Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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:
    Where Your Contribution Counts!
    eNewsletter
    Support Us!

Need Some Input


lizard00

Recommended Posts

lizard00 Enthusiast

I thought I would pose this question here since you are some of the most knowledgable folks I know. My son's teacher emailed me a couple of weeks ago that he had been going to the bathroom a lot. So we talked about it, and a couple of days later when I asked him about it again, he said he went at the appropriate times.

There are some days where I think he goes to the BR alot, and then some where I don't notice it. So of course, my radar was up for diabetes. :( Recently, he's been saying he's cold. Today he wore a long sleeved shirt out it was 90 degrees out (and humid!).

And he's hungry ALL of the time! I figured it was cause he was a 6 yr old growing boy, but he is always looking for something to eat, and he loves, loves, loves starchy stuff.

Any thoughts? Even my husband, who is usually not the alarmist, is wondering if we should take him to the doc.

As a side note: he was tested for celiac about 3 yrs ago, and it was negative. I was ok with that, since he really wasn't experiencing any symptoms, he was growing fine, etc. I mainly had him tested because I had recently been diagnosed, and I knew he carried the gene.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



stanleymonkey Explorer

get himr retested, and for anemia, my SIL is aneamic and feels the cold

tests are unreliable in young kids so now he's a bit older it may give you a psoitive

or even just remove gluten and see what happens, unless you need a diagnosis for insurance reasons, or to get cooperation with his school for glutren free lifestyle

def go to the doc, and ask for retesting

Link to comment
Share on other sites
kareng Grand Master

I had a 4-7 yr old who always went if he was given the opportunity, passed the house bathroom or got bored shopping.

I would go to the doc & see about the diabetes and a UTI. They tested mine for the UTI because they said it doesn't always bother boys like it does girls. Mine was all negative, just a quirky boy. My boys find the A/C cold when just sitting still. They spend a lot of time , 1 outside working & camping the other in a poorly cooled office & no A/C warehouse.

Link to comment
Share on other sites
lizard00 Enthusiast

I had a 4-7 yr old who always went if he was given the opportunity, passed the house bathroom or got bored shopping.

I would go to the doc & see about the diabetes and a UTI. They tested mine for the UTI because they said it doesn't always bother boys like it does girls. Mine was all negative, just a quirky boy. My boys find the A/C cold when just sitting still. They spend a lot of time , 1 outside working & camping the other in a poorly cooled office & no A/C warehouse.

We were at my my mom's last night and she and her husband don't turn on the air... ever. He wanted a blanket. :ph34r: Last night was milder than it has been, but the house was by NO means cold. It's just odd that he's always so cold.

I'm thinking he needs to go. I just am unsure if the two are related. I emailed his teacher and asked how the bathroom situation was going... never heard back, but it is the end of the year. I'll see her on Tuesday so I'm going to ask her about it again.

Link to comment
Share on other sites
kareng Grand Master

We were at my my mom's last night and she and her husband don't turn on the air... ever. He wanted a blanket. :ph34r: Last night was milder than it has been, but the house was by NO means cold. It's just odd that he's always so cold.

I'm thinking he needs to go. I just am unsure if the two are related. I emailed his teacher and asked how the bathroom situation was going... never heard back, but it is the end of the year. I'll see her on Tuesday so I'm going to ask her about it again.

The cold parts a bit odd. I had 2 6 yr old boys & bathroom stuff can be an issue. Maybe thyroid for the cold part? I hope it's about yearly check-up time. The 2 things may be separate things - lucky you! :unsure:

Link to comment
Share on other sites
cassP Contributor

i agree with everyone above- get him retested- it could have been triggered since then... or maybe there's enough abs now to show up.

also- i often (towards the end of my gluten days) felt like i was getting a bladder infection. i HONESTLY think that if i had continued to eat gluten- i may have developed Interstitial Cystitis. it seems like some of the autoimmune people i know have this- i wonder if it's common in ai disease.

also- i know its more common in women, and not common in childhood- but thyroid disease is still possible- and is often in those with autoimmune genes in the family. i was not diagnosed till i was 38- BUT i had Beau's Lines on my thumbnails ever since i was 8!!! and they did not go away untill 30 years later- after being on meds for a month!! so may be a good idea to check his thyroid- (a complete panel- and maybe also TPO abs)

Link to comment
Share on other sites
Mummyto3 Contributor

A sensitivity to cold could be thryoid related. That's how I was, I'm now on medication. I'd also check for diabetes and anemia. Do see a dr and discuss whats been happening and if it isn't mentioned, then ask about possibilities of thyroid issues, diabetes and anemia x

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



domesticactivist Collaborator

Definitely get him tested for celiac, diabetes and thyroid issues. Oh, and one kind of anecdotal thing about the bathroom visits - I always needed to pee a lot, and have always had problems regulating blood sugar, but diabetes screening came back negative. Once we switched to the GAPS diet I stopped needing to pee all the time and I don't have those big blood sugar spikes and crashes any more.

Link to comment
Share on other sites
Cara in Boston Enthusiast

I was told that my negative son needs to be tested every two years regardless of symptoms. MD said bring him in earlier if he has any symptoms before that. (Younger son has celiac disease - biopsy and I had a positive blood test but negative biopsy)

Cara

Link to comment
Share on other sites
Darn210 Enthusiast

Just a story to share on bathroom visits . . . in first grade when my son starting going to school full time (Kindergarten was part time), I noticed my son started having to go to the bathroom quite often. I took him to the doc and had him checked for a UTI which was negative. She said it was common that kids have a tendancy to mess up their ability to tell when they need to go. It starts off by holding it too long . . . repeatedly . . . like not wanting to go to the bathroom in school. Then when they do go, they don't empty their bladders all the way because they've lost the ability/sensation to tell if it's empty. Stress on the stretched out bladder muscles from constant full bladders can also lead to muscle spasms that give them an urgency to go. This all resulted in my son having to go to the bathroom ALL the time.

There was a medication to help with the spasms but the doc wanted us to try some "retraining" first and that took care of it so no medication was required.

We were suppose to send him to the bathroom every hour whether he needed to go or not. When he went to the bathroom, he was suppose to empty his bladder, wait a couple of minutes, try to go again (since he couldn't actually tell if his bladder was empty), also try bending over to help empty the bladder. I can't remember how long we did this . . . a week maybe . . . then started letting the interval get a little longer and longer.

We also added mini lectures/reminders about waiting too long to "go".

Hope your situation is something as benign as this. I would check with the doc, though, too.

Link to comment
Share on other sites
shayre Enthusiast

My son had a UTI too, but he was potty training at the time. And it was for the reason stated above, and he just had to quit holding it. I have 2 boys, and they are ALWAYS hot! The clothes come off as soon as they come in the door. I have a hard time keeping clothes on them! I find that to be odd for a little boy to be cold so much. I am cold all of the time, but then I'm a grown up with multiple autoimmune issues...thyroid being one of them. Although my thyroid has been testing normal. Not to throw this in the mix, but if he is genetically prone to autoimmune issues...Lupus people are cold a lot too. I recently joined their forum, and they all complain about being cold. I'm sure that's not an issue, but just throwing it out there. My Endo and GI doc both said that the positive gene testing for celiac disease just really meant...that i was prone to autoimmune diseases in general...no matter how they decide to manifest themselves. I'd definitely get him checked anyway. Little boys should be warm from all of their energy...I would think.

Link to comment
Share on other sites

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,502
    • Most Online (within 30 mins)
      7,748

    Nadaly100
    Newest Member
    Nadaly100
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • powerofpositivethinking
      I haven't been on this forum for a long time, but it was absolutely wonderful during the diagnostic process!  My path for celiac disease diagnosis was the following: -Had normal IgA level, and my only serology positive test was the DGP IgG -Deficiencies in both Vitamins D and K that did not increase at first despite massive supplementation -Diagnosis of fat malabsorption both total and neutral -Diagnosis of severe exocrine pancreatic insufficiency (EPI) -Testing was completed to rule out causes of EPI, and the only one not ruled out was celiac. -Both traditional endoscopy and pill capsule endoscopy yielded negative results for biopsy confirmation, but my GI doctor said that both procedures simply could have missed the damaged spots. -EPI and fat malabsorption resolved after taking Creon for 6 months since my EPI was caused by celiac -23 and Me said I don't have either of the two prominent genes for celiac disease   Remember that you might not have 'textbook' symptoms, but you still may have celiac disease.   Also, I am SO incredibly grateful for this site for all the learning it has allowed me to do. I have a senior dog, and these last few weeks with her were very scary! After two hospital stays, she finally received an IBD diagnosis after having gastroenteritis and pancreatitis. I know that celiac disease is not IBD, however, through reading this site, I learned more about it. I was relieved when I found out she had IBD and not cancer this past Wednesday. I know IBD can be managed thanks to what I've learned here!  So celiac.com, not only did you help me, but you helped my pup too! Thank you ❤️  
    • SuzanneL
      It was tTG IGG that was flagged high. I'm not sure about the other stuff. I'm still eating my normal stuff. 
    • cristiana
      Thank you for your post, @Nedast, and welcome to the forum. It is interesting to read of your experiences. Although I've not had TMJ, from time to time I have had a bit of mild pain in my jaw, sharp stabbing pains and tingling in my face which appears to have been caused by issues with my trigeminal nerve.  I read that sometimes a damaged trigeminal nerve in coeliacs can heal after adopting a gluten free diet.  I try to keep out of cold winds or wear a scarf over my face when it is cold and windy, those conditions tend to be my 'trigger' but I do think that staying clear of gluten has helped.  Also, sleeping with a rolled up towel under my neck is a tip I picked up online, again, that seems to bring benefits. Thank you again for your input - living with this sort of pain can be very hard, so it is good to be able to share advice.
    • Julie Riordan
      I am going to France in two weeks and then to Portugal in May   Thanks for your reply 
    • Nedast
      I made an account just to reply to this topic. My story resembles yours in so many ways that it is truly amazing. I also suddenly became lactose intolerant, went a little under 10 years attributing all my symtoms to different body parts, never thinking it was something systemic until much later. I had the same mental problems - anxiety, depression, fatigue, etc. In fact, the only real difference in our story is that I was never formally diagnosed. When I discovered that my myriad symtoms, that had been continuous and worsening for years, all rapidly subsided upon cessation of consuming gluten, I immediately took it upon myself to cut gluten out of my diet completely. I live in America, and had lost my health insurance within the year prior to my discovery, so I could not get tested, and I will never willingly or knowingly consume gluten again, which I would have to do in order to get tested now that I have insurance again. But that is not the point of this reply. I also had extreme TMJ pain that began within months of getting my wisdom teeth out at - you guessed it - 17 years old. I was in and out of doctors for my various symptoms for about 5 years before I gave up, but during that time I had also kept getting reffered to different kinds of doctors that had their own, different solutions to my TMJ issue, an issue which I only recently discovered was related to my other symptoms. I began with physical therapy, and the physical therapist eventually broke down at me after many months, raising her voice at me and saying that there was nothing she could do for me. After that saga, I saw a plastic surgeon at the request of my GP, who he knew personally. This palstic surgeon began using botox injections to stop my spasming jaw muscles, and he managed to get it covered by my insurace in 2011, which was harder to do back then. This helped the pain tremendously, but did not solve the underlying problem, and I had to get repeat injections every three months. After a couple of years, this began to lose effectiveness, and I needed treatments more often than my insurance would cover. The surgeon did a scan on the joint and saw slight damage to the tissues. He then got approved by insurance to do a small surgery on the massseter (jaw) muscle - making an incision, and then splicing tissue into the muscle to stop the spasming. It worked amazingly, but about three months later it had stopped working. I was on the verge of seeing the top oral surgeon in our city, but instead of operating on me, he referred me to a unique group of dentists who focus on the TMJ and its biomechanical relationship to teeth occlusion (i.e. how the teeth fit together). This is what your dentist did, and what he did to you was boderline if not outright malpractice. There is a dental field that specializes in doing this kind of dental work, and it takes many years of extra schooling (and a lot of money invested into education) to be able to modify teeth occusion in this manner. Just based on the way you describe your dentist doing this, I can tell he was not qualified to do this to you. Dentists who are qualified and engage in this practice take many measurments of your head, mouth, teeth, etc., they take laboratory molds of your teeth, and they then make a complete, life-size model of your skull and teeth to help them guide their work on you. They then have a lab construct, and give you what is called a "bite splint." It looks and feels like a retainer, but its function is entirely different. This is essentially a literal splint for the TMJ that situates on the teeth. The splint is progressively modified once or twice per week, over several months, in order to slowly move the joint to its correct position. The muscles spasm less, stress is taken off the joint, as the joint slowly moves back into its proper position. The pain reduces each month, each week, sometimes even each day you go in for a visit. The joint has to be moved in this manner with the splint BEFORE the modification to the teeth begins. They then add to your tooth structure with small bits of composite, to keep the joint in its proper place after it has been sucessfully repositioned. Subtracting from your teeth, by grinding down bits of your natural tooth structure, is done very conservatively, if they have to do it at all. This process worked for me - after six months, my face, jaw, neck all felt normal, and I had no more pain - a feeling I had not had in a long time. It also made my face look better. I had not realized the true extent that the spasming muscles and the joint derangement had effected the shape of my face. The pain began to return after a few months, but nowhere near where it had been before. This immense reduction in pain lasted for a little over two years. The treatment still ultimately failed, but it is not their fault, and it is still the treatment that has given me the most relief to this day. Later on, I even went about three years with very, very good pain reduction, before the joint severely destabilized again. This field of dentistry is the last line treatment for TMJ issues before oral surgery on the TMJ. There aren't as many denists around who practice this anymore, and the practice is currently shrinking due to dentists opting for less espensive, additional educations in things like professional whitening, which have a broader marketability. Getting this treatment is also very expensive if not covered by insurance (in America at least). My first time was covered by insurance, second time was not, though the dentist took pity on me due to the nature of my case and charged like a quarter of usual pricing. Most cases seen by these dentists are complete successes, and the patient never has to come back again. But occasionally they get a case that is not a success, and I was one of those cases. A little over a year ago, I began seeing the second dentist who keeps my TMJ stable in this manner. The first dentist retired, and then died sadly. A shame too, because he was a truly amazing, knowledgable guy who really wanted to help people. The new dentist began to get suspicious when my joint failed to stay stable after I was finished with the bite splint and his modifications, so he did another scan on me. This is ten years after the first scan (remember, I said the surgeon saw "slight" damage to the tissue on the first scan). This new scan revealed that I now no longer have cartilage in the joint, on both sides - complete degeneration of the soft tissues and some damage to the bone. The dentist sat me down and had a talk with me after these results came in, and said that when he sees damage like this in cases like mine, that the damage to the joint is most likely autoimmune, and that, in his experinece, it is usually autoimmune. He has sent patients with cases like mine to Mayo Clinic. He said he will continue to see me as long as the treatment continues to offer me relief, but also said that I will probably have to see a dentist for this type of treatment for the rest of my life. He is not currently recommending surgery due to my young age and the fact that the treatment he provides manages my symptoms pretty well. I still see this dentist today, and probably will see this kind of dental specialist for the rest of my life, since they have helped with this issue the most. I did not inform him that I am 100% sure that I have celiac disease (due to my complete symptom remission upon gluten cessation). I didn't inform him because I thought it would be inappropriate due to not having a formal diagnosis. I was disappointed, because I had believed I had caught it BEFORE it had done permanent damage to my body. I had never suspected that my TMJ issues may be related to my other symptoms, and that the damage would end up complete and permanent. Luckily, I caught it about 6 months after my other joints started hurting, and they stopped hurting right after I went gluten free, and haven't hurt since. I of course did the necessary research after the results of the second scan, and found out that the TMJ is the most commonly involved joint in autoimmune disease of the intestines, and if mutliple joints are effected, it is usually the first one effected. This makes complete sense, since the TMJ is the most closely related joint to the intestines, and literally controls the opening that allows food passage into your intestines. I am here to tell you, that if anyone says there is no potential relationship between TMJ issues and celiac disease, they are absolutely wrong. Just google TMJ and Celiac disease, and read the scientific articles you find. Research on issues regarding the TMJ is relatively sparse, but you will find the association you're looking for validated.
×
×
  • Create New...