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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? :)

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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!!

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      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
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    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
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      Son's legs shaking

      By knitty kitty · Posted

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    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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