Can Symptoms Come And Go?

[Guest Kathy Ann]

But can symptoms come and go? At very specific stretches of time in my life I had definite gluten symptoms ranging from gastro to neurological. But they are spaced out throughout my life between other stretches of time where my health appeared perfectly normal.

Have any of you noticed a pattern like this? Any idea what it means or why it happens?

[Kaycee]

The more I learn about this disease the more interesting it becomes. As I continue to unravel my medical history, I can now see many times when I had very distinct symptoms of unrecognized gluten intolerance.

But can symptoms come and go? At very specific stretches of time in my life I had definite gluten symptoms ranging from gastro to neurological. But they are spaced out throughout my life between other stretches of time where my health appeared perfectly normal.

Have any of you noticed a pattern like this? Any idea what it means or why it happens?

Kathy Ann,

I do not know the answer, but I have had a life time of symptoms, nothing that was too disturbing, but when I think about it, they all pointed to coeliac.

I always remember that I had more than my fair share of stomach bugs as a child.

My nails have always been brittle, I have always had low iron levels when pregnant. It was even commented on with two of my pregnancies that the placenta was quite small, and of course the question was, do you smoke, and luckily I could say no. I don't know why they would've been small, but the babies weren't they were all nearly over 8lbs.

Before being gluten free, I would not say there were times when I felt better than at other times, as I always thought throughout that I was feeling fine. I could still get out and about and if I needed to run, I still could do it. I thought I was fit and healthy then.

But now in my late 40's just prior to diagnosis, there had been a steady decline in my health. More aches and pains, a lot of stomach problems etc etc. I could at that stage say I wasn't feeling very well. But I was still doing lots of walking and working full time and working around my problems, and I was even telling my walking buddy that I was feeling more fit in my forties than in my 20's and that was before diagnosis.

But once I found out what it was and by following the diet, I do feel better, but there has not been a lot of differnce in my fitness levels, and I feel no less tired than I did before I went gluten free. I guess I have been lucky that even though I have been diagnosed quite late, I have not got any other major problems that can be associated with coeliac.

Cathy

[codetalker]

I would have to say that the outward, visible symptoms can vary, sometimes quite dramatically. At the same time, the internal, non-visible damage continues. Consider:

I first had symptoms as a baby when solid food was introduced. I was eventually DX’d at Johns-Hopkins. The DX was Celiac Baby, which was common in the early 50’s. The expectation was that I would outgrow the condition. By age 4, the symptoms had apparently subsided to the point that doctors at Johns-Hopkins were satisfied that I no longer had the Celiac Baby condition. They put me back on a normal diet. There is no reason to think they would have done this if the symptoms were still present.

I remember eating wheat, rye and oats during my early childhood without problems. I have distinct memories of hating to eat barley. I remember always getting a “different kind” of stomach ache from barley. Malted chocolate balls were a favorite of mine as a kid but I remember always getting gas, bloating and the aforementioned stomach ache from them. The latter tell me that I still did have celiac disease although neither my parents nor any doctors managed to put two and two together and get four.

As a teenager I ate like a horse but was still always underweight. It was not uncommon to go out with friends and eat a large pizza and drink a pitcher of beer all by myself. The point here is obvious. On one hand, there were no symptoms (except from barley). On the other, there was obviously significant internal damage. Why else could I eat huge quantities of food and still be underweight.

Symptoms did return in my early to mid-20’s. My parents had never told me about celiac disease because, as they explained it, they had not wanted me to be a picky eater as a kid and use celiac disease as an excuse not to eat. As a result, I had no base from which to understand the growing number of symptoms.

The symptoms crossed the spectrum. We all know what they are. Doctors constantly dismissed them. Being underweight (despite eating vast quantities of food) was “my normal body weight”. Gas, bloating, etc., etc. when eating wheat, rye and barley was IBS due to stress. Bone and joint problems and abnormalities were due to “an active lifestyle”. Breaks and fractures were “part of life”. A positive test for osteoporosis was dismissed because I was “too young to have it”.

Best of all, constant complaints and doctor visits over almost 30 years was hypochondria. It was suggested by one doctor that I consider a therapist. One reason for this can be explained by one situation in particular. I found by experience that eating dinner rolls at home gave me gas, bloating, etc. Eating them while mellowed out on a SCUBA trip to the Caribbean with my friends produced little, if any, symptoms. Tell this to any doctor and they will consider you a head case. The point though is that the severity of symptoms did vary in association with what I assume was emotional state: stressed out vs. mellow.

Bottom line, I would conclude two things. Outward, visible symptoms can vary and sometimes, in some celiacs, do vary. Internal, non-visible damage is constant when a celiac is not on a gluten-free diet. I am 55 now and reaping the legacy of living most of life eating gluten. I strongly recommend staying gluten-free regardless of visible symptoms.

[i canary]

I've had the same pattern. My outward symptoms came and went, but now that I am 47 I realize I had celiac disease all along. Probably because of this pattern I had a hard time being diagnosed. I too was treated like a "head" case. If I had a dollar for everytime I heard "There is nothing wrong with you, go home," I would be a rich woman. By the time I hit my 40's thats when I started having all bad days.

The more I learn about this disease the more interesting it becomes. As I continue to unravel my medical history, I can now see many times when I had very distinct symptoms of unrecognized gluten intolerance.

But can symptoms come and go? At very specific stretches of time in my life I had definite gluten symptoms ranging from gastro to neurological. But they are spaced out throughout my life between other stretches of time where my health appeared perfectly normal.

Have any of you noticed a pattern like this? Any idea what it means or why it happens?

[Guest nini]

I've had symptoms all my life, sometimes they were worse than others, sometimes I was functional and ignored the symptoms... I was very skinny as a child and a teenager (except for the poochy belly which my mom always kept yelling at me to suck in my gut ) I could never tolerate rye, thought I was just allergic to it, malt vinegar and malted milk balls always made me "urpy"

I have read about some kids and teenagers going through a "honeymoon phase" where no symptoms of Celiac are visible at all but it doesn't mean that intestinal damage isn't still being done.

With me when I reached my early 20's my health gradually started to decline and by the time I was in my early 30's my health was in a rapid descent... I think my years of a high gluten diet finally caught up with me! (I think the symptoms really started getting bad after having Mono in my early 20's...)

[jerseyangel]

My symptoms have been evident since after the birth of my second child, 22 years ago. Looking back to childhood, there were signs, even then. I can remember sitting in school and feeling like I was going to throw up. I would squeeze my fingernails into my fist or bite my lip to try and distract myself from it. I went home for lunch all during elem. school and often had a stomachache after eating my sandwich--everyone thought it was me being sensitive.

There were also times where I'd get lightheaded and have to leave church--go sit outside. No one ever took these things serious, and as a kid, it wasn't really encouraged to complain.

The years between about 16 and 24 were the most symptom free I've ever been. I will note here that I smoked cigarettes all during this time--quit when I became pregnant with my first son. I've heard that smoking somehow surpresses the symptoms in some, and then it's possible that it was just the "teenage honeymoon" phase we've all heard about.

It is interesting to look back and have an explanation that finally makes sense.

[dionnek]

wow, I've never heard of this "teenage honeymoon" thing (I'm still new to this), but that is exactly what happened to me! I had unexplained dizzyness/blacking out spells starting at the age of 13, with severe anemia (no amount of iron helped) for several years, then things got better in high school but developed wierd rash on my shins and top of my hands (eczema? they didn't know). All through college I was fine and then about 6 or 7 years ago (age of 26 or 27), I started having new problems. They continued to get progressivly worse after having my first child 26 months ago. I went to 9 drs who all said there was definitely something wrong with me, but none of them could figure it out. Finally, i went to a GI and he tested for celiac right away and I was positive. It is nice to finally know (that I'm not just imagining it!), but boy, I long for those old college days where I could eat whatever I wanted and still exercise and feel good!

[Marlene]

Symptoms definitely do come and go -- even now after being gluten free for 5 months I have my ups and downs. I too have had times, looking back, where I was fine. Then for a while symptoms would flare up, go away, and come back a few months later. I think that is what makes it so hard to diagnose. Even 4 years ago when things really kicked into high gear for me, it started with 6 weeks of diarrhea after every meal. After a while, this got better although it never went back to being what it should. One thing I find that really makes symptoms flare up is stress -- either emotional or physical.

Marlene

[KaitiUSA]

They can come and go at any point in life. I didn't have symptoms for years and it was doing damage to me. Some people never get symptoms while others are ultra sensitive.

[Guest Kathy Ann]

Thanks everybody!

[kevsmom]

About 6 years ago I had D for about one month, several times a day. I went to the dr., and had a colonoscopy - nothing showed up. It went away, and everything was fine for about 2 years, and then the same thing happened again.

1 1/2 years ago it started again. this time it was so bad I was going 20 - 30 times a day, and I lost about 30 lbs. (that part I didn't mind ) . I got bruises all over my body, and all of my bloodwork was out of whack. I was sent to a Hematologist who told me that my Protime was so bad that I needed to stop taking Coumidin (a blood thinner) immediately. (I don't take Coumidin). I ended up in the hospital with a nose bleed that wouldn't stop after 4 hours). I was not retaining Vitamin K which helps clot the blood. They took a blood test to see if I had Celiac - the numbers were off the chart.

It was noted in my family history that my brother has had Celiac for many years. It makes you wonder why this wasn't the first thing they checked for. I didn't suggest it because I didn't want to know.