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It's Feeling Better The Best Way To Go?


alissa

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alissa Rookie

Just reading some the the topics.... it's funny how family members that have stomach problems and "D" , pretty much all symptoms of celiac will not ask to be tested. I have been gluten-free for the past two years and always had stomach problems as per the rest of my family members on my mom's side. A couple of them are on stomach pills (we all have had galbladder removed) yet none of them have sinced been tested for celiac. I think there is a fear in them that the tests could actually be positve and they would have to go gluten free. I feel finding out and going gluten free has made all the difference. Isn't feeling healthy better than the suffering?


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wowzer Community Regular

Alissa, I'm with you. If you are gluten free and feel better, then why would you eat it? I grew up with a little sister that was diagnosed with celiac at a year old. I'm still trying to figure out if I am. My blood test came back negative. I have had many bouts of strange rashes over the years and I'm wondering if it might be DH. I finally went on the diet a month ago. I have had quite a few improvements in that little amount of time. I do notice if I eat gluten I seem more sensitive to it now. I was using a lip gloss that I didn't realize for about a week. I'm still learning.

Guest cassidy

My mother and I have several family members that we suspect have celiac. We have told them but they don't want to listen. When my mom first told me about it I didn't want to hear anything, but that was only for a day or two. I got tested and went gluten-free right away but at first I was in denial and I didn't want to have to deal with it. Maybe the denial phase lasts longer for some people, especially if they don't live with the celiac and aren't reminded of it often.

Same goes for people who smoke and now have a "smoker's cough" or people who are overweight and have diabetes or joint problems. They could stop doing something they like to make themselves feel better, but most people don't.

Jestgar Rising Star

There's a lot of personal responsibility associated with this disease. Some people accept that easily and others don't.

kbtoyssni Contributor
There's a lot of personal responsibility associated with this disease. Some people accept that easily and others don't.

I agree. It seems like most people have to be very sick before they seek answers. If you just feel a little tired or get a bit of a stomach ache every now and then, it's not worth giving up all that yummy food. Now if you were throwing up after every meal and were too exhausted to get out of bed, you might reconsider how badly you want that food.

jlinc Rookie
There's a lot of personal responsibility associated with this disease. Some people accept that easily and others don't.

I agree. I think that modeling good behavior is the only way to teach. If I take care of myself, people in my family are more likely to, as well. I've found that's been true for several people I'm close to.

I don't like to "educate" people unless they ask me.

Sometimes I feel compelled to say something, like to my parents about my mom's persistent rash (sure looks like DH to me!), but if they don't listen, I have to be satisfied with having tried. Nagging is something I don't like when it's done to me, and I don't want to do it to anyone else, either.

Josh.

blueeyedmanda Community Regular

My mom has "D" all the time so if we are going shopping or anywhere she will not eat or drink. If we go to eat out, she won't have any coffee or drinks cause she says that is what causes her problems. She also sometimes blames herself for worrying. I love her to death but I know what her problem could be...gluten! She is 65 and I don't see her testing or changing her diet. I guess by now she probably feels like why bother. I am not going to be the one to push her. The frustration is not worth it.


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    • 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
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    • 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.
    • trents
      Yes, I can imagine. My celiac journey started with a rejection of a blood donation by the Red Cross when I was 37 because of elevated liver enzymes. I wasn't a drinker and my family doctor checked me for hepatitis and I was not overweight. No answers. I thought no more about it until six years later when I landed a job in a healthcare setting where I got annual CMP screenings as part of my benefits. The liver enzymes were continually elevated and creeping up every year, though they were never super high. My primary care doc had no clue. I got really worried as your liver is pretty important. I finally made an appointment with a GI doc myself and the first thing he did was test me for celiac disease. I was positive. That was in about 1996. After going on a gluten-free diet for three months the liver enzymes were back in normal range. Another lab that had gotten out of whack that has not returned to normal is albumin/total protein which are always a little on the low side. I don't know what that's about, if it's related to the liver or something else like leaky gut syndrome. But my doctors don't seem to be worried about it. One thing to realize is that celiac disease can onset at any stage of life. There is a genetic component but there is also an epigenetic component. That is, the genetic component is not deterministic. It only provides the potential. There needs also to be some health or environmental stressor to activate the latent gene potential. About 40% of the population have the genetic potential to develop celiac disease but only about 1% actually do.
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