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No Symptoms?

maxdad

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maxdad Newbie
maxdad
Posted

Hi:

I am new here, and a bit overwhelmed. My son Max was diagnosed today, based on blood tests. He is set up for a biopsy in a few weeks, but the doctor said that based on the results of two tests, he had no doubt that it was positive. Max has type I diabetes, so I knew this was a possibility but it is still a shock.

But after reading through so many of the posts here, it strikes me that Max has no symptoms. None at all. Is this common? He gets a bit crabby now and again, but he is 5 years old. He eats absolutely everything and has not the slightest physical symptom. How can it be that the blood tests show some impact on his body but he is totally fine eating anything? Does that likely mean we have just caught it early before there was any damage? Does it mean he is just asymptomatic (assuming such a thing exists with celiac). Am I clinging to a pipe dream to hope that the blood work was just screwed up, and maybe the reason he has no symptoms is because he doesn't have celiac?

Thanks.

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schmenge Newbie
schmenge
Posted

I was pretty asymptomatic. Didn't feel sick, ate anything, etc. I was diagnosed almost a year ago and now that I have been gluten-free I *do* react when I get glutened. Additionally I am amazed at the number of small things, which I would never have associated with Celiac, have pretty much gone away. Cold sores, middle of the night muscle cramps, hay fever and several other things have improved dramatically or flat gone away. As a kid (I am 49 now) I think I had more cavities than my 7 brothers and sisters put together. Now I suspect that was from Celiac and not getting my calcium.

Perhaps the blood test is wrong. That would certainly be great. But based upon my experience the lack of "traditional" symptoms doesn't mean he does not have the disease.

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Laura--G Rookie
Laura--G
Posted

My son is also a Type 1 Diabetic. His endo tests all her patients for Celiac. Like your son, he tested positive without symptoms other than being cranky. He's a whole different kid now though. The doctor told us that he would have had physical symptoms eventually, but it's better to catch it early. She also said out of her diabetic patients 1 in 10 was positive for Celiac.

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chrissy Collaborator
chrissy
Posted

one of my 3 girls did not have any obvious symptoms.

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maxdad Newbie
maxdad
  • Author
Posted

Thanks. I guess I was hoping to hear that, because he had no symptoms, it was possibly a mistake in the test. But realistically I know that isn't the case. Although I don't have the numbers yet the doctor said that in both of the major blood tests they use, he was very high. Biopsy to be done in a few weeks. Again, thanks. I am sure I will have many questions over the next weeks.

Mitch

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moomama18 Newbie
moomama18
Posted

Mitch - there is also such a thing as Silent Celiacs. Thank g-d you caught it when you did. Even without symptoms showing, damage can be occuring in Max's body. Good luck to you guys and hope you can find help around here.

Michelle

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celiac mom Newbie
celiac mom
Posted

Mitch,

My son was also pretty asymptomatic as far as physical reactions (no pain, diarhea etc) but he was very small for his age and the doctor thankfully did a series of tests and the rest is history. He is now 16, gaining weight and is the right height for his age (at 14 he was not even on the growth chart). He suffered from self-esteem stuff because of his size, so thankfully your son won't suffer that! AFter two years, he says he feels so much better, and I didn't know he ever felt bad. Neither did he, but when gluten is gone, he just has more energy. He does react now to gluten, so he stays far away from the stuff! Good luck-

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  • 1 year later...
Larab1016 Newbie
Larab1016
Posted
I was pretty asymptomatic. Didn't feel sick, ate anything, etc. I was diagnosed almost a year ago and now that I have been gluten-free I *do* react when I get glutened. Additionally I am amazed at the number of small things, which I would never have associated with Celiac, have pretty much gone away. Cold sores, middle of the night muscle cramps, hay fever and several other things have improved dramatically or flat gone away. As a kid (I am 49 now) I think I had more cavities than my 7 brothers and sisters put together. Now I suspect that was from Celiac and not getting my calcium.

Perhaps the blood test is wrong. That would certainly be great. But based upon my experience the lack of "traditional" symptoms doesn't mean he does not have the disease.

I was diagnosed with celiac disease about two months ago. It was an accidental discovery because it was found during an endoscopy for something else that ultimately turned out to be nothing. The biopsy was positive and the blood test also confirmed it. Up until then, I had never had a digestive system problem. I was always proud orf the fact that I could eat anything with no trouble. More importantly, I was a huge consumer of bagels, pasta, pizza, etc. Since I went on a glutten-free diet, I've not had any major problems but my stomach gurgles a bit from time to time. I wonder whether the gurgling is a reaction to not having gluten in my diet? I further wonder, if I am presently not symptomatic, what would be the impact of "cheating" just a little. Are there long term negative effects if you had a slice of pizza once every few weeks? Thus far, I have been absolutely religious in maintaining a gluten-free diet, but, as I said, if I don't experience overt problems, what would be the harm in a little meandering from the straight and narrow. My mother contracted the disease at age 64 (the same age I was diagnosed). The family knew nothing about the disease and she cheated for years. She's now 91! Just wondering.

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sbj Rookie
sbj
Posted

Count me as another silent celiac who was diagnosed while looking for something else entirely. I never had any symptoms and after going gluten-free I don't notice any differences. I haven't cheated yet - I am tempted - but I won't. Even a tiny bit of gluten can trigger an auto-immune response, and that can lead to damage in any number of places. If your auto-immune system is reacting to gluten then something is wrong. Your body is telling you something. You shouldn't tempt fate by eating just a little bit here and there. Stay strong - giving up pizza is not so bad. I just read a post by someone who can't 'eat' at all - everything intravenously now. You wouldn't want to go through that, would you?

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      Thanks this is helpful. Couple of follow -ups- that critical point till it stays silent is age dependent or dependent on continuing to eat gluten. In other words if she is on gluten-free diet can she stay on silent celiac disease forever?    what are the most cost effective yet efficient test to track the inflammation/antibodies and see if gluten-free is working . 
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