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Do Symptoms Wax And Wain?


DucksnPucks

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DucksnPucks Rookie

Hi!

I haven't been diagnosed, but we have very high suspicions that I am probably Celiac, as is my 3 year old son. Let's start with me:

39 year-old male that had a serious illness back in 2001. Doctors called it IBS, but it lasted a good four months. I had lots of D, stomach cramps, loss of appetite, lost about 45 pounds, and EXTREME fatigue. I should probably back up and say that I have selective IgA deficiency, which I know is more prone to autoimmune disorders. So after about four months I began to feel better, but I hadn't really changed my diet. I had just about every test in the book done, including a test for Celiac, all of which turned up negative.

Since the first major episode, I have had smaller episodes on and off for the past several years. The main symptoms are usually the fatigue mixed in with both D and C. The can last anywhere from a couple days to a couple weeks. Weight has remained relatively the same (I have gained most of the weight back after the initial illness). Sometimes the fatigue and D is down right debilitating.

My big question is this, do the symptoms wax and wain like this? I knwo its different for everyone, I just wonder if this is possible/usual for Celiac?

our three year old has been suffering through D for about the past two years, and he also suffers from eczema and nasal allergies as well (so does his older brother). His weight and height is good, though his appetite is not great at times. But for all intent and purposes he seems like a health young man.

Thank you all in advance for any information you can share1 Bless you all!


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psawyer Proficient

My own symptoms went from bad to worse back to bad and so forth for years. I had good days, and I had bad days. Once I had a firm diagnosis, and went gluten-free, my bad days became fewer and fewer until there were none.

Korwyn Explorer

Hi!

I haven't been diagnosed, but we have very high suspicions that I am probably Celiac, as is my 3 year old son. Let's start with me:

39 year-old male that had a serious illness back in 2001. Doctors called it IBS, but it lasted a good four months. I had lots of D, stomach cramps, loss of appetite, lost about 45 pounds, and EXTREME fatigue. I should probably back up and say that I have selective IgA deficiency, which I know is more prone to autoimmune disorders. So after about four months I began to feel better, but I hadn't really changed my diet. I had just about every test in the book done, including a test for Celiac, all of which turned up negative.

Since the first major episode, I have had smaller episodes on and off for the past several years. The main symptoms are usually the fatigue mixed in with both D and C. The can last anywhere from a couple days to a couple weeks. Weight has remained relatively the same (I have gained most of the weight back after the initial illness). Sometimes the fatigue and D is down right debilitating.

My big question is this, do the symptoms wax and wain like this? I knwo its different for everyone, I just wonder if this is possible/usual for Celiac?

our three year old has been suffering through D for about the past two years, and he also suffers from eczema and nasal allergies as well (so does his older brother). His weight and height is good, though his appetite is not great at times. But for all intent and purposes he seems like a health young man.

Thank you all in advance for any information you can share1 Bless you all!

Classic symptoms for both of you, and yes they come and go. I had good times and bad times as well (days/weeks/months), gradually more bad days as I was getting sicker over the years, then eventually when my celiac disease kicked into full gear after a serious illness I didn't have any more good days until I went gluten-free/CF/SF. I'm getting better and now I have more good days than bad days and I know what good days are! :)

ravenwoodglass Mentor

Yes many of us have had symptoms that come and go for a while before they become a daily struggle. I have been symptomatic since childhood but it wasn't until the last 10 years prediagnosis that they became daily and neverending.

I should add that if you are IGA deficient that can cause a false negative on the blood tests.

sandsurfgirl Collaborator

Add me to the waxing and waning my entire life list. I know in my heart that I've always had this condition, but at times it would seem to go away and I would go in denial and think that it truly had gone away.

After having babies, it came back and just did not go away. Not only the gastro issues, but I started having constant chronic sinus infections and allergy problems, even though my allergies are quite mild when tested.

I read that childhood celiac disease can go into periods of remission, and then surface again. Traumatic or stressful events, other illnesses like flu, and things like pregnancy for women can bring it on again if it's in remission.

I was always on the average to tall average size in height as a kid. Then all of a sudden in about 5th or 6th grade I just completely stopped growing. The doctors were puzzled but didn't follow it further. I read that childhood celiac can cause that stunted growth and end up in short stature for an adult. I ended up being 4'11" tall, and NOBODY on either side of my family is that short. When I got diagnosed recently, and then I read that it all made sense finally. And I cried my eyes out.

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    • trents
      Yes, it does. And joint pain is another celiac symptom that is now well-recognized. 
    • ThomasA55
      Does my iron loss sound like celiac to you?
    • trents
      Being as how you are largely asymptomatic, I would certainly advise undertaking a gluten challenge in order to get formal testing for celiac disease. We have many forum participants who become violently ill when they undertake a gluten challenge and they therefore can't carry through with it. That doesn't seem to be the case with you. The reason I think it is important for you to get tested is that many or most people who don't have a formal diagnosis find it difficult to be consistent with the gluten-free diet. They find ways to rationalize that their symptoms are due to something other than celiac disease . . . especially when it becomes socially limiting.  The other factor here is by being inconsistent with the gluten free diet, assuming you do have celiac disease, you are likely causing slow, incremental damage to your gut, even though you are largely asymptomatic. It can take years for that damage to get to the point where it results in spinoff health problems. Concerning genetic testing, it can't be used for diagnosis, at least not definitively. Somewhere between 30 and 40% of the general population will have one or both of the two genes known to be associated with the development of active celiac disease. Yet, only about 1% of the general population will develop active celiac disease. But the genetic testing can be used as a rule out for celiac disease if you don't have either gene. But even so, that doesn't eliminate the possibility of having NCGS (Non Celiac Gluten Sensitivity).
    • ThomasA55
    • trents
      Welcome to the celiac.com community, @ThomasA55! Before I give my opinion on your question about whether or not you should undergo a gluten challenge, I would like to know how you react when you get a good dose of gluten? Are you largely asymptomatic or do you experience significant illness such as nausea and diarrhea? You mentioned intermittent joint pain before you began experimenting with a low gluten diet. Anything else?
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