Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

It's Feeling Better The Best Way To Go?

alissa

By alissa
in Coping with Celiac Disease

Recommended Posts

alissa Rookie
alissa
Posted

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?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


wowzer Community Regular
wowzer
Posted

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
Guest cassidy
Posted

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
Jestgar
Posted

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

kbtoyssni Contributor
kbtoyssni
Posted
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
jlinc
Posted
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
blueeyedmanda
Posted

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,964
    • Most Online (within 30 mins)
      7,748
    Cbear
    Newest Member
    Cbear
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Does anyone here also have Afib

      By Scott Adams · Posted

      If black seed oil is working for his Afib, stick to it, but if not, I can say that ablation therapy is no big deal--my mother was out of the procedure in about 1 hour and went home that evening, and had zero negative effects from the treatment. PS - I would recommend that your husband get an Apple watch to monitor his Afib--there is an app and it will take readings 24/7 and give reports on how much of the time he's in it. Actual data like this should be what should guide his treatment.
    • Jacki Espo
      Covid caused reoccurrence of DH without eating gluten

      By Jacki Espo · Posted

      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      My only proof

      By Mari · Posted

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      Fascinating.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.