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Is It True?

Q1821

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gfpaperdoll Rookie
gfpaperdoll
Posted

I also agree with Deb in NY, that celiac is with you your whole life. I was born with it 60 years ago, my son was born with it & his son was born with it. I know what I know. What you thought were a multiple set of health issues when growing up was really just one thing you have celiac or gluten intolerance & yes I also say it is the same thing.

& yes it is genetic & you are not the only one in your family with it. a person can have total flattened villi & no symptoms & then get cancer say of the colon - like my mom died with (I am double DQ1) & they die from the cancer, well no one ever does an autopsy to see if their villi are flattened. so you can say they died of colon cancer. Well what caused the colon cancer, well no one knows...

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jewi0008 Contributor
jewi0008
Posted
I have yet to be diagnosed, but I started showing major symptoms 3 years ago as well, directly following a gall bladder surgery. The Doc told me it was common to have diarrhea for a few months following the surgery....well, it's never stopped and a host of other symptoms started erupting quickly following. Out of curiosity...what did the dentist tell you? I've been having dental problems as well the last several months...My teeth where always my best attribute.

I went to the dentist for a normal checkup. I brought it to their attention that I have had mouth pain since I had my tonsils out. Like my mouth gets dry/irritated/pain from my teeth to the sides of my tongue/trouble talking,ect. After yet ANOTHER extremely thorough examination of mouth (and them must thinking I'm crazy) they asked if I had food allergies? In addition, I had 2 more cavities that visit. This time, I even had a cavity in between my front teeth (odd!) After that visit, I went and got the scratch test for allergies at the allergist. Out of 60 foods,ect...NOTHING. The allergist suggested eliminating wheat/gluten and b/c of my history w/ stomach problems that perhaps I have Celiac. When I have no wheat/gluten/contamination/ect. I'm good. My mouth is fine. My stomach is fine. My teeth are fine. But if I accidently have anything, I will be in pain. Last weekend I had 100% Whey Protein Pro Performance from GNC...I immediately went to the bathroom and the next day my teeth were so sensitive and my mouth hurt. I found out later that protein powder is NOT gluten-free! Does this sound like anything you have? What dental problems do you have?

I believe I have Celiac, BUT have been told to get a blood test for it, you must be consistently eating wheat/gluten for 3 months prior to testing to have it be accurate. I just can't even fathom the thought of 3 months (and then time to recoop on top of that) of being in so much pain. So I don't know if I'll ever be 100% sure.

Guest Doll
Guest Doll
Posted
I read somewhere that celiac disease can suddenly show up if you experiance lots of stress or have something traumatic happen in your life. Has anyone else heard this? Is it true? Can it lay dormant and then just show up?

Yep. Just as it is the same for ALL autoimmune diseases, like MS or Lupus. It would be very rare if not impossible for someone to be "born with" an autoimmune disease. A trigger in the environment like a virus is needed to trigger the disease.

debmidge Rising Star
debmidge
Posted

Well however it goes, my husband was as healthy as "horse" as they say until he was 27 - woke up one morning with the big D and it was all gone as of that day. Who knows that was going on inside his guts prior to that fateful day when the diarrhea started? Perhaps he had celiac from a child and at age 27 it caught up with him?? I don't know. I guess there will never be an answer......

Guest Doll
Guest Doll
Posted
It depends what you call IBS I guess.... it seems to be a diagnisis of "we don't really know" ???

My theory is that we are destroying villi all the time... but the repair faster than we destroy them, then when the trigger happens the body can't keep up... some other forms of IBS probably exist but I seem to remember a whole load of IBS patients (well above normal) actually are celiac but just not diagnosed and when they take the blood tests they show up.

If your Celiac theory is correct, can you explain why there is no evidence of autoimmune destruction at all? How does this explain how someone can go for years and experience stress, illness, etc. and yet not have any Celiac symptoms? Then, after say a particular infection, bam, there they are.

An early stage Type 1 diabetic (autoimmune diabetes) may still have fairly normal blood sugars, but there is evidence of quick beta cell turnover and antibodies, even if the body is able to keep up with insulin production for a short period of time.

The "constant regeneration" theory is cool, but it doesn't fit with what is known. In most cases, current tests will show evidence of *any* intestinal damage and/or antibodies in most Celiacs, regardless of symptoms or regeneration capacity.

P.S. I missed your theories Gfp! :)

Guest Doll
Guest Doll
Posted
I do agree that the classic celiac diagnosis is overly restrictive. However, most of what I've read indicates that there are two distinct types of reactions to gluten - allergy and autoimmune. While they have similar symptoms in some people, the internal mechanisms are different.

I agree 100%. Autoimmune Celiac Disease is not the same as non-autoimmune gluten intolerance and thus should not be clumped together. As, well, the second group does not have intestinal damage. Both are valid conditions, just that they are different.

I consider people that have IgG/IgA antibodies but no (detected) intestinal damage to still have (latent or undetected) Celiac Disease. I consider those with IgE antibodies to have a traditional gluten allergy, and those symptomatic without *any* detectable abnormalities (blood or biopsy) to have some variation of an allergy/intolerance, not autoimmunity.

Some people may be born with a genetic disposition to be unable to process gluten, much like an enzyme deficiency. This would not be Celiac, and should *not* be called Celiac Disease based on what we consider Celiac Disease to be.

Comparing Celiac and non-autoimmune gluten intolerance is like comparing Cancer to Hyperthyroidism because they both share weight loss as a symptom. Meanwhile, the 2 diseases are completely different.

little d Enthusiast
little d
Posted

My symptoms became worse after my daughter was born, I had more D all the time with the gas pain that it felt like I was in Labor again, before they gas would hurt but now i had something to compare the pain. the heartburn continued which bothered me and then all other symptoms came along for the ride. My tooth enamel on my two front teeth I have always had since the day they came out. I don't ever remember not having a stain on my teeth. At first I always thought that it was because I pulled my teeth too soon it took them 2 yrs to finally come out. Matter of fact that is what I asked Santa for at Christmas time was my two front teeth. I would sing the song but you don't want to hear me sing :lol:

donna

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      is my cleiac disease gone?

      By numike · Posted

      69yo M I have had skin cancer basal  I use a higher quality Vit D https://www.amazon.com/Biotech-D3-5-5000iu-Capsules-Count/dp/B00NGMJRTE
    • Wheatwacked
      is my cleiac disease gone?

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    • trents
      is my cleiac disease gone?

      By trents · Posted

      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
      is my cleiac disease gone?

      By numike · Posted

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    • trents
      is my cleiac disease gone?

      By trents · Posted

      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?
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