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

Kidney Stones Or Celiac

NewNicole

By NewNicole
in Coping with Celiac Disease

Recommended Posts

NewNicole Apprentice
NewNicole
Posted

Two nights ago I started getting sick. Both sides of my stomach and pain that radiates to my back. I originally thought it was my intestines but I'm wondering if it could be kidney stones. Yes I have had stones a few other times...I'm pretty lucky, huh. The pain is definitely intense. I'm really not standing much. I am taking Aleve which at least makes the pain a little more bareable. Although I'm pretty sure my husband would have died with this much pain. lol. Today I started my menstrual cycle so I suppose this could be a culprit. However for me I have been blessed with very mild ones my whole life and the pain I have seems to be too high to be ovary related. I don't think I got glutened but when I do it is a nasty pain. But I also become very tired and have headaches. None of which is happening this time. I don't want to go to a doctors because I am sick of being told to suck it up and move on. Does this sound familiar to anyone out there? Is it celiac or something else? And would you deal with the pain or go have it checked? Thanks for the input. PS.....can I just say thank you to everyone on here. It's nice to feel like someone listens, is willing to help, and might give you some input. Often times in the medical world the response is "it sucks to be you." lol

Nicole

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

Celiac.com Sponsor (A8-M):


kristenloeh Community Regular
kristenloeh
Posted

Kidney stones are pretty common with Celiac. For the longest time my doctors just thought I was a stone maker because my uric acid levels were fine and I have had 6 kidney stones and they had found nothing else wrong with me. The in April of this year I was diagnosed and it all came together, since we don't absorb calcium like we should, so then it leaches out of our bones and makes kidney stones. I still have horrible pains and think they are kidney stones, so I end up the the ER and there is nothing there. I guess it's just me healing and I will have those pains randomly for who knows how long. If you are really worried, it couldn't hurt to get a CT scan to make sure that you do or do not have a stone. Sorry hun, I know it sucks. :(

NewNicole Apprentice
NewNicole
Posted
  • Author

That's very interesting. I didn't even think about the two being related like that. My mother has a lot of kidney issues. One of her kidneys is functioning at 35% with over 30 stones in it. Plus the other kidney has had a couple stones in it that has caused problem. Her father lost a kidney and the other one failed. With all of this plus my own history of kidney infections and kidney stones I have been a little worried about future issues. If Celiac disease is the cause of my issues than the gluten-free diet should help prevent some of these issues, right? That would be great news. Very encouraging. As for this time, I'm not too worried if it is a stone. I know the routine....drink, drink and drink some more. Thanks so much. This is great information.

shadowicewolf Proficient
shadowicewolf
Posted

Where is the pain located in your back? My mother thought it was just a part of her bad back and it turned out to be her appendix nearly bursting. When in doubt, i'd go in.

I've never had one, but i've had a gallbladder die on me so i know pain XD

kristenloeh Community Regular
kristenloeh
Posted

Where is the pain located in your back? My mother thought it was just a part of her bad back and it turned out to be her appendix nearly bursting. When in doubt, i'd go in.

I've never had one, but i've had a gallbladder die on me so i know pain XD

Kidney stone pain also radiates into your back. Appendix pain and gallstone/gallbladder pain are very similar as well, also ovarian cysts feel around the same kind of pain as well. My Celiac pain feels just like my kidney stones/ovarian cysts and my moms co-worker had the same pains during her first year or so while healing as well. Just keep an eye out, and if you are in doubt, head to the ER, it never hurts :}

NewNicole Apprentice
NewNicole
Posted
  • Author

So I'm thinking I would have passed the stone by now if that was my problem. I may be wrong with that, but it sounds good to me. Lol. And I'm pretty sure the appendix is lower right quadrant. My pain is on both sides about 3 inches from the belly button and a lot of pain radiating to the back. It could be the cysts. I'm thinking that could be right or it's just my intestines. But for now the pain is still there, but it's a little more bare able . It's good to know you can still get these during the healing process. That means to me that I didn't get hit with gluten and it's probably not something too serious. Thanks for the help everyone.

shadowicewolf Proficient
shadowicewolf
Posted

Mmmm... a tid bit of info, my mothers appindix made her hurt in her lower back whilst my cousin's made her hurt on her left side, frountal area. Also, when my gallbladder went out on me i'd hurt everywhere from my belly button all the way around my back.

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

Celiac.com Sponsor (A8-M):


NewNicole Apprentice
NewNicole
Posted
  • Author

shadowicewolf, I suppose this is why it's so hard for the doctors to diagnose abdominal pain. It seems to vary from person to person plus the pain can radiate all over the body.

  • 10 months later...
dotsdots Newbie
dotsdots
Posted

I am now in the process of getting tested for celiac disease. But I have had at least 100 oxalate kidney stones. (No kidding - 3 to 4 a year for almost 30 years.) I've had them zapped with a laser in the hospital 4 times, one time with complications where I had to stay a week. Plus a myriad of ER visits and stones passed on my own. The pain can radiate from the back all around into the abdomen. And sometimes it just stops, which usually means the stone just stopped moving down the ureter or within the kidney, so now it doesn't hurt for a while. When it starts to move again, it will hurt again. (As you know, "hurt" is a mild word. There's nothing to describe it...)

 

Getting a CT scan is a good idea if you have insurance and can afford it. That way you'll know what's there. Plus, stones that were already there may still be bothering you. You just won't make any more when you are off gluten. (Yeah!!!)

 

Good luck to you. I'm hoping to find out more about myself with an accurate diagnosis...

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. SamAlvi
      - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      High TTG-IgG and Normal TTG-IgA

      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...
    2. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Blood tests for thiamine are unreliable. The nutrients from your food get absorbed into the bloodstream and travel around the body. So, a steak dinner can falsely raise thiamine blood levels in the following days. Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte...
    3. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      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?
    4. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
    5. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      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....
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,874
    • Most Online (within 30 mins)
      7,748
    Jen J.
    Newest Member
    Jen J.
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      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
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • 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? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • 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! 
×
×
  • 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.