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!

Introduction


Odysseus

Recommended Posts

Odysseus Newbie

Hello all, I am new here to the forum. I believe that I have self diagnossed myself with celiac disease. After almost two weeks I have to say I feel so much better. I am 40yrs old and it seems that I have been fighting this most of my life. I hope to learn all that I can from this site. Any start off pointers would be very helpful. Such as where to buy food from, what web sites etc. Things that I wouldnt normaly think not to eat, that kind of stuff. Thanks in advance.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



eatmeat4good Enthusiast

Welcome and congratulations for saving your own life! I wish I had figured it out at 40 like you did! Having said that, the first mistakes I made were eating in restaurants and thinking I could order "gluten free." I couldn't. Kissing someone who has eaten Gluten WILL make you sick, it's sad, but true. Lipstick either has wheat germ oil or CC issues and can make you sick unless you specifically buy gluten free. Change your toothbrush...now and frequently. Check medicines and vitamins. Soy sauce is "wheat sauce" unless you buy gluten free. There is a mainstream brand that is not gluten/wheat, but I don't remember the name. Read all labels. If you hand a cookie to a child, wash your hands. Hand sanitizer will do nothing to gluten except make sure that the gluten you eat is very clean, but it will still make you sick. Breathing flour in can make you sick because it hits the mucous membranes and makes it's way to your stomach. These are a few of my favorite mistakes. Glad you are feeling better. It sounds like you are off to a good start! Oh, and Udi's bread is pretty good. I didn't buy any other after reading all the reviews. :)

Link to comment
Share on other sites
krystynycole Contributor

welcome! I as well am self diagnosed, which can be hard because there is no doctor to help you out through the process in any way. However you've found the right place, I've learned so much just from reading other peoples questions and responses.

First, I'd advise starting to eat just naturally gluten free food. It's the best way to stay positive about your new diet. Stick to the outside of your grocery store eating fresh fruit, veggies, and meats. Then slowly add in other "adapted" gluten-free foods.

Second...check out different food blogs (many on this site) for meal ideas. Also, I enjoy many recipes at www.bettycrocker.com. They make gluten-free bisquick and have a lot of recipe ideas that my non gluten-free husband even raves about!

Link to comment
Share on other sites
sa1937 Community Regular

Welcome, Odysseys! In addition to what others have said, there are some books that you might find helpful:

Celiac Disease: A Hidden Epidemic by Dr. Peter Green and

Living Gluten-Free for Dummies by Danna Korn

The First Year: Celiac Disease and Living Gluten-Free by Jules Shepard

And if you shop the outer rim of the store (foregoing processed foods), it's much easier and better in the beginning. Pretty soon we get really good at label reading and can spot ingredients at a glance that we need to avoid. My first shopping trip was a nightware and took forever. After awhile It becomes almost automatic to know what we can and cannot have. (We still have to read labels though as ingredients can change in a heartbeat.

And keep reading this forum as I got so much good info as I was in the learning process. Plus check out the Gluten-Free Recipes section and post any questions you may have.

Link to comment
Share on other sites
BaldurBen Newbie

Congrats on what sounds like correct self-diagnosis! Eating naturally gluten-free foods such as fruits and veggies is good advice. Read all labels and get familiar with the Safe and Unsafe lists on this site. When starting out, I was surprised to learn that mustard, soy sauce, and black liqorice for example can contain gluten.

One of my favorite ways to start the morning is to make a smoothie from rice milk, fresh fruit juice, frozen blueberries and strawberries, plus one scoop of Thorne MediClear protein powder. Toasted Udi's gluten-free bagels plus fresh cream cheese is another favorite.

Picazzo's is my favorite gluten-free pizza place, and whatever I can't get at my local supermarket I get from Whole Foods or Sprouts. Glutino and Udi's are two of my favorite gluten-free food labels. Also, you can get a lot of recipes, articles, and other good advice by following gluten-free people on Twitter. Finally, if you drink, even in moderation, you might consider giving up alcohol altogether. I never have as much energy as when I do my annual three-week detox course, which excludes alcohol.

Good luck!

Link to comment
Share on other sites
Loey Rising Star

Hello all, I am new here to the forum. I believe that I have self diagnossed myself with celiac disease. After almost two weeks I have to say I feel so much better. I am 40yrs old and it seems that I have been fighting this most of my life. I hope to learn all that I can from this site. Any start off pointers would be very helpful. Such as where to buy food from, what web sites etc. Things that I wouldnt normaly think not to eat, that kind of stuff. Thanks in advance.

Welcome to our wonderful group. I joined in October 2010 and I have to say I have never met a more supportive, intelligent and kind group of people anywhere in my life. I don't know what I'd do without this forum. I'm copy and pasting two links you might find useful. Remember, regardless of what a package says ALWAYS check the ingredients!!! I hope these help.

Loey

Open Original Shared Link

Open Original Shared Link

Link to comment
Share on other sites
Odysseus Newbie

Thanks again everyone for all the encouraging words and good ideas. I never would have thought of about breathing in flour or touching cookies or lipstick. Yesterday my daughters and I took my wife out for her birthday to eat at Red Lobster. Wasnt sure what I would be able to eat. I asked the staff if they had a gluten free menu and to there credit they gave me an allergen menu that showed what contained gluten and what might be cross contaminated. There were a few things on there but I read wrong and ended up with something that was cc. I picked wood grilled fresh fish with broccoli and mashed potatoes. Along with a cesar salad. Oh well, I am on the learning curve. Afterwards we stopped by the store and found some gluten free items. We bought King Arthur and Gluten free pantery flour. Some cookies, bisquick and Betty Crocker chocolate cake which was really good. Also thanks for the books ideas and the links. I will def. check them out. One last thing...where does everyone get the udi's bread. Online order???

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



notme Experienced

if you have an earth fare, they sell the udi's bread. i have a little specialty store that carries it as well. recently i have tried (o my gosh trying to get pasta that is 'right'!!) tinkyada pasta - another brand that is AWESOME!!! 'against the grain' makes baguette bread that is pretty good, i use that to make any kind of sandwich that needs a roll like cheesesteak or cubanos. food tastes so much better when it doesn't hurt :)

Link to comment
Share on other sites
Odysseus Newbie

if you have an earth fare, they sell the udi's bread. i have a little specialty store that carries it as well. recently i have tried (o my gosh trying to get pasta that is 'right'!!) tinkyada pasta - another brand that is AWESOME!!! 'against the grain' makes baguette bread that is pretty good, i use that to make any kind of sandwich that needs a roll like cheesesteak or cubanos. food tastes so much better when it doesn't hurt :)

Thanks for the info. I have never heard of a earth fare so I'll have to google that. Yeah, it does tastes so much better when it doesn't hurt. I always thought "thats just the way it is". Not anymore.

Link to comment
Share on other sites
eatmeat4good Enthusiast

Most health food stores carry Udi's I 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
      120,501
    • 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...