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Have you got other permanent health issues from your celiac?

glutenfreekat

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glutenfreekat Newbie
glutenfreekat
Posted

I'm wondering if any of you, even after going glutenfree and potentially being glutenfree for years, have gotten any significant health issues that accompanied your celiac and that didn't go away with a glutenfree diet? By that I don't necessarily mean something super serious, but enough to lower your quality of life.

For me, I still suffer from some sort of life-disrupting IBS since going glutenfree, like my intestines have been somehow permanently damaged from the years of constant suffering and can't go back to the way they used to be before.. I've also found out I've had undiagnosed GERD and silent reflux since I got celiac (and I mean since celiac activated and I first got symptoms, not time of diagnosis), which means I've been drowning in slime, stuffy nose and post nasal drip ever since (for like 15-16 years). It never went away with going glutenfree, and I think my esophagal sphincter is basically broken from years of undiagnosed celiac, causing constant mucus build up to protect from the acid ?...

I also suffer from weird symptoms since I went glutenfree like easy fatigue, feeling out of energy every day, physical exhaustion is overwhelming, muscle weakness, head tension, feeling sensitive towards foods, like I have to eat a super balanced meal not to feel weird or ill from it (hard to explain), and I struggle with always feeling hypoglycemic even though my blood sugar's fine and I try to eat healthy, always thirsty (I guess due to the GERD burning my throat..), and bladder filling up easy, yet no signs of diabetes, or hypothyroidism or anything, and besides, diabetes 2 doesn't follow celiac, and if it's no 1, you get that early in life, and I doubt you have symptoms lasting for like 7-8 years without going full-blown or something...

I also suddenly can't manage my inner temperature well either, I over-heat super easily and no, I am nowhere near meno-pause, lol.

So basically, I just wonder if any of you can relate and suffer from side-effects from having had undiagnosed celiac for so long, even if it's a long time ago you went glutenfree, because the internet just says your gut heals and then you're fine, but I'm not fine, and I think it relates to my celiac. It's just as if celiac generally ruined something in me and now everything's out of order.

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laurajojetter Newbie
laurajojetter
Posted

YES! I was diagnosed with Celiac 10 years ago. I continued to have issue after issue even after going gluten-free. I have since developed a very similar issue to anything dairy related. After cutting out anything with dairy/lactose I was still having issues. I have also been diagnosed with a fructose malabsorption-meaning my body doesn't process natural or artificial sugars anymore. I also have low blood pressure and low blood sugar so I need some sugar! It's been fairly difficult to learn what measurement of which foods I can have. It also seems the longer since my diagnosis the more sensitive I become. It is funny you mention the sinus issues because I have had more and more of them for several years now. I do not eat gluten but like you I believe my body is just attacking itself on a continuous basis. I also have residual IBS like symptoms. I have never regained the ability to go to the bathroom like "normal". When I bring this up to the doctors they say I will either have to rely on laxatives the rest of my life or it is all in my head. I had one doctor try to convince me I need to eat the smarties candies daily to balance my sugar and undo what the Celiac had done....(EYE ROLL) Do not feel alone. I believe Celiac leads to more and more issues in the body. I am very sorry for what you are going through.

cyclinglady Grand Master
cyclinglady
Posted

You can have more than one illness.  First though, make sure you are getting follow-up care for celiac disease.  Have your antibodies gone down?  That is a good place to start.  Look to your gluten-free diet. Some huge chunk of celiacs do not heal.  Why?  They make lots of mistakes on the diet (like eating out or mis-reading label).  Consider the Fasano diet for a few months.  

https://res.mdpi.com/nutrients/nutrients-09-01129/article_deploy/nutrients-09-01129.pdf?filename=&attachment=1

You can develop Type 1 (autoimmune) diabetes at any time in your life.  It is no longer called Juvenile Diabetes!  It can take up to five years to develop in adults.  

I suffer from GERD.  A repeat endoscopy revealed that my small intestine has healed on a gluten free diet.  During that repeat endoscopy, I was diagnosed with Chronic Autoimmune Gastritis which can flare up despite having my celiac disease in remission.  It may be related to my Hashimoto’s Thyroiditis (which by the way, you should be screened for thyroid antibodies as you can have Hashimoto’s and still have good lab markers on a thyroid panel).  But who knows?  

Celiacs can also have food intolerances.  Keeping a food journal can help identify them.  

I have  learned that not everything can be blamed on celiac disease.  Do not get pigeonholed!  

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      Thank you - that makes perfect sense and I understand. celiac disease is an autoimmune disease which will cause further damage while gluten sensitivity is different. Based on my symptoms and bloodwork, I am almost certain I have celiac disease.  I kind of hate to hope for a positive biopsy but a negative one would be frustrating for sure. Regardless, I have done a lot of research on gluten-free diet and am prepared to begin a new lifestyle journey - with a lot of questions along the way.  I appreciate your information and advice! 
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    • Lynnard
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      By Lynnard · Posted

      Thank you!  This is super helpful and confirms everything I have read. I was definitely eating lots of gluten before both testing and endoscopy. If the biopsies do come back negative, I'm wondering how conclusion/distinction is made between celiac and gluten intolerance is made.  Or does it matter because presumably recommendation of gluten-free diet will be the protocol??  
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      You are welcome! We frequently get similar comments. Knowledge about celiac disease in the medical community at large is, unfortunately, still significantly lacking. Sometimes docs give what are obviously bum steers or just fail to give any steering at all and leave their patients just hanging out there on a limb. GI docs seem to have better knowledge but typically fail to be helpful when it comes to things like assisting their patients in grasping how to get started on gluten free eating. The other thing that, to me at least, seems to be coming to the forefront are the "tweener" cases where someone seems to be on the cusp of developing celiac disease but kind of crossing back and forth over that line. Their testing is inconsistent and inconclusive and their symptoms may come and go. We like to think in definite categorical terms but real life isn't always that way.
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