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

Connecting The Dots...

MEH

By MEH
in Coping with Celiac Disease

Recommended Posts

MEH Apprentice
MEH
Posted

Good Morning Everyone,

I have to say, almost each and every day I learn something new or connect a new dot. When your health has slowly detiorated over the course of a decade or more---and you had no idea why--- and then suddenly, miracuously, you begin to put the pieces together....your life begins to change in so many ways. For the first time you think that maybe you aren't going to die young after all, or that maybe you could possibly have several good days in a row for the first time in many, many years.

Here's my latest dot connecting: About five years ago I was diagnosed with Interstital Cystitis, which is a bladder disease. Your bladder burns and hurts an awful lot---and many people suffer from incontinence (luckily mine isn't that bad), the inability to have sex anymore (can be very painful---because your bladder is oversensitive). In addition to this, as I've pointed out before, I suffer from an MS diagnosis, asthma, reflux (my whole life), and a whole host of other things I've mentioned before. It was as if each system in my body was slowly shutting down.

I didn't tie the bladder disease in to "gluten" until this morning, when I woke up with a painful bladder--which comes and goes. And a quick google search showed me how often the two are related! A new revelation!

Anyone else have IC here?

Hmmmm... I wonder if I can blame needing glasses early on gluten intolerance? :)

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

Celiac.com Sponsor (A8-M):


Takala Enthusiast
Takala
Posted

I had more infections than I could count, because my kidneys must have been working overtime harvesting calcium out of my bones, circulating it in my blood trying to keep the levels up, and depositing it in my bladder. Doctors alternately told me to take calcium and to not take calcium, take calcium, don't take calcium, depending on their specialty.

All gone. One of the better side effects of going gluten free. :)

Tigercat17 Enthusiast
Tigercat17
Posted

I've had so many kidney, bladder, sinus, and respiratory infections in the last twenty years. I was starting to get immune to the antibiotics the doctors were giving me and I had to start buying the most expenisive brands. Most of the time I had to get two to three presriptions of them just to recover. I was sick so much out of every year. It was horrible. It seems like I was always going to the doctors.

The good news is I haven't had ONE at all since going gluten free! :) I wish I was diagnosed so much earlier. I know I had this for the last twenty years or maybe all my life? I was going to the best doctors in the city, but no one ever thought to test me for this??? It's really scary...

And yes, celiac disease does effect your vision. When all of my health problems started -twenty years ago that's when all of the sudden I needed glasses. :blink: Celiac disease causes malabsorption, so we weren't getting enough vitamin A and Vitamin A plays an essential role with your vision, or vision is effected. You might have been deficient in vitamin A for a very long time, but hopfully that will change for you. Even my eye prescription has improved in the last year. I can't wait to go to my next follow up appointment to see if my prescription is even better. :) Maybe we won't need glasses in the future??? B)

It's crazy when you start to think about how much this disease effects other body systems. I've been reading a really great book for the second time around by Dr Peter Green. If you don't have it already I highly recommend it. Someone here on the board recommended to me last year. It's a great read! It's called "Celiac Disease -A Hidden Epidemic."

Here's to healthy gluten free eating! :) Good Luck!

wheeleezdryver Community Regular
wheeleezdryver
Posted

Good Morning Everyone,

I have to say, almost each and every day I learn something new or connect a new dot. When your health has slowly detiorated over the course of a decade or more---and you had no idea why--- and then suddenly, miracuously, you begin to put the pieces together....your life begins to change in so many ways. For the first time you think that maybe you aren't going to die young after all, or that maybe you could possibly have several good days in a row for the first time in many, many years.

Here's my latest dot connecting: About five years ago I was diagnosed with Interstital Cystitis, which is a bladder disease. Your bladder burns and hurts an awful lot---and many people suffer from incontinence (luckily mine isn't that bad), the inability to have sex anymore (can be very painful---because your bladder is oversensitive). In addition to this, as I've pointed out before, I suffer from an MS diagnosis, asthma, reflux (my whole life), and a whole host of other things I've mentioned before. It was as if each system in my body was slowly shutting down.

I didn't tie the bladder disease in to "gluten" until this morning, when I woke up with a painful bladder--which comes and goes. And a quick google search showed me how often the two are related! A new revelation!

Anyone else have IC here?

Hmmmm... I wonder if I can blame needing glasses early on gluten intolerance? :)

Hi!! I'm self- diagnosed gluten- intolerant (or celiac, who knows...) and IC [and for anyone reading, no i don't just go around diagnosing myself with things. I do my research. And I've had too many not- so good experiences w/ doctors to want to deal with them unless absolutely necessary. And no, I don't have the luxury of being able to switch drs!]

Thankfully, my IC seems to be a mild case, and controlled by keeping to the IC diet (no acidic foods) as much as possible, and Prelief (an antacid you take before eating acidic foods) helps when I do eat something acidic.

it seems to me that there is a connection between gluten intolerance and IC... at least for me. I do hope that being gluten- free will allow both my digestive tract & bladder to heal, and I will be able to safely eat foods that currently

bother my bladder without haivng to rely on Prelief. I've accepted that i will never be able to eat gluten, i have no problems w/ that !! (thankfully there are so many alternatives!!)

Now, if being gluten- free could fix my eysight.... that would be a unexpected shock... I've worn glasses for nearsightedness since I was in first grade, and I'm 34 now!!

Archived

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

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


  • Member Statistics

    • Total Members
      131,959
    • Most Online (within 30 mins)
      7,748
    jenny44
    Newest Member
    jenny44
    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.