Re-Introducing Gluten....could It Be Celiacs?

[tallchik77]

Hi everyone! thanks for reading. Okay, here goes. I have been looking all over the web for something specific to this and haven't come up with anything. So, thats how this post started back in december, I developed a lump on my head and have had a non-stop, debilitating headache since. docs can't figure it out. I went back to my gp two weeks ago and she noticed that my thyroid was inlarged and asked if i could go gluten free for two weeks while she ran some blood panels. I said sure. now, if you are squemish, you may stop reading here. so, after the first couple of days, my poop started getting wierd. there was a ton of it, it filled the toilet and it was really loose, but not like any diarreah i have ever had before. after 5 days, my blood work came back saying that my thyroid was normal but she is sending my to an endocrinologist anyhow. on this 5th day, i ate a bite of my daughters muffin and had diareah and bloating within a couple of hours. also, i had lost 4 lbs. after about a week and a half i realized that there where a couple of food items i was eating that were hiding gluten but i obviously was not noticing that. i also have lost now 2 inches off my waistline and my face isn't puffy. i'm seeing a gi on monday and i know that in order to have a more accurate celiac test i need to have gluten in my system so i have been eating bread the last couple of days and i am MISERABLE! constipation, bloating, headache blah blah blah. would these symptoms be normal for someone who does not have celiacs? and after such a short time? I would like to not sound like a complete idiot when i see the gi on monday. Oh, also, i understand that the lump on my head is probably not relevant but that is where this journey began for me. thank you for reading!

[mushroom]

Hello, and welcome. I can't help but wonder why your GP wanted you to stop eating gluten?? The surest way to screw up any celiac testing results is to stop eating gluten. You not only need gluten in your system, you need to have been continuously eating gluten for the testing to be valid. Have you in fact been off gluten for two weeks? You might have a chance of a valid test result, but most likely not, unless you go back on gluten for another two months. Why am I saying this? Because if you withdraw gluten the antibodies go off duty because they are no longer needed, and the blood test measures the level of antibodies. Now sure, some stronger antibodies come back on duty in frustration when gluten is reintroduced, but usually not enough of them to tip the testing scale. So while you are miserable, it is just because they have used a few AK47's instead of hundreds of pistols, and each AK47 only counts the same as each pistol in the testing. The tests use ranges in their scores (e.g, >5 is negative, 6-10 is normal, <11 is positive), but they are not measuring whether they are pistols or AK47's And you are going to feel a lot worse from an AK47 then from a pistol. Unfortunately, two weeks seems to be the outside time period for testing to still have a chance of being valid, otherwise the clock starts to run all over again, i.e., it is reset to zero. You can still go ahead with the testing, and if it is positive you will be one of the lucky ones. If it is negative, you will have learned nothing about your celiac status and would need to start the two-month clock running again.

So to your question, if gluten were not a problem for you,no, the symptoms you are experiencing would not be normal and they are definitely suggestive of a gluten problem. However, you could still experience those symptoms and not test positive for celiac disease with valid testing Not everyone with all the symptoms tests positive for celiac; firstly, there are false negatives on the testing, and secondly some people have what is called non-celiac gluten intolerance, a gluten sensitivity that feels like celiac but does not produce the antibodies and does not produce the damage in the small intestine. Much research is now being directed at this issue because formerly doctors would have just told you, you are not celiac, go forth and eat gluten!! Now they are recognizing this as a separate problem.

You see now my frustration with your doctor having you go gluten free. Because now you may still not know which category you belong in without further gluten-eating.

I am sorry to be the bearer of bad tidings Also sorry about the lump on your head and headaches. Is the "lump" perhaps a swollen node? Headaches are not uncommon with celiac/gluten intolerance so it still could be related.

Stay in touch and let us know how things turn out for you. I wish you health. And ask any further questions you wish.

[tallchik77]

thank you for your response! I am thinking that she asked me to go off gluten because of the thyroid. from what i have read, thyroidism and celiacs go hand in hand. if you have one, you are very likely to have the other. also, i was getting very frustrated with the lump on my head! which, the headache did go away after taking gluten out. i actually probably did not take gluten out of my diet completely. i didn't realize that my coffee creamer and crumbled feta cheese and rice crispies had gluten. i did try to be concsious of gluten products so i'm hoping that the little i had was enough. i started eating definite gluten after about 8-9 days knowing that i would have to have gluten to be tested. i am trying to eat it 3 times a day in the form of toast. trying being the key word here. this morning it made me vomit. well, i will keep you posted. thanks again!