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!

I'm Back -- Osteopenia Is Reason Enough!


moonunit

Recommended Posts

moonunit Apprentice

Hi everyone! I went away for a while, because doctor after doctor all said NO, you do NOT have celiac disease, you do NOT have a gluten intolerance, stop asking because we are not going to answer that question again. (I'm paraphrasing... the actual quote was "we're done pursuing that.") :)

I went gluten-free for three months (AGAINST a "celiac expert" doctor's advice, I might add). For the first two months, no real change, nothing I could point to and say AHA. Third month: a world of difference! I actually felt better! Symptoms that had gone on for YEARS were finally going away. Amazing!

But the scientist in me had to do a control. I went back on gluten. First two weeks, still healthy. Hmm, must not have been the gluten... but wait. BANG, sick again. Beh, enough was enough! I went back to the gluten-free diet.

I had asked my doctor for a bone density scan, just in case. She said no, I don't need one. So when the bone scan guy came to our local tree-hugger grocery store, I went and paid out of pocket to have him scan my finger. My bones are normal... for an 80-year-old! Osteopenia, he says. Go give this paper to your doctor and tell her to give you a proper scan.

I went back with paper in hand. She agreed to test me, to shut me up. Didn't want to even look at the scan I brought with me. Said those things aren't accurate at all. Okay, good, then my scan should be normal. Right?

Got the call just now, osteopenia in hip and spine! She's baffled. What could it be? It must be my Crohn's, which was diagnosed by one lab tech in `93 and nobody has ever found any evidence other than that paper of its existence. Doctors all say the diagnosis is absurd until they see that shining golden document, then I couldn't possibly have celiac or gluten intolerance, because there it is in black and white: Crohn's. No reason to question the hospital who not long after that diagnosis lost its accreditation. It has been written, therefore it is truth.

Whatever. I'm done. I've had three lab tests now, and all came back positive for gluten intolerance. I've had more than three doctors and they all say nope, not gluten intolerance, no way, the test isn't "positive enough"! But at least my current doc humors me and says condescendingly that "if gluten-free is working for you, keep doing it." That's more than the others said. They asked me to stop the experiment. Even the expert guy.

Point is, my "Crohn's" is going to be "in remission" forever, once I stay gluten-free. I just know it. I'm going to repair my bone loss, if that's even possible, and get rid of the symptoms that have plagued me, and be healthier than I've ever been. And everyone except me will be mystified as to how it could miraculously happen all by itself with no medical intervention.

Yeah, I don't need no Krispy Kremes, not now, not ever. I'm finished with gluten forever, and I just wanted to tell my silly little story so that if anyone else feels the same way, they will know that sometimes doctors don't know best. Maybe THEY're on drugs. There's no other SCIENTIFIC explanation for their behavior! :)

-moonunit

P.S. -- gluten-free pancake mix isn't half-bad... :)

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



CarlaB Enthusiast

Welcome back! My docs told me I didn't have it, too. I was tested by Enterolab, it's the only test that was positive, very positive, but I was gluten-free when they did the traditional blood test, so how could it have been positive? Hopefully, as time goes on, the medical profession will catch up with what we're all learning on our own ... we are the gluten intolerance pioneers!

Link to comment
Share on other sites
Guest nini

good for you moonunit... it's quite the revelation when we realize that Dr.s don't know OUR bodies as well as WE do, go figure.

Anyway, gluten-free pancake mix can also be used to make onion rings and as a batter for fried chicken! YUP!

Link to comment
Share on other sites
moonunit Apprentice
good for you moonunit... it's quite the revelation when we realize that Dr.s don't know OUR bodies as well as WE do, go figure.

Anyway, gluten-free pancake mix can also be used to make onion rings and as a batter for fried chicken! YUP!

:o ONION RINGS?! I could have ONION RINGS?! You just made my day. I'm going to try that as soon as possible! :)

Link to comment
Share on other sites
Ursa Major Collaborator

Welcome back moonunit! That's hard to believe, that you had THREE positive blood tests, and your doctors, including that clueless GI, claim you can't have celiac disease? What is wrong with them?

Good for you, to just take your life and health into your own hands now. What are you doing about the osteopenia? You should be tested for your levels of vitamin D, calcium and magnesium (amongst others), to find out how much supplementation you need. Just supplementing with calcium and magnesium won't help. Without vitamin D your body can't absorb the calcium and magnesium, and you're probably deficient in it.

Link to comment
Share on other sites
Guest nini
:o ONION RINGS?! I could have ONION RINGS?! You just made my day. I'm going to try that as soon as possible! :)

yep! I just made onion rings the other night and they were awesome! I used 1-2-3 gluten-free pancake mix, mixed in two eggs, milk until the consistency I wanted, (you just have to play with it), garlic powder, pepper, paprika and salt... then I sliced up a big ol sweet onion, dipped the rings in the batter and fried them in my fry daddy! (had to do a bunch of batches cos I have a small fry daddy but hey) oh and they were awesome.

Link to comment
Share on other sites
queenofhearts Explorer
yep! I just made onion rings the other night and they were awesome! I used 1-2-3 gluten-free pancake mix, mixed in two eggs, milk until the consistency I wanted, (you just have to play with it), garlic powder, pepper, paprika and salt... then I sliced up a big ol sweet onion, dipped the rings in the batter and fried them in my fry daddy! (had to do a bunch of batches cos I have a small fry daddy but hey) oh and they were awesome.

Hey Nini, I've been pondering getting a Fry Daddy... what I want to know is whether it eliminates the "fry" smell hanging in the air for days. That's my main objection to deep frying... always used to indulge the urge for fry outside the home... now that's become problematic, so I'm questing. Think it was a worthwhile investment?

Leah

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



Nic Collaborator
Anyway, gluten-free pancake mix can also be used to make onion rings and as a batter for fried chicken! YUP!

My son loved onion rings before going gluten-free. How do you make them using pancake mix?

If anyone is looking for a very good pancake mix look up Gluten Free Naturals on line. They are a small company here in Cranford, NJ and they only sell to our local health food stores around this area but also on line. They actually taste better than aunt Jamima's.

Nicole

My son loved onion rings before going gluten-free. How do you make them using pancake mix?

Nicole

Sorry, got so excited when I saw onion rings that I didn't continue reading the rest of the replies before I replied. Just ignore that last one.

Nicole

Link to comment
Share on other sites
Guest nini
Hey Nini, I've been pondering getting a Fry Daddy... what I want to know is whether it eliminates the "fry" smell hanging in the air for days. That's my main objection to deep frying... always used to indulge the urge for fry outside the home... now that's become problematic, so I'm questing. Think it was a worthwhile investment?

Leah

I think it was a good investment, although I don't fry stuff that often, and when I do I wish I had gotten a bigger one! But for small batches of fried food it's perfect. (I made up large batches and froze what we didn't eat, I can then heat it on a cookie sheet in the oven later)...

Link to comment
Share on other sites
sparkles Contributor
Welcome back moonunit! That's hard to believe, that you had THREE positive blood tests, and your doctors, including that clueless GI, claim you can't have celiac disease? What is wrong with them?

Good for you, to just take your life and health into your own hands now. What are you doing about the osteopenia? You should be tested for your levels of vitamin D, calcium and magnesium (amongst others), to find out how much supplementation you need. Just supplementing with calcium and magnesium won't help. Without vitamin D your body can't absorb the calcium and magnesium, and you're probably deficient in it.

and don't forget the B Complex panels..... not having your B vitamins causes lots of nuerological symptoms!!!!

Link to comment
Share on other sites
Ursa Major Collaborator
and don't forget the B Complex panels..... not having your B vitamins causes lots of nuerological symptoms!!!!

Thanks for the reminder! I just wondered today why I have started all those neurological symptoms again (a vibrating feeling all over, hands feel like they're falling asleep)...................I haven't been taking my vitamins for a while, because I was too overwhelmed with everything else! I usually take a good B-vitamin complex, but haven't taken it all summer. I find that when too many things are going on (visitors all summer), I get so overwhelmed emotionally that I can't cope with taking care of myself as well as taking care of everybody else any more. Of course, eventually I fall apart in every way, and will be no good to anybody (I am close to that state right now).

Link to comment
Share on other sites
sparkles Contributor

If there is too much damage to the villa, the B12 shot will be necessary (for the rest of your life) though it seems the other B vitamins can be absorbed.

Link to comment
Share on other sites
mle-ii Explorer
If there is too much damage to the villa, the B12 shot will be necessary (for the rest of your life) though it seems the other B vitamins can be absorbed.

From what I've read a sublingual (under the tongue) B12 would work fine as well. The Methyl version is the best absorbed.

Here's what I take every once in a while:

Open Original Shared Link

Though don't take it too late in the day as I've found it can interfere with sleeping sometimes.

Mike

Link to comment
Share on other sites
jcc Rookie
Hi everyone! I went away for a while, because doctor after doctor all said NO, you do NOT have celiac disease, you do NOT have a gluten intolerance, stop asking because we are not going to answer that question again. (I'm paraphrasing... the actual quote was "we're done pursuing that.") :)

I went gluten-free for three months (AGAINST a "celiac expert" doctor's advice, I might add). For the first two months, no real change, nothing I could point to and say AHA. Third month: a world of difference! I actually felt better! Symptoms that had gone on for YEARS were finally going away. Amazing!

Great story. Kudos to YOU for being smarter than your doctors.

Cara

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
      120,495
    • Most Online (within 30 mins)
      7,748

    Zofosho
    Newest Member
    Zofosho
    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. There have been many posts on this subject on the forum, it is interesting to read of your experiences. Although I've not had TMJ, except from time to time have had a bit of mild tension in my jaw, I have had issues with my trigeminal nerve.  I read that sometimes a damaged 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.   Thank you again for your input.
    • 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...