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Intermittant Symptoms?

grey144

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grey144 Newbie
grey144
Posted

Hi all,

Question from a newbie - Can symtoms be intermittent? I would think that the severity of symptoms could be intermittant, as I understand celiac disease, depending on the amount of gluten consumed. But can symptoms come and go entirely? My problem is I (or my mds) never thought about celiac disease/gluten so I never paid any attention to whether there was anything food-related to incidence.

I hit on the celiac disease possibility when trying to figure out why I have a B12 deficiency - once my rheumatologist had me tested for pernicious anaemia and the test came back negative, he told me I was just stressed, and didn't even want to treat the b12 deficiency. Granted, I am stressed, but...

About a year and a half ago, I had a bout of really severe fatigue and muscle/joint pain, coupled with ataxia and various neuropathies, and a B12 deficiency. I saw a neurologist and rheumatologists, had a million tests, and all they could find was the B12 deficiency. Symptoms eventually improved, but still daily (and nightly) pain and fatigue (milder), as well as constant upset stomach, "urpiness", and frequent nausea and various of the GI-stool symptoms( all started about the same time, as far as I can tell). I also had a really strange, ITCHY, blistery rash for a year or so on my elbows that's pretty much gone now; treated by topical steroids and antibiotics.

But my symptoms aren't always severe or incapcitating - or present. Looking at the big list of symptoms for celiac disease, I have about 30 of them, or have had at one point or another, but may or may not have them now. They've led to me being tested for everything from MS to diabetes. (all negative). Only test that's ever shown anything is the B12 (never explained). I'm being treated for acid-reflux now and my gp. thinks that most of my GI symptoms could be explain by acid reflux.

My m.d. just ordered the TTg test, and I'm waiting for the results. But I understand from reading that if celiac disease isn't very severe, and there isn't yet damage to the intestine, it might come back positive even if I did have celiac disease. I'm trying to decide if celiac disease is a possibility, and whether I should push for more tests if it does come back negative. If I were to go gluten-free, I understand it'd be harder to get an accurate diagnosis.

I hope that some of the more experienced on the board can give me some advice on how best to explore if celiac disease is a possibility for me.

Thank you! And I hope I didn't write too much or ask the wrong kind of question; please forgive the newbie if I did.

Thanks again,

kate

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tarnalberry Community Regular
tarnalberry
Posted

My symptoms have never been severe enough to keep me out of work or particularly at home for very long. (I don't get the bad diarrhea...) And they seemed to bother me more at some times than others. I used to think they were intermittent as well, but after going gluten-free, I realized that they were less intermittent than I thought (though not always as bad as on the day before).

kalo Rookie
kalo
Posted

Hi Kate. I've just been learning about this for under a month. Everything I've read leads me to believe you SHOULD get tested for it. All your symptoms point towards celiac disease. I don't know about intermittent but my doctor did ask me if I ever had times where I felt better. The answer was yes, although very rare. That was before he mentioned he thought I should be tested for this. Anyways, do a search for celiac testing and you will find enterolabs. They have a non invasive simple stool test that is VERY sensitive and accurate and doesn't matter whether you are gluten free or not. Expensive test (if you do the full panel like I did) but worth it. You might also try going gluten free and see how you do after a few months. I'm still waiting for my test results. Hugs, Carol B

celiac3270 Collaborator
celiac3270
Posted

Well, all I know about intermittant symptoms is that when you hit puberty symptoms can decrease in severity regardless of gluten intake or go away entirely. This is why doctors used to think that you grew out of celiac disease.

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