions, post them.

Wishing you well!