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!

What do you guys think about these symptoms?


Zachm

Recommended Posts

Zachm Contributor

I went gluten free back in late July, 2015. Before that I had had problems of using the bathroom constantly, like got no sleep because it would keep me up on quite a few nights. After the diagnosis I did make a few mistakes with CC, eating stuff that actually did have it, and touching things that did, so I would say since September, I have been EXTREMELY knowledgeable on what I am even touching and cook my own food. So, the weird thing is with me, I get these HORRRRRRIBBBLLLEEE cramping diarrhea episodes and they didn't start until after I went gluten free (weird, I know). I will admit, I am very picky and 99% of what I have eaten is this right here:

-Perdue gluten free chicken strips

-Scharr Multi grain gluten free bread (tastes a whole lot better than Udi's, in my opinion)

-Foster Farms gluten free corndogs

-Can't think of the brand at the moment, but gluten free meatballs

-When it comes to snacks, Lays Stacks, gluten free muffins, Utz chips, and a couple other things

-Gluten free pizza I make myself from ingredients I know are gluten free

Like I said though, I am extremely picky and whenever I eat, that is 9 out of 10 times what I am eating. Obviously, I am lacking certain things through my natural diet, especially after this new diet, so I try to take vitamins every day. On the other hand, the only diagnosis I have of Celiac disease is the bloodwork (although my doctor is almost certain the bloodwork is correct) and I have been postponing the endo and colonoscopy due to college and other stuff. I definitely am becoming a hermit though and dont enjoy it so sooner or later I will have to get this done. Also, I have been checked from gallbladder and appendix and those were fine. I kind of wonder about potassium being low causing the severe cramps? And it is VERY urgent diarrhea. Like if I am summoned by my intestines at 3am, there is no just closing my eyes and waiting til the morning lol.   

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

That is a lot of processed food!  You could have an intolerance to any of the gluten-free ingrediants.  For example, I could not tolerate Xanthan Gum for a long time (I still avoid it).  Can you add fruit and veggies?  

Link to comment
Share on other sites
SLLRunner Enthusiast

Zach, I agree with Cyclinglady about other food intolerance, especially with processed food. There are many types of food intolerance, so I suggest adding in less processed and more whole foods until you figure out what your intolerance is.

Link to comment
Share on other sites
GFinDC Veteran

The Foster Farms gluten-free corn dogs don't agree with me, probably because of the soy flour in them.  You should try and eat more whole foods and forget the processed gluten-free things for a while.  Also are you sure the pizza dough you are using is gluten-free?  And the sauce etc?  Even some flours that you would think are naturally gluten-free like corn meal have been found to have gluten contamination.  General Mills had to pull their gluten-free Cheerios cereal recently because it wasn't really gluten-free.  So you can't always trust gluten-free labeling.  Seems a shame but there it is.

Why not try some simple home cooked foods.  Veggies and some kind of hamburger is easy to make.  Rice is not hard to make and you can mix it with veggies and meat also.  Carrying some fruit and nuts around in a small bag is good for snacks.  It's a learning process going gluten-free.  After a while you will get used to eating differently and better than before.

Link to comment
Share on other sites
Sue7171 Rookie
19 hours ago, cyclinglady said:

That is a lot of processed food!  You could have an intolerance to any of the gluten-free ingrediants.  For example, I could not tolerate Xanthan Gum for a long time (I still avoid it).  Can you add fruit and veggies?  

 

19 hours ago, cyclinglady said:

That is a lot of processed food!  You could have an intolerance to any of the gluten-free ingrediants.  For example, I could not tolerate Xanthan Gum for a long time (I still avoid it).  Can you add fruit and veggies?  

 

23 hours ago, Zachm said:

I went gluten free back in late July, 2015. Before that I had had problems of using the bathroom constantly, like got no sleep because it would keep me up on quite a few nights. After the diagnosis I did make a few mistakes with CC, eating stuff that actually did have it, and touching things that did, so I would say since September, I have been EXTREMELY knowledgeable on what I am even touching and cook my own food. So, the weird thing is with me, I get these HORRRRRRIBBBLLLEEE cramping diarrhea episodes and they didn't start until after I went gluten free (weird, I know). I will admit, I am very picky and 99% of what I have eaten is this right here:

-Perdue gluten free chicken strips

-Scharr Multi grain gluten free bread (tastes a whole lot better than Udi's, in my opinion)

-Foster Farms gluten free corndogs

-Can't think of the brand at the moment, but gluten free meatballs

-When it comes to snacks, Lays Stacks, gluten free muffins, Utz chips, and a couple other things

-Gluten free pizza I make myself from ingredients I know are gluten free

Like I said though, I am extremely picky and whenever I eat, that is 9 out of 10 times what I am eating. Obviously, I am lacking certain things through my natural diet, especially after this new diet, so I try to take vitamins every day. On the other hand, the only diagnosis I have of Celiac disease is the bloodwork (although my doctor is almost certain the bloodwork is correct) and I have been postponing the endo and colonoscopy due to college and other stuff. I definitely am becoming a hermit though and dont enjoy it so sooner or later I will have to get this done. Also, I have been checked from gallbladder and appendix and those were fine. I kind of wonder about potassium being low causing the severe cramps? And it is VERY urgent diarrhea. Like if I am summoned by my intestines at 3am, there is no just closing my eyes and waiting til the morning lol.   

That sounds to me like alot of processed stuff and oil. I agree with the other posters about xanathan gum and soy. I had to be gluten free for quite some time because all theyears of eating gluten had given me leaky gut. Try to est more whole foods....fruit vegetables non processed meat yogurt. You might have a candida (yeast infection ) in your gut which could cause diahreah. Also if you are using any plastic cooking utensils or Teflon or other non stick coating coated cook ware that you have used with gluten from before you switched. ..give it away or throw it out now. Gluten sticks to plastic and non stick surfaces. Same with a toaster if you are using one that you might have used with gluten bread. Get a new one if this is the case. Just be patient and try to eat as healthy as possible.  An endoscopy would tell you if you still have leaky gut or not. The procedures are not bad at all ive had both. 

Link to comment
Share on other sites
cro Newbie

hi , i have found that home cooking with basic ingredients is the only way ,boring but necessary,to  avoid any upset ,good job i only eat to survive and not a real foody although jacket potatoes are giving me nightmares 

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
      120,500
    • Most Online (within 30 mins)
      7,748

    fine one
    Newest Member
    fine one
    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

    • 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.
    • trents
      Welcome to the forum, @SuzanneL! Which tTG was that? tTG-IGA? tTG-IGG? Were there other celiac antibody tests run from that blood draw? Was total IGA measured? By some chance were you already cutting back on gluten by the time the blood draw was taken or just not eating much? For the celiac antibody tests to be accurate a person needs to be eating about 10g of gluten daily which is about 4-6 pieces of bread.
×
×
  • Create New...