Wide Ranging And Changing Symptoms?

[canuckchick]

Hi there,

Following the positive diagnosis of my two younger siblings, I also was tested for Celiac, about 2 months ago. My test results were somewhat inconclusive (low IGA) but I stopped eating gluten and have noticed many positive improvements for it. However, because I didn't have a conclusive diagnosis, I did what I'm sure many of you would have advised against... I went 95% of the way there with the diet. I cheated in little ways when it would be a pain not to (soy sauce), and I was not rigorous about cross contamination in restaurants. Since my symptoms weren't debilitating in the first place (unlike my sister's), this seemed ok. (I know that if I actually have the disease, then this logic is faulty. But this is the problem of inconclusive diagnoses.)

Anyhow, as I have gotten more sensitized, I have become fairly convinced that I'm intolerant to gluten. However, I am also constantly doubting my self-diagnosis. It's so hard to do a controlled test. I seem to have positive dietary response... but am I imagining it? Is it something else?

Part of what is confusing me is that my response seems so inconsistent. So I am wondering if this is normal. One day after a suspected glutening I will get a nasty headache. Another time it's huge bloating and acid indigestion. A third time it's immediate fatigue. This morning I woke to a huge amount of gas after a restless night with crawling itchy skin (I think an ingredient at the thai place got me... probably the fried tofu).

Can anyone tell me whether this would be considered normal? Or do your reactions tend to be consistent when you get glutened (ie you always get a headache, or always get bloated, or whatever). I am doing my best to be more rigorous now. I know all of those symptoms could be related to celiac. But I am also wondering whether I'm just attributing a bunch of unrelated symptoms to a condition that my siblings have but I don't.

Thank you so much...

[*lee-lee*]

i'm curious myself to hear what others have to say about this. before i went gluten-free (which was only a few weeks ago), diarrhea was my major symptom. now when i'm glutened, i mostly just get nauseous like i'm going to puke but nothing happens. it's usually at night so i just go to bed and i'm fine by the morning.

[canuckchick]

I would still love to hear what any of the long-standing Celiacs on this board have to say about this...

thank you!

[jewlesD]

hi there!

After going completely gluten free I found I was more sensitive to even small amounts of gluten, where as before I think i could have tolerated small amounts...the more you go gluten free the more you might react to smaller amounts. I usually have diarrhea after being glutened, but sometimes it comes in other ways, such as tiredness, headache and mouth sores. I dont think you need the same reaction every time to determine if its a reaction to gluten..I also get a very itchy rash, but that only makes an appearance some of the time. I do not think negative blood tests to celiac is conclusive that its not celiac..the real test is going gluten free and seeing how you feel. if you feel better then theres your answer...I have heard so many cases of people testing negative but going gluten free has made their lives so much better! good luck to you!

[babysteps]

I've been gluten-free for 7 months and initially my gluten reactions were a lot stronger, then they got weaker (or I got better at reducing cc), then I had a bad couple weeks at 5 months...so inconsistency sounds normal to me!

Lots of posters seem to notice a return to lesser symptoms at either 9 months or 2 yrs on gluten-free diet. Most popular theory seems to be that initially your system gets much stronger but is not fully healed so has a stronger response, then once your system is *really* healed, it can calm down a little.

For me, the 'menu' of symptoms is long and varied, and basically is everything that went away when I went gluten-free (D, skin itchiness, night sweats, sore joints, eye twitching, restless leg, swollen ankles, crankiness, tired, brain fog, thick skin on hands/feet, and a few more that will come to me soon after I hit "add reply"). On a given glutening, any one or combination can come back. D and skin itchiness are my 2 most common.

[GFinDC]

I don't consider myself a long timer but will spew my thots on you anyway. Well, there is a really big range of symptoms with celiac. Some people don't even have GI symptoms the way I understand it. They find out they have celiac after developing some related autoimmune disease and being tested for that disease. In fact it seems that is one of the reasons it is not recognized quicker by doctors, the symptoms can be so widely varied.

In my own case, I have varying symptoms after being glutened. Last time was a few weeks ago and I was up all night unable to sleep. That's (I think) because of my thyroid condition that kind of went crazy in reaction to the gluten. Yes, I did have the gas and other fun GI things that happen too, but not as bad as in the past before going G.F. An affect I get also is my feet and ankles swell up. Plus the fog moves in and surrounds my brain in dense white opaqueness. Duh. Anyhow, the GI symptoms are not as bad after 9 months but still there. I think they aren't as severe because I am in better shape intestinally to start with. And I generally only have a glutening by accident now, which would be a small amount of gluten, not every day eating lots of bread etc.. Although I think I have figured out that I am sensitive to yeast or sulfites so now beer (gluten-free beer that is) and wine are on my hit list to avoid.

I do believe your body gets more sensitive to gluten after a while. I think this is because you are healed and not in a constant state of fatigue from your body being in anti body overdrive fighting gluten devils. So you feel better to start with and your body reactions are more noticeable/evident. Kind of like shooting a gun in a war zone. During the war its just one more bang, but in peace time it is a shocking sound. You notice it more because you aren't used to it.