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!

So Confused! Need Doctor?


LuvMoosic4life

Recommended Posts

LuvMoosic4life Collaborator

Hi...

this is really lengthy, but I dunno how else to get my point/concern accross...

I have had digestive issues my whole life, but they started getting really bad around age 17. I am 22 now, and ever since then they just seemed to get progressivly worse. My symptoms are mostly severe gas/bloating and frequent constipation and then diarhea. My gas was so bad to the point where I would avoid social events and sometimes go w/o eating before going to school or going somewhere important because I knew I would be in such discomfort. I figured having gas is just the way I am since I grew up in a family where almost everyone, especailly my dad had the same problems... everyone in my family just told me, and still tells me it is normal, although by age 18 it started getting to the point where it was an everyday thing, I would eat, and then 1- 3 hours later I felt like I swallowed a balloon with a knife stuck in it. I had heartburn problems in high school and began to come down with viral infections that increasingly got worse, until in this passed year I got sick nearly 10 times and went on antibiotics 3 times. At one point I had pink eye, sinus infection and strepp throat all at the same time. Just recently I developed soars in my mouth and had a buring tounge for no appearent reason. I had my blood checked to find out I was borderline anemic ( I was very anemic around age 16/17 with my hemoglobin down to 8 and hospitalized b/c I kept passing out.) NO doctor or physician could ever give me an answer to my getting sick all the time, and the heartburn problems they were cluless about.

About a year ago I started linking my heartburn to eating bread, so I slowly cut it out of my diet as much as possible, it was something I would have every morning, either toast, or some type of whole wheat cereal. I was eating a lot of wheat pasta also and noticed that I was having diarhea on a regular basis, and even worse just before my menstrual cycles. I would go for days being constipated and then all of a sudden I couldn't leave the bathroom... I tried switching over to regular "white" pasta and it actually was having a worse effect on me.

By the time 2008 rolled around I stopped eating pasta, unless I knew I wasnt going anywhere. At the beginning of this year I started having bad reactions to beer. sometimes it would bother me, other times it wouldn't, but I never really had a problem before. I was talking to a friend about my symptoms and she suggested I may have gluten intolerance. So tried going compltely gluten free and I couldnt belive my symptoms nearly disapeared! My family thinks I'm making this all up and I've been doing a lot of research on celiacs, I'm almost convinced this may be what I have and what half the people in my family have...

...after eating gluten free for a couple weeks, I went home fore easter and ended up spending a whole day on the couch after eating pretzels, the discomfort was horrible!!!! I started getting a headace, something I rarely get anymore. I used to get migranes as a child after eating all the time, but never really thought anything of it....by the third day of being home I had painful gas, constipation, heartburn and a headace.

I know I have to be eating wheat before getting a blood test done for celiacs, but I'm having a hard time going back b/c I feel so good gluten free! Actually, I feel so good I almost am thinking I dont have a problem now and it is all in my head like my family is telling me. I dont have a doctor and am trying to find one. I just fear that he/she may not take me seriously or be knowledgable about this disease/intolerance. I went to the health center at my school and the nurse practitioner was trying to hide a smile when I explained to her my problems, and then I had to explain to her what celiacs is!!!!! and how its tested!!!!!

does anyone know anywhere to go in/near buffalo NY???? or is celiacs something that all doctors should be familar with???? I don't even know how i should approach a doctor with this. I dont know for sure I have celiacs, but I know for sure that wheat/gluten is a main source for my digestive problems. and even if I get tested and its negative, I'm still avoiding gluten. I just think I should get tested to find out if I have celiacs so that way I'll know how serious of a gluten free diet to follow.......

this is really stressing me out!

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



tom Contributor

Hoo-boy it IS a tough call for many - this part about eating gluten for a test when you already know it makes you sick.

Though it doesn't make a definitive dx for Celiac (no S, sorry if anyone's offended that I've again corrected someone new), the Enterolab tests can provide proof of a gluten problem & also whether you have the "usual" genes for celiac disease or Gluten Intolerance. (There is still much work to be done on the genetic side - a few wks ago, 7 more genes were reported to be involved)

It seems easy to see that much of your family would also benefit from a gluten-free diet - not that they'll ever believe it. <sigh>

Link to comment
Share on other sites
LuvMoosic4life Collaborator

yeah thats true. but I'm also worried I wont find a doctor that even knows that-ha

yeah, trying to explain a gluten free diet to my family= the response : what? thats insane. thres nohing you can eat!!! you're crazy......

plus they are almost all italian.......that doesnt help. :lol:

Link to comment
Share on other sites
bareden Newbie

You can have a DNA test done to see if you have the gene for Celiac. It doesn't matter about your diet because it will show up anyway. I had all the classic blood test and showed Celiac but the doctor ordered the DNA to be 100%. It is hard to find a DR who is educated on this but you know your body better than anyone.

Link to comment
Share on other sites
tom Contributor
You can have a DNA test done to see if you have the gene for Celiac.

I don't recall the #s exactly but there are at least a few % of biopsy-confirmed celiacs w/ neither DQ2 nor DQ8.

Link to comment
Share on other sites
nora-n Rookie

About italian, there are so many Italians that are celiac , that all school children get screened for ceilac over there. It is really easy to get gluten-free food in Italy and they have gluten-free pasta and pizza etc.

Enterolab has a gene test too (you have to pay privately for all Enterolab tests I think) and they will tell you what the genes are, as opposed to most other labs wholy use the commercial test kit for DQ2 or DQ8.

There are many of us here with gluten-sensitive genes (like DQ5 or DQ7) but doctors usually say that only DQ2 or 8 can be celiac, but I find lots of medical articles out there that say otherwise. There are proven cleiacs out there with other genes.

nora

Link to comment
Share on other sites
LuvMoosic4life Collaborator

I heard that with the DNA test, it just shows wether or not you carry the gene for celiacs. Just because you have the gene doesnt mean you will get it...

....but I know less than people here :)

does anyone feel deyhdrated after eaten gluten?

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
      120,506
    • Most Online (within 30 mins)
      7,748

    NanaA
    Newest Member
    NanaA
    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...