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!

Just Diagnosed Today...need Advice.....? Please Help!


Krystle56

Recommended Posts

ShayFL Enthusiast

It may be hard to get all traces of gluten out of that bread machine and pasta maker if used even once before. :( Clean...clean...clean and clean again. Maybe you will get lucky. Gluten is insidious......So if you make bread or pasta with them and get symptoms of "glutening" dont use them again.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



Krystle56 Newbie

I think we used the bread machine once and never used the pasta maker so I'm going to make sure and wash out the bread machine really well prior. Like soak everything and then wash it and then soak it/wash it again.

Good news......I'm getting to see the GI specialist sooner.......as in this Friday!! I am so relieved. It was a bad feeling thinking I'd have to wait nearly 2 months.

The current clinic said something like "your test showed that you have celiac. With 9 being you have it, you scored an 18"....or something like that......does this make sense to anyone????!!!!!!!!! I mean I know I have it, otherwise I wouldn't be feeling so much better after just under a week of gluten free....but is that a normal way to tell someone something like that? I'm so confused. It makes me feel like I'm off the charts!

Link to comment
Share on other sites
Amber M Explorer
I think we used the bread machine once and never used the pasta maker so I'm going to make sure and wash out the bread machine really well prior. Like soak everything and then wash it and then soak it/wash it again.

Good news......I'm getting to see the GI specialist sooner.......as in this Friday!! I am so relieved. It was a bad feeling thinking I'd have to wait nearly 2 months.

The current clinic said something like "your test showed that you have celiac. With 9 being you have it, you scored an 18"....or something like that......does this make sense to anyone????!!!!!!!!! I mean I know I have it, otherwise I wouldn't be feeling so much better after just under a week of gluten free....but is that a normal way to tell someone something like that? I'm so confused. It makes me feel like I'm off the charts!

I personally haven't heard it put like that, but I am fairly new to this too. It seems like they made it sound like "no big deal." Obviously, they don't know much about it. One doctor I went to once a few months ago said, "Why bother to spend the money on tests (I have insurance), just stop eating it, and we'll call it Celiacs." And further said, "the only way you can tell is with a colonoscopy anyway." I had already read a multitude of medical stuff and I knew she was "DUMB." She is the same one who told me that I had a "thickened Hymen", when in reality, it turned out to be a prolaspsed bladder! DUMB! We don't want to believe doctors can be stupid, but some times they really are! How did they get through medical school anyway? I haven't found a good celiac doctor yet except my allergist. Still looking.(MD) My dentist is a celiac! At least he can help the tooth sensitivity!

Glad your going on Friday, I think you need attention now! Good luck, let us know.

Link to comment
Share on other sites
Krystle56 Newbie

I don't even know what test it was that told them I had celiac....I had so many tests it's hard to tell! I was assuming a blood test but maybe I'm wrong.

Link to comment
Share on other sites
lizard00 Enthusiast

It was more than likely the tTg test- that stands for tissue transglutaminase. It's a blood test. The test is pretty specific to Celiac. If that specific test comes back elevated, it's usually pretty indicative of Celiac Disease. Did they say anything about doing an endoscopy?

Link to comment
Share on other sites
bjn12670 Rookie

Hi Krystle, my name is Becki and Iwas also just diagnosed on Friday to be exact. I am not even sure if I am posting to the forum correctly. I have a lot to learn about this disease and this website. Anyways.... I know exactly how you feel and I too, am so overwhelmed. This site has been great and I am looking forward to learning more through all the experts on this site. I guess we will learn together. Best of luck and hang in there.

quote name='Krystle56' date='Nov 4 2008, 06:18 PM' post='481656']

Hi everyone :)

My name is Krystle, I was just diagnosed with celiac today. After being shocked, I was upset, and now I'm thankful that I know what is. The problem is, I don't meet with the dietician until next Thursday and I need some help with what foods I can/can't have....what to shop for, etc. I'll tell you a little about me, I'm 22, I'm a college student, and I live with my boyfriend. We probably don't eat as healthy as we should so this is going to be good for the both of us. (I don't expect him to make any life changes but he's agreed to try new foods with me, along with seeing the dietician). The thing with being in college is, I like to grab something quickly in the morning and bring it to school with me for lunch, because I'm on campus all day between class and work. Cooking and baking are two of my favorite things to do, so I am really willing to try new things. I've been searching the web for pages with gluten free recipes and there are so many....I don't know which are good and which are bad!

I don't really know anyone else with celiac (or else I do and just don't know they have celiac)....so I think this is going to be a great resource for me! I'm trying to stay positive so this will be helpful I think :)

Thanks in advance!

Link to comment
Share on other sites
ang1e0251 Contributor

Hi to both new members. I just wanted to tell you if you don't want to mess with the breads much in the beginning, you don't have to. If the flours are hard for you to find it could be a pain for awhile. I just used corn tortillas in the beginning and I liked them so well I don't make much bread even though I have a machine. I toast tortillas with butter to eat with eggs, you can roll sandwich fixings in them, for your grilled cheese, I make quesadillas; spread tortillas with butter then brown in the skillet with cheese in the middle.m.m.m... I make mini pizzas on the tortillas. I toast them first so they're a little stiffer.

I like apples with peanut butter and rice krispy squares only make them with gluten-free Rice Chex. Just dive in and start cooking! It's not as hard as it seems and you'll get the hang of it fast. You are a smart college girl!!

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



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...