Long Term Pre-diagnosis Symptons

[Riayn]

After suffering for the past 10 years or so with diarrhea, wind, nausea, cramping etc, I am getting my doctors to do a blood test for celiac's on Monday. I was diagnosed with IBS about 5 years ago, but have had no tests done to rule out any other GI diseases.

My question is for those of you already with a diagnosis. Back before going gluten-free, did your symptoms range in severity? I can have really good weeks with barely any diarrhea or pain - the wind is always there, and then cycle onto really bad weeks. I also find that my symptoms increase in the week before my period - it is a handy warning system.

Thanks

[nmw]

Funny you should ask, as I was just thinking about asking the same thing. My symptoms were very cyclic (though not so much gastrointestinal as emotional/neurological) prior to diagnosis. They seemed to follow patterns of stress and hormones, so pre-menstrual times were worst. I didn't figure our my gluten intolerance until the symptoms hung on far beyond the time in my cycle when they usually faded out.

My doc & I figured I was starting premenopause, and so I never suspected anything else. Since going gluten-free, my symptoms I thought were hormone-related (hot flashes, bloating, irritability and anxiety), have all but disappeared!

I hope you get some clarity from your blood test. Make sure you continue to consume gluten until you have you blood done otherwise your results will be affected.

[ravenwoodglass]

For a long time my GI problems seem to also come around my periods with an additional problem with depression at the same time. Then gradually the GI problems became a daily occurance and for the last 5 years of my illness it was a nightly bout with 2 to 3 hours of gut wrenching pain. I only wish they had tested me or I had tried the diet when my celiac GI problems were off and on. Much of the permenant damage to my other organs would not have been done

[Kaycee]

Since going gluten-free, my symptoms I thought were hormone-related (hot flashes, bloating, irritability and anxiety), have all but disappeared!

Yes and my symtoms were cyclic as in that just before and through my period they were worse.

And nmw funny that you should mention the hot flashes, I was having them as well, espeically after eating bread for lunch, and being about 45 thought well that is the start of menopause, but my periods were still arriving like clockwork, so I figured it was not that.

The flashes lessened when I dieted as naturally I was eaing less gluten. They eventually disappeared when I was totally gluten free. amazing. Now that I am 49, my periods are still arriving nearly always on time, and no flashes yet, but I guess they will arrive soon, thought I might've been having them over the last few days, but summer is here so I wouldn't be too sure about it. I am getting hot just thinking about them.

Cathy

[jerseyangel]

Yes and my symtoms were cyclic as in that just before and through my period they were worse.

And nmw funny that you should mention the hot flashes, I was having them as well, espeically after eating bread for lunch, and being about 45 thought well that is the start of menopause, but my periods were still arriving like clockwork, so I figured it was not that.

The flashes lessened when I dieted as naturally I was eaing less gluten. They eventually disappeared when I was totally gluten free. amazing. Now that I am 49, my periods are still arriving nearly always on time, and no flashes yet, but I guess they will arrive soon, thought I might've been having them over the last few days, but summer is here so I wouldn't be too sure about it. I am getting hot just thinking about them.

Cathy

Wow--this was my experience as well--and I could never quite figure it out! My night sweats would happen right around the start of my period all through my 30's and most of my 40's. I naturally thought that they were just hormone related.

I had a procedure (not a hysterectomy) done in 04 that greatly reduced the large blood loss I was having every month. Now, at 51, I have a few hot flashes here and there, but not the drenching night sweats I used to. Blood tests confirm that I'm on the borderline of menopause. I was diagnosed and went gluten-free a year after the procedure.

So many times, looking back over some of these things, I find it hard to figure out what was actually what

[Guest nini]

many years before my dx, I complained to a gyn. dr. that every month before my period the diarrhea got really bad (I had it all the time but it would be unbearable around my period) and he told me that most women get diarrhea around their periods that it's NORMAL

since going gluten-free and not having "D" constantly I do still notice loose bm's around the time of my period, but NOT "D"... so hormones could def. play a role in it, but the "D" is not normal by any stretch of the imagination.

[snapple]

My symptoms were cyclical in nature as well. It always started about a week before my period was supposed to arrive, become aggonizingly painful during, and then taper off. It got to the point that I couldn't stand up straight the bloating, gas, and constipation were so bad. When these symptoms started making themselves known at other times of the month I started having visions of spending my life bent over in pain. I talked to my dr, who didn't know what it was, but was pretty sure it wasn't celiac because the symptoms were cyclical, but did say that if her recommendations didn't work, then try the gluten free diet. Needless to say, her recommendations didn't work, and I will celebrate 1 year gluten-free in about a week.

I am happy to report that the symptoms lessened and I am back to the regular period issues I have always had. My husband no longer calls me Quiasimodo (hunchback) when I get my period. That is a blessing in and of itself!

[nmw]

Yes - D before your period is normal for some women. If you have given birth, think about how the things that happen with your body JUST before you start your period are very similar to what happens when you are moving into early labor, including the D or loose stools.

Now that I know I am GI, it is hard to know what weirdness with my body or even overt symptoms of whatever may be going on is celiac disease/GI related or really something else. Sometimes it's easy to blame everything on celiac disease/GI, so extra insight and knowledge of one's body - which typically comes with the self-education necessary to manage celiac disease/GI - is a must!

[Kaycee]

Now that I know I am GI, it is hard to know what weirdness with my body or even overt symptoms of whatever may be going on is celiac disease/GI related or really something else. Sometimes it's easy to blame everything on celiac disease/GI, so extra insight and knowledge of one's body - which typically comes with the self-education necessary to manage celiac disease/GI - is a must!

Yes mmw, we all need education on how to manage coeliac disease, and like you say it is usually self-education. But that is not always the best way to learn for some. For me I have figured it out with a lot of help and support from this site. THANK YOU EVERYONE.

I know I am going off topic here, but there seems to be symptoms later on in the diet as well, that could be gluten related or attributed to a number of other things. Finding out I had coeliac was the easy bit, sticking to the diet was fairly easy, but there was still something else I had to figure out that was bothering me, and that was the hard bit.

My biggest step forward was realising that I could not blame gluten on all my woes, though it would've been nice if it was just that, and that I had to consider I might be having problems with other major food allergens. So I eliminated all the usual culprits for a few months, probably two, unfortunately to no real avail, and realised it had to be something apart from them or gluten, as my diet was very basic. I then considered it could be the water I was drinking at work from the zip that did not agree with me. So I ditched that source of water and hey presto the diarheoa went, bearing in mind that I had not introduced back the allergen products. So this gave me the grounding base to start adding in peanuts, soy, dairy etc. Finding that level was hard, but it was so essential so that I could build up my diet again, and know for sure if something was not right for me. Through all this, I found peanuts are not for me, and dairy is fine which I am so thankful about, but soy could be a problem along with quite a few legumes, so I only have minimal amounts of them, but definately no peanuts. Olive oil is my choice of oil, or even canola. But I still have to test the soy theory a bit more, but there is no rush, I am happy with my diet as it is now.

But now I have been 3 months diarhoea free, so Iam so rapt.

Sorry to rant, but I felt I had to because I am feeling good.

Cathy