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Is It True?


Q1821

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gfpaperdoll Rookie

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
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
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

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
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
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

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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    • trents
      Yes, I'd like to know also if a "total IGA" test was ever ordered. It checks for IGA deficiency. If you are IGA deficient, it will likely render the individual celiac IGA antibody tests invalid. Total IGA goes by other names as well:  Immunoglobulin A (IgA) Test Serum IgA Test IgA Serum Levels Test IgA Blood Test IgA Quantitative Test IgA Antibody Test IgA Immunodeficiency Test People who are IGA deficient should have IGG tests run as well. Check this out:    I am also wondering if your on again/off again gluten free experimentation has sabotaged your testing. For celiac disease testing to be valid, one must be eating generous amounts of gluten for weeks/months leading up to the test.
    • Scott Adams
      I’m so sorry you’re going through this—it sounds like you’ve been on a really challenging journey with your health. Your symptoms (stomach pains, bloating, low iron, joint pain, brain fog, etc.) do sound like they could be related to gluten sensitivity or another condition like non-celiac gluten sensitivity (NCGS). It’s interesting that your bloodwork hasn’t shown celiac markers, but the lymphocytosis in your duodenum could still point to some kind of immune response or irritation, even if it’s not classic celiac disease. The fact that your symptoms improved when you went gluten-free but returned when you reintroduced gluten (especially with the donut incident) is a pretty strong clue that gluten might be a trigger for you. It’s also worth noting that symptoms can be inconsistent, especially if your body is still healing or if there are other factors at play, like stress, cross-contamination, or other food intolerances. Do you have more info about your blood test results? Did they do a total IGA test as well? 
    • KDeL
      For years, I have dealt with various gluten related symptoms like stomach pains, bloating, IBS-C "ish" digestive issues, low iron, low Vit D, joint pains, brain fog, and more. I finally got a double scope and stomach looks clear, but I have some lymphocytosis of the duodenum. I am wondering if this sounds familiar to anyone, where I have not shown celiac red flags in bloodwork IGA tests. WIll be following up soon with GI Dr, but so far, my symptoms are intermittent. I go back and forth with gluten-free diet (especially this past year.... did two tests where the stomach pains I had went away without gluten in diet. HOWEVER, I added it back a third time and I didn't get the pains)   Anyway, I am so confused and scared to eat anything now because I recently had a few bites of a yeasty donut and I immediately got so sick. Any thoughts??
    • Peggy M
      Kroeger has quite a few Gluten free items.  Right now they are redoing my Kroeger store and are adding everything into the regular sections.  Since this was done some new ones have been added.  Publix and Ingles also have great selections. I actually shop Walmart and Food City to since prices on some items vary from store to store.
    • Scott Adams
      Sorry but I don't have specific recommendations for doctors, however, starting out with good multivitamins/minerals would make sense. You may want to get your doctor to screen you for where you different levels are now to help identify any that are low, but since you're newly diagnosed within the past year, supplementation is usually essential for most celiacs.
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