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After Reading Here Nearly Every Spare Moment For Weeks


Breila

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Breila Explorer

Not sure if that title got the point of my post across, LOL.

Okay, so my son was diagnosed celiac recently after 3 years of me suspecting it. He had "classic" celiac symptoms, but they were relatively mild and many were the long term variety, ie. growth issues, etc.

So I've decided that we will get the whole family the blood work done at a minimum, given the prevalence of "silent" celiac. To my knowledge, neither my husband, me, or my other two children have shown classic celiac signs.

After reading here about celiac symptoms though, I'm really starting to wonder about myself though, and I'm trying to decide if my thought process is valid or if I'm just being one of those paranoid people that diagnoses themselves on the internet, LOL.

Among my "symptoms":

-I've always had a "nervous" stomach; gas, bloating, loose stools occasionally, acid reflux, general "uncomfortable" feeling after eating. It's come and gone over the years and I've always attributed it to stress, as have my doctors.

-I have a history of migraines and severe headaches, again, always attributed to stress.

-I definitely have tendencies of ADHD, my parents were even told by teachers that I was ADD as a child, but I've never been officially diagnosed, and I performed well in school, so my parents never made an issue of it

-I have really bad teeth despite brushing well and regularly and flossing. My teeth have always tended on the yellow side of shades with lots of white spots and I have more fillings than I can calculate right now.

-I have occasional rashes, and though they don't look like the DH in the pictures I've seen (my bumps don't usually blister), they itch like crazy and seem very random.

-I do have some signs of malnutrition despite eating a relatively healthy diet, I border on anemic, my finger and toe nails split and peel horribly.

Anyway, I'm not really sure if I'm looking for input, backup, or whatever, LOL. All of the above would work, or feel free to tell me that I may be overreacting, LOL. I actually had a blood draw today for the celiac panel, I should know something from that next week or so, and I'm thinking that even if the tests aren't negative, I may give gluten-free a try for myself. Heck, I'm already buying all the stuff, it really would just be a matter of cutting out a few of my "treats" and restaurant favorites at this point.


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Lisa Mentor
Not sure if that title got the point of my post across, LOL.

Okay, so my son was diagnosed celiac recently after 3 years of me suspecting it. He had "classic" celiac symptoms, but they were relatively mild and many were the long term variety, ie. growth issues, etc.

So I've decided that we will get the whole family the blood work done at a minimum, given the prevalence of "silent" celiac. To my knowledge, neither my husband, me, or my other two children have shown classic celiac signs.

After reading here about celiac symptoms though, I'm really starting to wonder about myself though, and I'm trying to decide if my thought process is valid or if I'm just being one of those paranoid people that diagnoses themselves on the internet, LOL.

Among my "symptoms":

-I've always had a "nervous" stomach; gas, bloating, loose stools occasionally, acid reflux, general "uncomfortable" feeling after eating. It's come and gone over the years and I've always attributed it to stress, as have my doctors.

-I have a history of migraines and severe headaches, again, always attributed to stress.

-I definitely have tendencies of ADHD, my parents were even told by teachers that I was ADD as a child, but I've never been officially diagnosed, and I performed well in school, so my parents never made an issue of it

-I have really bad teeth despite brushing well and regularly and flossing. My teeth have always tended on the yellow side of shades with lots of white spots and I have more fillings than I can calculate right now.

-I have occasional rashes, and though they don't look like the DH in the pictures I've seen (my bumps don't usually blister), they itch like crazy and seem very random.

-I do have some signs of malnutrition despite eating a relatively healthy diet, I border on anemic, my finger and toe nails split and peel horribly.

Anyway, I'm not really sure if I'm looking for input, backup, or whatever, LOL. All of the above would work, or feel free to tell me that I may be overreacting, LOL. I actually had a blood draw today for the celiac panel, I should know something from that next week or so, and I'm thinking that even if the tests aren't negative, I may give gluten-free a try for myself. Heck, I'm already buying all the stuff, it really would just be a matter of cutting out a few of my "treats" and restaurant favorites at this point.

Hi Amy,

Celiac, as you may know, can be an inherited disease. You may not have full symptomatic celiac, but celiac just the same or at least a gluten intolerance. You certainly have many of the 200 symptoms and I don't think, as you describe, your symptoms are silent and all can be attribuited to Celiac.

Many, many of us have been wrongly diagnosed over decades only to settle on Celiac. And, on the gluten free diet, other symptoms have cleared. I, as well as others, have been diagnosed with cronic colitis and IBS over thirty years.

I think that you are wise to be tested. But, please do not go gluten free until you choose no further testing.

Ursa Major Collaborator

It seems to me that you have many obvious celiac disease symptoms, and they aren't so 'silent' in my opinion.

If you don't care about an 'official' diagnosis, you could just start eating gluten-free, and I bet most, if not all, of those symptoms will go away. But if you want to have a biopsy, you will need to eat gluten until afterwards. Otherwise it will come up negative, even if you have celiac disease.

Besides, very few people with celiac disease have classic symptoms, that is why the majority of people with celiac disease never get diagnosed, because most doctors don't recognize celiac disease these days, they all look for diarrhea and weight loss. And if somebody has more vague symptoms, like you, it is chalked up to 'stress' or IBS.

You sound exactly like me for years and years. Until finally three summers ago I tried a bowel cleanse, which put me over the edge, and I finally had the 'classic' symptom of severe, watery D for six months straight.

Still, my doctor did all kinds of tests, but didn't test for celiac disease (at that time I didn't even know what celiac disease was, so didn't ask to be tested). When finally I figured it out on my own, her excuse was that since I was overweight, she didn't think I could have celiac disease.

I had to educate her, telling her that at least 40% of people with celiac disease were overweight, and that unexplained weight gain can also be a symptom of malnutrition.

Breila Explorer

Yeah, I kind of meant that maybe "silent" celiac perhaps isn't as silent as we think, that maybe there are signs that even those who are aware of the condition might not recognize as possible celiac. Even after having done the basic research, I never would have considered that my issues might be related to celiac or gluten, mostly b/c they come and go and most of the time I can link symptoms to stressful events. Of course, I'm raising 3 boys, I think my life is one stressful event right now, LOL. It wasn't until reading here that I put things together that it might be an issue, yk?

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    • trents
      It would be interesting to see if you were tested again for blood antibodies after abandoning the gluten free diet for several weeks to a few months what the results would be. Don't misunderstand me. I'm not necessarily suggesting you do this but it is an option to think about. I guess I'm saying there is a question in my mind as to whether you actually ever had celiac disease. As I said above, the blood antibody testing can yield false positives. And it is also true that celiac-like symptoms can be produced by other medical conditions.
    • numike
      Thank you for the reply In the early 2000's I did not have the endoscopy nor the biopsy I do not have those initial records I have only consulted a GI drs in the USA 
    • trents
      Welcome to the forum, @numike! We sometimes get reports like yours from community members who believe their celiac disease has "gone away." We think there can sometimes be cases of remission but not long term healing and that continued consumption of gluten will eventually result in a relapse. This is the state of our knowledge at this point but there is still a lot we don't know and celiac disease continues to surprise us with new findings on a frequent basis. So, we would not advise you to abandon a strict gluten-free diet. Perhaps you can draw consolation from the fact that at the present time you seem to be able to consume gluten without consequences when in situations where you do not have the option to eat gluten-free. But I would advise you to not generalize your recent experience such that you throw caution to the wind. But I want to go back to what you said about being diagnosed by blood test in the early 2000's. Did you not also have that confirmed with an endoscopy and biopsy of the small bowel lining? Normally, a celiac disease diagnosis is not concluded based on a blood test alone because there can be false positives. What kind of doctor did this testing? Was it done in the U.S. or overseas? In the last few years, it has become common in the U.K. to grant a celiac diagnosis from blood testing alone if the antibody test scores are 10x normal or greater. But that practice has not caught on in the U.S. yet and was not in place internationally in the early 2000's. Do you have a record of the tests that were done, the scores and also the reference ranges for negative vs. positive for the tests?
    • numike
      Check out this celiac story  I was diagnosed early 2000s with the blood test  since then I have for the most part maintained a gluten-free diet  Recently (August 2025) I drove from Southern Illinois to Lake Erie Ohio On the drive back I was extremely hungry and I had a coupon at a hamburger chain and I stopped and forgot to request gluten-free bun etc and quickly consumed two hamburgers. I promptly ate both of them and had absolutely no problem since then I've been eating plenty of gluten  Is my celiac gone?  Insert: No, celiac disease cannot just end because there is no cure for it; however, a strict, lifelong gluten-free diet allows the small intestine to heal and symptoms to go away. To manage the condition effectively, you must strictly avoid all sources of gluten, including wheat, barley, and rye, which are common in the American diet. Sticking to the diet can lead to significant symptom improvement and intestinal healing, but it requires ongoing commitment and monitoring with a healthcare professional  Regarding medical test I had My stools analyzed Giardia Ag Cryptosporidium Ag and they came back negative  I had the lactulose test and it came back high so I'm on two weeks of heavy antibiotics That still has not stopped me from eating gluten. Here's what I think is going on and I hope to have your opinion regarding it  Since I've been gluten-free for so long my intestinal tract has repaired itself consequently anything I eat with gluten now just bounces right off with no damage to my gut  however  when I asked AI what was going on the reply was celiac has not gone away and  if I continue to eat gluten I'm going to have problems   I look forward to your sage advice as to what the heck is going on with me Thank you for reading Mike 09112025
    • Scott Adams
      I agree, and generally it means that it isn't working in a high enough percentage of participants to continue pursuing it.
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