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!

Legitimacy Of Stool Tests


elye

Recommended Posts

elye Community Regular

I am wondering if anyone else has ever had the problem my family is facing right now. Since my celiac diagnosis three years ago, I have long suspected my dad, as well, has a problem with gluten; he's had the classic symptoms through most of my lifetime. He was recently diagnosed with Parkinson's, and I, of course, keep wondering how many of the symptoms (shakiness, ataxia, balance problems) are really from undiagnosed celiac. Last year he had a negative blood panel result. We all know here what that means (nothing).

I have ordered the kit from Enterolab, figuring this will tell us for sure. The reason he cannot just try the diet is because he and my mother are in a retirement residence where they get their three meals and snacks a day, and in order for the kitchen to provide a gluten-free diet they require "documented medical proof" of intolerance or celiac. This would come from their GP, who has poo-pooed Enterolab and says that "gluten sensitivity" is too vague a term, that there is no such thing, blah blah. I feel pretty helpless. I would love to cook all their meals and take them over, but of course this is just not doable. I have heard elsewhere of people having trouble getting stool test results taken seriously. Anyone else faced this problem, and if so, how did you deal with it?

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



jerseyangel Proficient

Emily,

I didn't realize that your dad had symptoms. I don't have any first-hand experience with the stool testing, but I have read on here of several people who's doctors accepted the Enterolab results. Hopefully a few of them will see this and weigh in with their experience. :)

I feel for him that he can't just try the diet and go gluten-free if it helps. It would be so much easier for him. I'll think good thoughts that something can be worked out if the Enterolab comes back positive. I think it's a good idea, though--at least there will be something in writing to support your arguement.

Link to comment
Share on other sites
AliB Enthusiast

Oh Emily, it's like banging your head against a brick wall, isn't it! Nobody takes Gluten Intolerance seriously unless it is bad enough that it presents as Celiac!

My take on it is this. Celiac disease is a genetic vulnerability. If you have the genetic markers, then you will develop Celiac at some point.

However, some people are diagnosed with Celiac through biopsy even though their blood tests have come back normal. What that is telling me is that they are not Celiac. What the biopsy is showing is where Gluten Intolerance has damaged the gut to such an extent, the damage is identical to that of person with Celiac disease.

Celiac is just an extension of gluten intolerance, just as diabetes is, or Rheumatoid Arthritis, or Fibromyalgia. You name it, gluten intolerance is undoubtedly probably behind it! I just wish the Medical Profession would get their finger out and wake up to the damage that is being done by gluten consumption. If they put all their patients on to a gluten-free diet, the waiting rooms would be at least half-empty, and the rest would only be there because their damage has gone too far!

Arrrrrgh! I could scream. I really feel for you. Why people have to be put through hell and back just to get a diagnosis is beyond me! It is not our fault that a proper non-invasive diagnostic test has not been invented, but even if it had been, they would still only be picking up Celiac and would be completely missing all the damage, even low-level, caused by GI. Any microscopic damage caused to the gut will impact on the body's ability to absorb nutrients. If it can't get the nutrients it needs it cannot function properly. If it cannot function properly we become ill. Simple as that. Nobody is looking for deficiencies.

They don't know what is causing a lot of diseases. They just put them under a 'blanket' term of 'auto-immune' disease. The body is eating itself because it is not getting what it needs from the digestive process! Can you find a doctor who has a bit more understanding?

I hope you manage to get this sorted. I now know that both my Mum and Dad died because of Gluten Intolerance so I can really understand what you must be going through.

Link to comment
Share on other sites
Darn210 Enthusiast

Emily,

I saw where someone was having a similar problem . . . may have been a school needing the doctor's diagnosis, not sure. Anyway, they were going to check to see if the doc at Enterolab would provide the required documentation/letter. Never heard how it worked out.

Link to comment
Share on other sites
moonlitemama Rookie
Emily,

I saw where someone was having a similar problem . . . may have been a school needing the doctor's diagnosis, not sure. Anyway, they were going to check to see if the doc at Enterolab would provide the required documentation/letter. Never heard how it worked out.

Oops, that was me, needing documentation for my son's school, but I haven't followed through yet, so nothing to report. I'll post if I do find something out that may help though.

Link to comment
Share on other sites
gfpaperdoll Rookie

I would email Dr Fine to see if he would write you a script for a gluten-free diet. Also can you get them another doctor?

retirement homes are the absolute worse, when it comes to food. I talked to a lady that worked at a retirement home , she was at a celiac meeting as support for a friend & after talking to her she was going to get tested. She said "hmmmm, I wonder if that is what the people have that have to run to the bathroom after every meal."

Do your parents have a little apartment with one of those tiny little kitchens? Can you cook & freeze meals for them to microwave? I would use glass pie plates to freeze in or those glass pyrex bowls with plastic lids. I think microwaving food in plastic is just not safe. I freeze things in those bowls in layers, mashed sweet potatoes, a layer of chopped meat, a layer of rice & on top a layer of green beans, that type of thing.

I am 61 & I find that really I only need one cooked hot meal a day. The other meal I just eat fruit & nuts, a salad, a boiled egg, or a cold piece of meat. I basically just eat twice a day. I eat lunch at 11:00a.m. & then a snack in the afternoon & then something for dinner.

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. 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...