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!

Getting Tested Soon.


bdw062590

Recommended Posts

bdw062590 Newbie

I'm going to try to piece this together as well as I can for everyone. My name is Brad and I'm 22 years old, a graphic designer, engaged to be married to my beautiful fiance...and up until recently I've lived pretty well! Until I started noticing a lot of weird things going on, not all at once, but some all at the same time, actually, throwback time...when I was a youngin' going into high school I started experiencing stomach pains, chronic fatigue, irritability, anxiety (at that time I didn't know the term anxiety or what it meant, in retrospect it was). I was eventually sent to a GI, who sent me to a Chron's specialist and that was ruled out. Oh ding! Dibetes runs in my family, that could be it! I was then sent on to a diabetes specialist who dealt with children only, I was told this "It runs in your family, you're borderline, eat healthy and lose 30 pounds"...I was obese as a kid, still kind of chunky now. So after the GI does an endoscopy and colonoscopy the only closure we really had was (and that I can remember) is mild inflammation, and it could be signs of celiac. All of my teenage / high school years were spent being tired, confused, upset stomach, nauseous, constipated, loose stools, joint pain, insomina, afraid, depressed I guess you could say, but I was a kid who didn't have much health insurance so I just dealt with it accepting it as that's how my body is. Fast forward 7 to 8 years. I've finished technical school, landed a job, got engaged...now I'm living an adult life, Monday through Friday, 9 to 5. My dad's health is down the drain, my fiance has a horrible life-changing experience and ends up having PTSD and now I'm juggling work, my life, my relationship, my family, paying bills, getting restless sleep and my symptoms slowly start to creep back. It took me 2 months of having the aching, sleeplessness, loose stool, joint pain, sinus congestion, brain fog, etc...to realize that my symptoms are the exact same as they were in my high school days, just now I have health insurance (yay for health care!).

My true bottom of the line questions to this is, do these sound like celiac / gluten sensitivity symptoms? I'm sure I've missed a lot of things going on or not gone into true detail, so I'll list them at the bottom of this post. I have setup an appointment with my doctor to get to the bottom of this, after my test for hypothyroidism came back negative (runs on my mothers side of the family, grandma is diagnosed), and to be honest I'm a bit scared / anxious of going back for testing. I have it setup to be tested for diabetes, celiac and to check my vitamins (I learned about that one after lurking the celiac.com forums here for a few weeks).

Also, I'm sure this is redundant and asked everyday but...do I need to be eating gluten before the test if I've been eating is for my whole life? I've gone gluten free for 5 days now and I'm seeing an improvement, I just want an official yes or no. Even if the test returns no, can I eat gluten-free? What should I do, any supplements or special vitamins?

I was just sent to the ER last Friday too, they said I just had gastritis and swollen lymph nodes around my intestines (I think, I was really anxious and in the midst of a panic attack when they told me what was going on, hospitals suck). I'm food logging as well, I noticed today I had a HIGH intake of dairy and that I had blood in my stool from hemorrhoids acting up. So tomorrow I'm not taking in any / very little dairy.

All of this can be a lot, but I'm sure with the help of the forums and testing I can get through this.

Okay, symptoms list time!

-Nausea, bad in the morning.

-Pain, all in stomach area.

-Beating heart feeling, usually coupled with anxiety.

-Tingling/Pins & Needles in feet & hands.

-Exhaustion, even though getting rest.

-Brain fog, concentration sucks at times, can't put together sentences, I'll even forget what I'm doing / where I'm at sometimes.

-Coughing real bad after I drink milk, dunno if this is a gluten response or not?

-Headaches, usually in the front or back of my head, feels like someones hammering a nail into my skull.

-Hyperactivity...I don't get this often, but sometimes I get super wired (noticed this today after eating beef jerky stick & a vitamin water)

-Constipation

-Hemorrhoids

-Insomnia

-Tight breathing, feels like I can't get a "good" breathe in

-Sensitivity to cold

-Sinus problems (stuffy nose, congestion)

-Feelings of weakness, these come and go.

-Weird colored stools, yellow, dark brown, black.

-Pain in hands, knees, neck.

That's all I can really name off the top of my head, and yes, I do workout occasionally and I try to drink a gallon of water a day. I hope this hasn't been an information overload and I can get some response to this.

Thanks for all the useful information that I've found through celiac.com, can't wait to hear from some of you!

-Bradlee

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



MitziG Enthusiast

Yes,m it sounds exactly like celiac, and stress is a common trigger to have the disease reactivate in adulthood.

Yes, you need to start eating gluten again immediately, and continue eating it until all testing, including biopsy, is done. Then, by all means, go gluten free. Many celiacs still get negative test results (it is a flawed science still) and non-celiac gluten intolerance cannot be tested for at all, but causes the exact same symptoms. Blood tests look for antibodies to gluten, and when you stop eating gluten, your body stops making them, quickly. It is imperative you resume eating gluten NOW. Biopsies look for damaged villi. Villi renew themselves every 3 days, and in some people, significant healing can take place in a matter of weeks, rendering a false negative biopsy.

You do not need a drs permission to eat gluten-free. It is important to know if it IS celiac though, as it predisposes you to other auto immune issues and is genetic, so your future children will be at risk, as well as other blood family members.

Link to comment
Share on other sites
bdw062590 Newbie

Yes,m it sounds exactly like celiac, and stress is a common trigger to have the disease reactivate in adulthood.

Yes, you need to start eating gluten again immediately, and continue eating it until all testing, including biopsy, is done. Then, by all means, go gluten free. Many celiacs still get negative test results (it is a flawed science still) and non-celiac gluten intolerance cannot be tested for at all, but causes the exact same symptoms. Blood tests look for antibodies to gluten, and when you stop eating gluten, your body stops making them, quickly. It is imperative you resume eating gluten NOW. Biopsies look for damaged villi. Villi renew themselves every 3 days, and in some people, significant healing can take place in a matter of weeks, rendering a false negative biopsy.

You do not need a drs permission to eat gluten-free. It is important to know if it IS celiac though, as it predisposes you to other auto immune issues and is genetic, so your future children will be at risk, as well as other blood family members.

Well that is a bit relieving in a sense, that stress can trigger it to reactivate...I've been trying to tell my fiance and her family that stress can trigger and they kinda thought I was crazy I guess!

The only cruddy part about all this information is obviously eating gluten again, I just now started to feel GREAT not eating it, except last night when I thought a piece of beef jerkey was gluten-free and I looked to see it contained wheat, soy and corn protein...yucky.

The weird thing is now that I'm discovering my mother has lived MANY years of her life with the same symptoms but they diagnosed her diabetic, but our symptoms are spot on, match to match. I'm now wondering if she is not celiac or gluten sensitive and she just passed it right on to me. It's weird how life works sometimes, right?!

Even if the tests come back negative, false-negative or positive I know I will continue a gluten free lifestyle. just the way I've felt the past two days has been great compared to the past 4 months of feeling overwhelmed and sick.

Link to comment
Share on other sites
bdw062590 Newbie

I have my first GI appt tomorrow :)

Link to comment
Share on other sites

Archived

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

  • Get Celiac.com Updates:
    Help Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - cristiana replied to Larzipan's topic in Related Issues & Disorders
      16

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    2. - Julie Riordan replied to Julie Riordan's topic in Traveling with Celiac Disease
      3

      Any ideas for travelling

    3. - Nedast replied to Larzipan's topic in Related Issues & Disorders
      16

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    4. - trents replied to SuzanneL's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Weak Positive Test

    5. - SuzanneL posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Weak Positive Test


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,498
    • Most Online (within 30 mins)
      7,748

    Kim.cervone513
    Newest Member
    Kim.cervone513
    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

    • 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.
    • SuzanneL
      I've recently received a weak positive tTG, 6. For about six years, I've been sick almost everyday. I was told it was just my IBS. I have constant nausea. Sometimes after I eat, I have sharp, upper pain in my abdomen. I sometimes feel or vomit (bile) after eating. The doctor wanted me to try a stronger anti acid before doing an endoscopy. I'm just curious if these symptoms are pointing towards Celiac Disease? 
×
×
  • Create New...